but we put that in that you can withdraw for my reason, and no questions asked. and so we've had 17. what are responsibility of confidentiality, how we will use the data, and because it was set up originally in a university and in my laboratory the idea was that this was a genetic study. and it was ongoing and moderately open as to what we would be able to use that data for to as we moved down the road. and then why is our money coming from? how is this being funded? there ara number of issues that we need to deal with. i know that we have the answer. and i think that's part of what we hope to look at in this workshop is what the balance between privacy and my right or

my want self-awareness of understanding who am i? what can i know about myself? how can you help me find more and myself? who owned the genetic data, and in our case who owns the data or any other personal data for that matter that a person donates to the database. and then again more about secondary participants. especially in our case, we have this different situation where we have both genetic information that i may share 50% but i also have genelogical information. and even though these are different and i'll show you how that reprieved in just a minute. there's some many danger

associated wit that type of information when it's this far, especially secondary participants. what about discrimination and the effectiveness of genome, is that going to protect the rights or whatever those are. what are those right that is we are dealing with? what happens with these social networks based on consumer results? this is -- there are social networks -- there is something that in some ways the gee genie is out of the bottle. and in two years we're going to have $1,000 genome and in five years we've going to have tens and hundreds of thousand individuals that are purchased

their genome. who's going to have that? are we going to have 100,000 people that have it, companies, academic institutions that have that information? this workshop is probably overdue by about five years maybe. i don't know how far that is. :

what do you mean by origin. we'll come back to that. so you look at a pedigree chart of an individual, and you go up across that blue line across the top, that's their paternal inheritance, that's what -- i share, if i'm sitting over here on the left, i share my y chromosome d.n.a. with that individual, that individual, that one and that one, so by knowing my y chromosome d.n.a. and assuming that this pedigree in fact is correct, then i know something abou my father, and i know something about my grand father, great grandfather and great great grandfather, and all of their male siblings, i know something about their genetic information. likewise, i look down this other

side, my mitochondrial d.n.a., right now, at the level of interpretation of this data, it's still quite gross. we're not down very well to the individual level on being able to identify that, but it will happen, it's getting very close. likewise, i can follow by mitochondrial d.n.a. up here and direct to consumer messing for genealogical purposes or for family tree searching type d.n.a. has not utilized this. but that -- it's only weeks or months away. until they will be using that type of data to try and reconstruct information about the rest of this pedigree. so who am i? what am i?

this idea of origins that sandra brought up. if i take myself as an example, i have a member of the utah gene pool in 2009 in u.s.a. 100%. if i go back a few years, i wasn't a part of the utah gene pool at that time. i was a part of the virginia gene pool, u.s.a. 100%. ok. so what am i? am i utahan or virginiaan? well, it depends, doesn't it, on when we want to define that origin. if io back another 30 years or so, who am i? well, i wasn't around in 1933. but my parents were. right. and all of the genes that make me up, is that right? that i am made up, i better be careful.

were present in my parents. so what do i know about my parents? well, using the genealogical information we have in the database, i can identify that my parents were actually utah, so i'm utahan. if i go back again to 1900, what am i? if i look at my grandparents, three of my grandparents were in utah at that time, but one of them was in lee, england, so what am i? anybody guess where i'm going here? you know, if i get back here to 1800, what am i? well, my y chromosome line says i'm american, i'm still in the u.s.a. at that point, ok. my mitochondrial line says no, i'm swiss, but my genealogy tells me i've also got english, danish, and i have swedish that's in there, so what am i, and you know, i tried really hard to find a picture of a put, but that's what i am.

but the reality is, is that you know, i'm not too far removed fbom any of you in here and that's the same situation that we deal with. it goes back again to this origins question, who am i, what aim, that sandra brought up earlier. so at smgf, as i mentioned, we've spent the last 10 years building this data set and this is how it it's now available. the bottom part of that mission was to make the data available to the public. how can we do that and we hope a responsible way but also a useful way so the people can actually use this data for the purpose of that we're stated in being able to identify and their genealogy, that's really what we were after, and so this is an example of our y chromosome search. this is actually using a surname much i can go in to this

database, and you can plug your surname in here, and right now, it -- what it does is it defaults, just sort of takes the -- our mean value, in our data set for all the y chromosome that we test at and i'm going to ask, how many woo words are in hour database. and when it comes back, it turns out that there are 17 woodwards, that surname shows up on 17 different lines in my -- in hour database. now, it would be really interesting if all 17 of those woodward lines were exactly the same on the y chromosome, because we see the surnames follow that y chromosome lineage in a lot of western cultures, but it doesn't. there's actually 14 different y chromosome types, that are associated with this woodward surname. so it really doesn't identify me in that database. i'm one of those of. i'm one of those of lines.

it doesn't identify me directly. but what we' done is that wouldn't be a very useful tool for anyone trying to find a relative or someone connected to in our database if they had the same surname as woodward. but there's another little part right here, you see a couple of icons, this is the pedigree, if you push on that pedigree icon, this is what comes up. this is the data that's associated with this number three sample right here. goes across here. if i push on that icon, this is what i get. it connects into the genealogical database that we have, and it shows a number of individuals and it shows a lot of names. including this guy up here, franklin james woodward up here. and -- but it also has a number of individuals that are showing up as protected.

those are individuals that were born prior -- or since 1906, i think at this point. and we've -- anything for the last 100 years, any kind of personalized name, information, or genealogical information associated with an individual, that was born within the last 100 years is not shown. and it's not accessible. it's actually not even on the public accessible data set that's there. but once they get to be 100 years old, then we do rebuild that. so that's the type o information that's available. on that data set. now, just really quickly, there were three ideas of identity that i wanted to address. i'm not going to go into these stories, but ones that we post on our web site of people who wanted to know who they were, had no idea, this individual,

there's actually, he's been trying to do his genealogy, he gets back a couple of generations and he finds the end of his trail, he suspects that there's been a name change, for whatever reason, can i find something out about it, he looked at his y chromosome d.n.a., compared that particular d.n.a. with others in our database, found some other surnames that were not his, and started doing some research on those individuals and in fact, found a connection. another one, this was a -- this one was particularly rewarding to me. i don't know, i like -- this was a -- this was a populion study, this was in south africa. we have a data set, a large number of individuals in south africa, we have situation here of a number of children off the street who are living in a she will -- shelter, provided by the city of johannesburg.

the idea was to try to reconnect them to their biological family. this particular kid had been in the shelter for 14 years, we were able to -- we dn't have an exact match for him in the database. we tested him, didn't have an exact match, all we did have was some indication of some populations nearby that may fit and so the social workers went to work, and started asking questions and interviewing and actually found this boy's family, found his father and a brother and were able to reunite them after 14 years, and again, this woman of african-american descent wanting to know where does my ancestry come from, i was able to find some very nice close possibilities in the database, was able to follow up on that, and find out more about who she was and where she was

from, and addresses now this sense of identity, sense of community. she now has a community that she feels a part of, wants to be a part of, although there are some limitations as to how tight those definitions really can be at this point. let me just finish with just an observation on what it means again for origin and what it means for comiewpt. and this is -- for community. this is a -- this is data that we'll be presenting at ashd next month in collaboration with lynn jordy's group' university of utah, where we have about 800, almost 900 individuals who we ha now typed on the 6.0 chip and look for autosomal sites

that tell us who we are with this idea of community and they're very dependent upon the parameters that you are attempting to test. in this case, if we asked for four populations, we can get four populations out of this data set and we get varying levels of add mixture associated with them and if we pull out just this one over here on the very far right that looks pretty homogeneous, when we look at it, these are samples that come out of bolivia, we'll find that really, only about half of them are fairly uniform as far as what we would classify asatef he americans. the others are add mix to various degrees from both different parts of europe and africa. as we see that data. so who is this guy? we collected this d.n.a. in bolivi all four grandparents

of that individual live in bolivia today. but genetically, we have some connection to other places in the world. and you can take this to -- as deep as you want it to go. we took one community, vera cruz in mexico, which i is identiable from any other group we looked at in mexico and when we look at them individually and on a higher level, we'll see there are differences within that community, so much so that we can even get down to individuals that belong to the same nuclear family, patients and children. -- patient parents and childred split them away from second level cousin relatives. so rolely, it's dependent on who you are, the question, who you

are, is very dependent on how close you want to look. and just one other -- one other statement on this, that we will be presenting next month, at shag, when you have start looking at the data and sst values between populations, there's ry significant value. as you start to fill that in, which we've done with about, another 20 populations, that were n included in the habmap data, the sst values between populations are dropping and they're dropping significantly. and the idea that we're moving more towards a continuum rather than discrete populations, i think, and that's really what i be -- so we really are going towards that first idea that the

mow electric car -- it just struck me on the front of the justice building just down the street here, justice is the great interest of man on earth, wherever her temple stands, there is a foundation for social security, general happiness, and the improvement and progress of our, what? our race. what is the -- what is the meaning of the word race? yes. people. homosayen and sapien, i thinknd ultimately i think this is where it's going to go. thank you. >> we have a few minutes for estions. >> i also just wanted -- these are another important thing with these data sets and the data set

we have is open to the academic communities for research. these are some of the papers we've published in the last year. using the data in this data set. most of these are involved with both y pathogroups and might cone krone deal pathogroups. >> the 100 year rule, does that apply, if an individual has died, or do you limit the 100 years? >> we keep it at 100 years, where the person is alive or has died. in the united stas, the law sits right around 75 years, as far as publicly available data. like census data in the united kingdom, it sits at 100 years, and most other european nations i think are at 100 years and

that's why we've decided to go in this age of the internet. spoo >> it was a wonderful presentation, thank you, scott, we'll see everyone back at 3:20 p.m. for our last session today.

emanuel, [inaudible conversations] [inaudible conversations] >> if we could reconvene, i'm the most opportunities of all, wandering -- truant of all, wandering around, speaking to all of you. i think that from -- we want t topromptly end at 4:30 p.m. rather than 5:00 p.m. so we have -- we'll end at 4:30 p.m., despite what it may say at the

top. alyssa are you -- >> she's here. >> alyssa will be speaking under the heading of direct to consumer genetic companies and at this research. we heard from her earlier, we'll hear herresentation now on the companies as research the problems of disclose you're, intellectual property. so thank you. >> everybody hear me ok? >> thank you for having me. this is a bit of a daunting task to talk about research and all of the different companies, so i wanted to just provide a very broad overview, just thinking about some of the different considerations, a lot of which have already come up today. this is by no means comprehensive, but just in terms of thinking about what is direct

to consumer research and for brainstorming myself about what this topic involves and the depth, think about doing internal research within a company, you can think about external collaborations with third parties, which has certainly come up a number of times today, performing randomized control trials, which is obviously sort of the hole grail of deriving information, but not something that is always feasible from a corporate perspective, and a time perspective. lab-based investigations, sort of the science basis, as opposed to also looking at consumers and attitudes andism packet and clinical outcomes and also, non-for profit organizations versus corporate organizations and just trying to part some these different areas. then we heard earlier from sandra about the research revolution, so i don't have to cover that, but that's sort of

e new initiative that 23 and me has put forth in terms of doing very disease-focused research studies and trying to engage consumers somewhat as citizen scientists and participants directly. and then a lot of the different areas to consider in terms of focuss some companies look for new disease associations. some companies are looking at translation of clinical outcome information. i know decode genetics is involved in a lot of the clinical utility efforts that are out there. exploring clinical delivery models, and infrastructure, so if we're going to bring forth this kind of information directly to consumers, on the other side, what is to be expected in terms of how do you deal with that, what does the implementation look like, what kind of resources do you need for consumers, physicians, for our health care system a obviously things like the psychosocial impact of getting things lik impactesults. so with all of that said, i just

wanted to sort of take a moment to take a step back. i'm going to focus on meta again i cans, and what navigenics is doing. essentially, we're obviously a genetic testing company, we are a lab, an our mission, which i think is actually important in this context, is to improve health outcomes, by providing insight into genetic risk factors and this is really to help enhance primary and secondary information, differential diagnosis but ultimately to improve clinical outcomes, so that's a pretty broad and lofty goal and the question is, how do you make that happen, and so obviously, a component of that is taking the wealth of research and information that's already available, but then taking it to the next step and also getting involved in research on an ongoing basis for continuing discovery.

so very quickly, the process works by collecting a saliva sample. people come to us either through collaborations, through their physician or directly as consumers through the internet. it goes to our certified lab, where we do the different analyses, we're primarily using microarray and we provide confidential results through a web portal, and over time as new discoveries are made, as new genetic associations are understood, we provide updates so people will get an e-mail notification or have information sent to their physician that new information is available, they might have a new condition that they can learn about or new market. and throughout this process, we have genetic counselors on of staff, pretest and post test to help people through the information. and this is just a sampling of some of the conditions that cover a broad range of disease areas, everything from cancer,

cardiovascular, gastrointestinal and many more. so this is a very text heavy slide. simply because i wanted to really get some of the information out as to how we present the options for somebody to opt into research and i think this is again, as i had mentioned earlier today, something that's important and slightly different about how we approach this, which is that if somebody wants to donate their d.n.a. to a research endeavors, they have every right to, but it is not required, and so if somebody chooses to opt into this element of the service, they simply click a button on the web site, it follows our informed consent process, but it's separate from the informed consent process, and it essentially gives us the ability to use their genetic data, which your genetic data and your phenotype information to any data we collect about them in

terms of medical family history background, and we delink that from their account information, which is anything that is identifiable in terms of their name, their waitress, we keep those very separated and so we share those with my organizations that we're currently collaborating with and these organizations are then allowed to separately or jointly publish studies, and results th include here genetic data and phenotype information and to deposit such information to -- public data repositories or make them publicly available by the journals that they're being published in. so fther, there's no financial compensation for participating, and at any point in time, somebody can actually choose to opt out or withdraw their sample and their information from this voluntary service and so in the events that somebody changes

their mind, and doesn't want to be involved, even though the information is easily identified, they're able to do so and we will remove it within 90 days from any of these research endeavors. now, obviously, especially because the data is deidentified to begin with, when we're sharing it with third parties, we can't go back and remove it from any studies that have already been initiated or any publications. moving forwards, the information will not be shared and again, finally, if someone chooses not to participate, it does not impact their results or the service that they receive. so this is just a handful of the collaborators that we're woulding with and i'm going to go into detail about some of these in terms of the specific studies that we've been working on. first is we actually have a randomized control trial going on with mayo clinic right now, it's in the final pilot phase and we're looking forward to

launching the full-scale efforts within the next few months hopefully. and essentially, it's a multiarm trial to assess delivery models, to understand how to bet communicat genetic risks to mayo clinic patients and to understand how to most effectively integrate the relative risk analysis into mayo clinic's risk assessment program. so this is something that's being performed in their executive program. the objectives of this study are to understand how to most effectively meet the communication needs of mayo clinic patients, physicians and genetic counselors, so that he we can understand what's required to dlefer this. -- deliver this. upped standing the response of the individuals going through the tests, regarding any kind of followup testing that occurs, any behavior modification, and any impact on counseling, and also, how to establish a positive and successful working relationship between mayo and genetic, so it's an idea of how does the corporation work with a

very well established clinical entity to deliver this new type of information anser advices and so one of the really exciting things about this to me in being a randomized trial is that we're going to get so much information and it's not just in terms of upped standing these parameters, but the arms include people going through this testing directly and sort of mimicking the consumer model, so they don't meet with their physician first, they receive their results onin without any clinical support at that point unless they choose to. there is another model that reflects the way that navigenics delivers this. the results can be discussed with the patient afterwards by phonend a there is the model where the patient goes to the executive health clinic, the if i have significances go through the pretest information and deliver the test results on the other end, so it really is intended to mimic all of the different opportunities out

there and approaches, and see if there's any difference and see what some of the challenges and feedback are. an example of another external collaboration that we're doing, which some of you may have heard of, is called the script genomic healthy initiative and scripps has really led the way in terms of us being able to launch -- this is really a first of its kind trial, it's a prospective study, where up to -- sorry, skipping forward to the next slide. it involves four collaborators currently, so this is scripps, navigenics and microsoft health, and the involvement of microsoft health is to have an electronic health record, where people can upload theirnformation, we they -- they can upload their records, so they have everything

in a centralized location to track thing in terms of impact in termsf clinical outcome. so what the trial actually involves is we are prospectively recruiting up to 10,000 people through scripps and scripps collaborators, and the idea is to run them on the navigenics test, they get the same services that anybody else get, in terms of updates, inters of an on-line web-based genetic report and then for 20 years beis they're going to potentially being followed, i think the goal is 20 years. we'll see how many people stick with it for that long. but we have -- we did a pretest, baseline survey, to get a sense of the -- their health status, what they're interested in learning about, where their anxieties are, their approach t health, and a great deal more information, also including family history information, and then they get queried again,

three months after keeping results, one year after receiving results, and then on an ongoing periodic basis he year orifer few years following that. and i don't have any data that i can currently share with you. the preliminary data is going to be shared at a shag this year, and it certainly will all be published. so another sort of interesting study that we did, it' definitely a smaller scale study, but mbbit is a network of if i have -- physicians in the u.s. and they're very focused on preventive medicine and personalized medicine to the september that it's available. they're a very forward-thinking group, they have a network to sort of share resources and innovations, that the physicians can opt into and so they were really interested in using this kind of service in terms of, you

know, genomic profiles and trying to identify -- or further refine understanding their risks for their patients and so we did a study where we involved three physicians in different parts of the u.s., we enrolled about 40 patients in the study, so again, it's a smaller scale study, and the patients were questioned, the physicians were -- had surveys, both before and half testing, just to y to get a sense of what are their results and what is the iact, because they really wanted to know, is the information relevant, will i be overwhelmed by patient concerns, so i hear this a lot, you know, you'r getting information about, y know, 20, 30, 40 conditions and isn't it this gng to take an hour of a physician's time, and isn't this going to overwhelm a patient and what does this do to the physician-patient relationship. so how do they use this information in clinical practice, and also, how do patients feel about their results?

so this is a very busy slide that i'm not going to go into detail about, but essentially along the x axis, each individual who went through testing, and along the y axi the way you see gray squares and orange squares and esendsly the gray squares represent individual conditions that were identified as being below erage risk beings and the orange conditions where they were above average risk, and so you can see the essentially the relative risk that was increased along that y axis. so the real take-home message from this was that overall, only about 25% of patients had more than one condition, with a significantly increased risk, and so this is something that i think was very useful for the physicians that were part of this trial in the larger network, in terms of understanding focus and what kind of information that they can expect to in terms of time and in terms of what that

patient encouldn'ter looks le. -- encounter looks like, and then they were also curious as to well, what can they do with it this information and so this is sort of a setup slide, b it ows different conditions and where they fall in terms of any type of action that could be taken, whether it was motivation or focus on lifestyle changes, any kind of early screening or secondary prevention that could come out of the test results, and as well as the diagnostic aid, so this just shows a breakdown of some of the conditns and really where they fall. so when the patients were questioned, after going through the testing, 97% of them said they were glad they did this, so it was one outlier who wasn't sure, the 83% said they gained new knowledge that should be helpful for their long-term health. 93% indicated that they would make some sort of change or take action as a result of the test and obviously, this is in

conjunction with their physician and 77% said that they would have a more productive discussion with their physician about long-term health, and part of this is getting back to what dr. korn said earlier today, some of this is about awareness and i've had an incredible number of interactions with physicians and parents and direct to consume he were clients who have really learned new information about themselves, that they wouldn't have otherwise got from famy history, that they wouldn't have necessarily gotten from traditional risk factors, that are covered in their physician visits, and in some cases, the lack of family history knowledge was ust because they hadn't asked the right questions and i've had actual genetic professionals who went through this testing and learned that they had an incredibly high risk, one example is for type two diabetes and this 1 was just floored. how can i have such a high risk, i didn't know, nobody in my family has this, this is what i

would d i would know and i said do me a favor, go ask specific questions and lo and behold, i got a phone call a week later, that this is something that was significant in terms of the number of individuals wit type ii diabetes on the maternal side of the family, but she didn't know about it hand no one had voluntarily shared it. so there's aomplementary here that increases patient awareness hand that can be simply one element of the utility of it. and the last thing i wanto point out is in terms of the concept of doing internal research. at a company, direct to consumer or otherwise. we did an initiative where we did genetic counseling outreach, cause we have a staff of board certified genetic counselors, were available at any poi to help answer questions, to educate patients, and physicians. but we know that we tend to be underutilized and so we really wanted to know, are people aware, that this service exists?

and we tried to make it as sparent as possible. we actually put our pictures up on each person's report, they're assigned a genetic counselor, but i think people don't understand necessarily the value. so this just shows when we did genetic counseling, that the genetic counseling session outreach where we actually pick up the federad reserve chairman alan greenspan -- up the phone and called individuals, it increased the uptake of services three fold and the majority of people that we were actually left a message, so we still don't know what the impact of leaving a voice message is. some of those individuals called us bang and scheduled a genetic counseling session, some did not. but the feedback that we really got was that most o most of theo idea that this service was available, that it was integrated, at no additional

charge. the majority said speaking with a genetic counselor was helpful, reassuring, helped them understand the results. they really felt like they knew what to do in terms of taking this information to their physician or taking any kind of nexttep. they were enthusiastic about testg overall. and they were very enthusiasti many of these individuals it just so happened, when scripps released a large number of results, there were scripps participants, that they were really excited about participating in research, so you know, i think overall, we got very positive feedback, but we also -- it was a call to action, based on this internal trial that we did. that we need to in some way increase the awareness and the value proposition of the support services that have. so in conclusion, i j wanted to say that personally, we are focused on utilizing data to improve our services. so any of the research that

navigenics has really been involved in, the ideal is to enhance or further refine the services or enrich the services and this is certainly consistent with hippa in terms of internal use of information. in terms of the external research and especially if there's any kind of personal health informationnvolved, that we only partner with reputable institutions. i know that that has yet to be defined but i think that's a very high bar to date. and it requires unique irb approval, through the institutionhat's being collaborated with. so the idea moving forward is that any additional collaborations, any other research endeavors, there is an individual consent form that is sent out to those who are being invited to participate. so rather than sign a broad consent form, you don't know how your information is going to be utilized, you don't know which

studies it's going to be involved in, if you opt into research, then you will on an on going basis be notified when there are new things that you can participate in. so it's our way of trying to be as transparent as possible and making sure that people feel empowered in terms of how their information is being used. and the goal ultimately is to make data accessible, not just to any clients or consumers, but much more broad hi. and so -- broadly and so i think there are a lot of challenges in terms of i.t. our model is certainly not for new association discovery, and patent that information and essentially benefiting from that. it is much more on the basis of making sure that we are -- any information that we identify, that we derive, does in some way become publicly available and usable. so i want to finally conclude, and this is just a more broad statement, you know, iave been involved in the direct to consumer conversations now to

the last six or seven years, and it is really interesting, just some of the topics that come up around the round table and elsewhere, that a lot of issues that are raised in relaon to the services are much more broad issues relating to our health care delivery models and electronic medical records and all of these other issues that i think, you know, i just want to end by saying, i think they're great, we need to discuss these issues, but they're not unique. >> thank you, elissa and we will move right off to queions and discussion. i see a group of hands, i'm going to look straight across for a minute at jonathan and take the other three at the table in order. >> so this actually goes to your last point, elissa,hich i thought was important, it has to do with how we integrate the information in the health care system that is understaffed in many ways, particularly with respect to physician time, so just to go back to the mdvip

data, it's what is kwn as often in someires as a boutique practice, that is to say you have to pay an association f to get in, if i'm right about this, it's some -- these entities are $1,500 and up for an annual subscription, which means you're pretty affluent because -- you're paying a company for something that a doctor should do anyway in my view, but that's an offloading some responsibilities on to other physicians, but that's not relevant to this discussion. so there are two things about this. obviously, they're affluent, they're people we know if you're well to do, you're more likely to be healthy and you're more likely to be responsive to your doctor's suggestions. so how much -- how much confidence can we have, this is a rhetorical question, in those results, for a very specialized population, but maybe the other question is, that you can answer, is, how much time was

involved in communicating this information and educating the patient because clearly, you're paying these -- these organizations, they give you a little extra time in the office, but most patients don't have that. >> i think it definitely varies in terms of our experience now, working with the large he were population of -- larger population of physicians, not just in mdvip. the model really varies in terms of how patients are made aware. some physicians have brochures in their office, we have educational d.v.d.'s, you know, that can help patients understand, you know, this type of information. some of the physicians sit down with their patients and could spend up to 10 minutes, i think, that's -- don't quote me o that, but i think that's exactly sort of the ballpark of discussing this as an opportunity and there certainly is some more time on the back end in terms of delivery of

results. you're absolutely right, these are scenarios, clinical scenarios, in which the physicians have more time. the physicians similarly are not necessary live getting reimbursed for their time to offer this kind of service, so you know, there is still that desire to minimum highs the amount of direct time related to offering a service like this. that's partially where genetic counselors come into play in terms of education, but you know, i think that it's a larger issue, and patients who went through this kind of service, you're right, they tend to be more affluent, they tend to be more involved in their health. i think in terms of what we got out of the study, some aspects of it, certainly can be generalized more broadly in terms of, you know, they're only typically one or two conditions that come out of this for somebody to focus on and i think that's one of the real take-homes when we're talking about primary care, but at the same time, you're right, there is more time. >> but i think that's a problem.

people who are poor, have more complex conditions, or sets of conditions, so that's another limitation, i think, being able to generalize from that. pat? joe, david, tim? >> it was a very nice presentation. i just have a few questions. when the specimens that you're lending to other people and collaborating wi for the research, i had a concern about validation of the history and past reports and so forth, because i'm sure if your previous life, you were doing other regular genetic consultation, and so, for instance, if somebody is diagnosed with cancer, we have the pathology report in front of us, what effort do you make to confirm a diagnosis, if somebody has a genetic test with you and says they have a certain condition, so maybe i'll -- if i -- can i ask each question separately or should i have ask them altogether? >> they're all research related. >> there are too many questions. >> and then i was just wondering

about the funding for the mayo and scripps studies, because these sound like studies that are -- nih might fund, because we wants to know, how do we incorporate this new technology or this new service into this, how are those funded and then also what kind of business agreements do you have and where are the data stored, because clearly these are scripps patients who are in their health plan and they're sending off their saliva or whatever they're sending off to you and is there a report that's generated that then goes back in the patient's chart, like the clinical test from a clinical laboratory, so again, it's this gray area of are you delivering a medical service, or are you doing something that isn't medicine? so those were some of the issues your talk raised. >> all right. i might have to ask you to remind me of them as i go. validation of history, we are not currently validatin history. i mean, it isn't an issue.

in terms of when we deliver our own genetic counseling services and we speak with somebody, we try to get as much information and we have people go and connected with family members, but we're not collecting or storing any of that information. in terms of the scripps study, one of the areas where microsoft can potentially come into use is that any of those medical records can sort of be uploaded to that portable health record. we are not personally checking that, it's for t patient and it's also for the researchers. in terms of most of the primary research is actually being done at scripps. we don't just share the same else, but the data that comes out of our testing lab. >> does it get into the chart like a medical report? >> it does not. >> do you have a business agreement with them? i mean, we're talking about pippa and confidential information. >> right. so all of these studies, went

through scrippsib. >> are you considered a -- >> we are essentially considered the lab in this equation. navigenics provided the testing platform. >> navigenics company is the lab for the research? >> correct. >> thanks for that elissa, very nice. i wanted to follow up on jonathan's question. certainly, the participants in these executive health programs are -- have the characteristics that jonathan described, but that raises a question of what we know at this point about the populations that you and the other dtc providers are serving. have you been collecting those data and what do you know about those populations and how different are they fro those in the executive health programs? >> i think the best answer that, it's a broad range in ter of age, i think through scripps, you've gotten a lot of greater

knowledge as to people who are interested in this testing, it was at a signifintly discouldn'ted rate, so it was not, you know, sort of the same barrier in terms of affluence. that some of the services might, you know, might require. we have people in terms of demographic backgrounds, this their 20's through 80's who have tested. it is relatively equal in terms of male-female. most people have a high school to college education or above. some of the specifics with regard to scripps, because that is such a large patient base, are exactly what is going to be discussed at asag, so i'm sort of limited on what i can share right now. spoo [inaudible]

>> let me just limit it to this. what is the navigenics health compass exactly, what do you do? >> why essentially what it is, we look for certain snips, certain genetic variance based on the scientific literature. >> ok. so. >> high risk assessment. >> i might be mistaken, i'm not an expert if this field, but my understanding is that none of them is a major contributor to anything, they are very tiny percentages, so what you're doing, please don't mistake what i'm asking here, you're taking a tiny difrence that gets increased by three fold, so from .3 to .9 percent, and you're selling he it as a big deal to a physician and getting a pient alarmed about his or her proclivity to some kind of awful

disease, and i think that's what you're doing, and i agree that the physicians that you're doing it with seem to believe it, so they're reacting -- >> actually, the way that we describe it, and i didn't have an opportunity to discuss really how we, you know, provide it information, the background to physicians and others, is we're really looking at these genetic markers as risk factors. i mean, you know, so this is not something like the mono again i can side of genetic testing, where you have this marker, you're definitely going to get this disease or not. in combination, these can have some significance, so when you're looking at a multitude of markers for a particular condition, it could increase risk, an many of the physicians that we've been working with and otherwise are very interested in identifying new types of risk factors. and so you kno wavy framingham

data, family risk information that can be used in how to best assess a patient's risk factors, we're sort he looking at these in a similar fashion and so you know, we actually have information where if you look at established risk factors, like hypertension and other cardiovascular risk factors, with you look at the potential magnitude or relative risk of the markers that we're including in this analysis they're similar, they fall in to that one to two relative risk range. some are certainly more, but a few of them are, and so with you present it that way, most of the physicians we've worked with have found this is actually fascinating, because in and of itself, this is not a diagnostic tool, it is sort of a compreheive way to get new information that you might have not other wise know about. >> ok. and the second point is, i really don't see he why you're not -- i mean, i just literally

do not understand why you're not functioning as a clinical laboratory when you're doing this, and why you shouldn't be under the same regulatory restraints that a clinical laboratory has to meet. >> we are. we are a clio certified lab. >> yeah. i have realize that. >> and california certified. always in check. >> hi, i enjoyed your presentation as well, but i have a couple points that i wanted to ask. one of them is that if a company is carrying out trial, say a pharmaceutical company is carrying out a trial, with a set of academics, there is scope for bias, and usually there will be a clear agreement with the company and the academic group about how bias can be avoided,

and ually it's by independents and independets of the result and so i wondered, how that arrangement works, for example, with scripps. although, i d say that that type of trial is exactly the type of trial that could be used to show the clinical utility side. i support the concept of the trial, but i want to know about the independents and the second point i wanted to make and is a general point about all the direct to consumer testing companies is that we frequently hear the advice, we frequently hear the sort of advice which is either on the web site or with a test, going to discuss this result with your physician, but actually, if you heard the discussion this morning, we disagree on the value of these things we don't kw what the value of these things is. how can you expect the physicians or family's physicians are going to be able to understand or have the knowlede to be able to give advice that is really

meaningful? >> i'm start with that last point, which is, i absolutel agree with you, i think that' part of the challenge and we certainly do not have all the answers, i think this is early stage and we're trying to do our best to provide information an training and such. again, we're trying to represent this information as this is not the whole story, this is part of a clinical assessment. there's sort of this ah habmap moment, frequently when i'm working with a physician and you're talking about something that is along the lines of finding out that a first degree relative has this history of a complex disease, or, you know, elevated cholesterol in your patient, you know, that type of magnitude and there's sort of this realization that we know what to do with that kind of a risk factor concept and taking it, you know, i think, again, there's much more that needs to be proven, especially from a cost effectiveness standpoint down the road and what the

clinical utility and outcome is. >> most physicians don't have knowledge to give advice to their parents that is going to be really helpful. >> one of the things that we're trying to do in our limited capacity as a single sort of startup company is again, to do our due diligence if creating all of those resources and infrastructure, but again, i think that's he a much larger issuen terms of creating primary care or point of carrie sources for physicians to use arouenomic medicine and getting back to your first point, essentially the collaborators for the scripps study each contributed their own services, so the actual test chip was donate donated, naviges donated its lab analysi and anas services. >> so the analysis is done by the scripps investigators? >> right. we deliver our service, but everything that is going to be

published and coming out of it study in terms of outcome and data is coming directly from scripps and we don't have any direct conta with patients. >> you may have actually already touched this or it may have been out of the scope -- i'm director of genetics atccess d.n.a..com. this may have been out of the scope of what you're doing with you were just doing your genetic counseling outreach, but you had mentioned that a lot of those individuals were not aware that that was a service that navigenics provided even though you attach a face and name with each profile or you have it all er your web site. did you get any sense of when you contacted them if they were actually aware of what their genetic information meant, because if they're not even understanding there's genetic counseling services, kind of worries me that they may not be understanding relative risk or what their result was or what that puts them in a risk category, high or low and i know it's a lot more involved,

pretest, post test, o did you get any anecdotal information on how they perceive risk. >> i think the information we got people not being aware of the genetic counseling was available, the crux of the issue is people don't know what genetic counselors are, so one of our challenges professionally is to help people understand, well, why would i use a genetic counselor. they deal with pregnancy. there's a lot of misconceptions, a lot of lack of knowledge, those people have they have encountered genetic counseling, don't understand how they could help. so i think that was one of the primary issues, and also understanding that it's just a mprehensive part of the servic and not an additional cost. >> it seems to me if you realized that they didn't really understand their risk or the risk that you're giving them, that would be one of the biggest arguments for genetic counseling services, so if, you know, they couldn't answer that question on what their results were or what that meant, or you know, do they rememberhat this -- what their

risk was before or after the test, that would be one of the best arguments of why we're such a valble health professional. :

>> thank you. i am an internist and pediatrician by training, though currently i'm a chief resident of a clinical genetics grant program at johns hopkins. that said, and is made preclude my being able to return after tomorrow. i actually believe that the vast majority of the information, although there is benefit coming out of the world of genetics and predating the rest of health will be the role of primary care providers. and i do know genetic counselors and i respect him greatly.

i was just wonder what you feel in terms of, and i was at a meeting recently at clinical geneticist and phd geneticist i asked what are we going to do about direct consumer testing and how will we engage this process. d the sound of crickets was deafening. i didn't get that from the audience. so as a genetic counselor who has i think six years on the industry side of this equation, if you will, what is your view of the role or lack thereoof the clinical geneticist community with regard to this ongoing research and integration of this information and helping getting the information to the actual end-users for the primary care providers and consumers? >> it's a great question. i do know that i have all the answers to that. what i will say is, and clearly clinical genetics as it existed is not going anywhere.

it is not going anywhere. however, i think it is really up to clinical geneticist at the how much to broaden out whether it are interested in seeing her a lot kf clinical geneticist just from my experience are pediatricians and ob's. and they are very few adults clinical geneticist. and so i think it's more of a question of where does that profession want to go because there is certainly is room for genetists to be a part of the translation tool as a resource. but i think it is going to be an inherently primary care issue. >> my name is sharon murphy. i am a scholar in residenchere at iom. and my pt life iave been a clinical investigator in academics. and i can measure doctor

questions about your research models here, particurly the highly selected groups of participants that you have and how it generalizable that is. but i have a specific question about the informed consent that you mentioned in your randomness try with the mayo clinic executive. because would imagine a partipant in the executive health program are also highly selective. and if you actually randomized them and gave them the choice is that you had, which is like no discussion, no counseling, or sort of your standard model, or the cadillac model of we will discuss it with you first and after i can't imagine why these smart executives would agree to randomization and wouldn't all want the highly coming in, interactive model. did you use an alternate randomization scheme, how is that steady even feasible? i can't even fathom that. spirit i have to admit that i don't know the specic answer to that. i wasn't part of the

development. it was created actually by mayo clinic in terms of the -- i've seen in. i don't know the details of randomization. inow that this is being offered to a certain number of individuals who are part of that particular program. and when they opt into it and randomized to these different arms. it is a blind randomization. i don't know anything beyond that. >> so i had one easy question, and one sort of probably unfair question. so when you say you remove it from the account information, and in the informed consent, you identify such that the 18 identifiers are not there, and it is no longer human subjects research? do you understand what i'm saying? >> i do. we essentially share the genetic information, which in and of itself can be considered

identifiable. >> so the 18 identifiers are not inclusive and genetic information and therefore when you release it, the identified, it would no longer be human subjects research. or you don't defe it as such. >> i don't think we define it as such. >> you include dhi. >> it depends on the specific study. we actually were not in the studies that we have done today, we actually have measured anything beyond the genomic data with the collaborators because they're the ones who are collecting some of the phi on there and in terms of surveys and such that are being done. >> here is the unfair when. so when we sit here and talk about dpc, genetics, and we heard from david this morning and you two are sort of the representatives for the moment of dtc companies, everything

sounds great and i think so, you know, when you thinkbout the companies competing for market share against each other, which you have to do, one aspect is price, obviously. the other is what you are actually testing for. in tms of the chip or the kind of information and the support, but really somebody over time or a few will rise to the top. and then there's going to be those that had the underbelly where is the kind you turn around and say oh, no, you shouldn't go there. you should go to us. so how do you propose -- how should we think about that aspect wrecks all of dtc companies are not created equally. how do you think through what we

as a country should be doing for, to ensure that what we are supporting in the dtc community is really the most responsible it can be? >> great question. >> i'm sure packwood genomics are two of the best, but that makes me worry. >> i think there are challenges in terms of creating awareness for consumers. and we are all consumers. around, you know, what are some of the questions youeed ask yourself. what is that checklist when you're looking at a company and considering doing testing. and it is everything from what is a scientific validity of what they are offering, what is the type of testing and what are the promises, how clear are privacy policies. did ashley have any kind of

professionals that you can work with. what is the ongoing nature of the service. how do they consider your data. and what your relationship to wh you think is important. i think there is a whole decision-makinprocess there. i know that there have been some of these sort of broad guidelines plished idly by the american college of clinical pathologists, i want to say, or i would have to get back to you on that one. this year that was actually a very nic comprehensive list but i think again making these things more broadly aware to individuals. because how are consumers supposed to know where to go, just in time tt what questions to ask. i think that is one of the challenges ahead. and all of these different questions are not typically what make it into the media which is where people get a lot other information. >> despicable that you tms suggestion on a public website to sort of do the comparison, right? do you know of anyone who has

taken sort of like a sting operation that we heard about for mutagenic -- new to genetics this morning, the same set of people and sent them to 10 companies and sort of looked at, i mean, not making a people. and seeing what kind of information came back and was the responsible thing was? >> i'm sure it is going on. i ow there are lots of individuals, some who are in this room will actually tested with many of the companies and have been sort of their own comparisons and in june, francis collins actually discussed his own experience with going through the testing process and sort of where things align and where they don't and different approaches. but i'm not familiar with any organized effort that is going on but i wouldn't be surprised. >> thank you. dataquick. >> doctor collins did mention

analytical asset of the questn was quite good because it seemed to agree across several companies, and he has, he did test anonymously so we expect one of his samples in our queue as well. and i think that probably all of the people from various companies are testing across the board and doing some comparisons with our own service with navigenics, and in general i think those results are fairl consistent. i think inconsistencies come with a specific snips that get chosen, sometimes a different proxies are used. sometimes a different studies are used. i think those types of issues should come -- should be standardized a little bit better so far as the quality of data that needs to support any particular marker. and i think regulation, some

more regulation, some more openness as well about our proficiency testing to allow people to compare the quality that they are getting. >> i would actually support what david has just said. in the u.k., there was a reporter who sent his dna to three different companies, and then publicized very widely and wrote about the things that he got different results from the different companies. it was very damaging and it was very influential, but in fact, it didn't separate out the issues of whether the genotypes were the same or whether the interpretati was the same. and in fact, there was ever any question the genotypes were wrong. but the message that came across was that the companies just give different advice. and it probably relates to the things that david has just said, different steps are used in different genes with different algorithms reflecting

differences. answer the essential thing it should be to ensure that the genotyping is correct, and to ensure that their our confidence limits for thenterpretation, which are inevitably going to be quite broad and are going to be different depending on the different studies and gorithms that are used so that consumers are aware of those. and i think that the press doesn't always get those stories exactly right. >> we are nearing the end of the day. it's been a ve productive day, and you have been a loyal audience, and have pressed interesting questions. we still have some to address tomorrow. are there any other questions or comments before we clse today? well then, in that case, we are adjourned for the day. see you again tomorrow. have a good evening.

[applause] [inaudible conversations] >> on c-span today a discussion on iran's nuclear program and the implications it might have for stability in the region. we will hear from gore gold, former is really ambassador to

the u.s. that to live at 11 a.m. eastern on c-span. all this week on c-span2 we are in book tv programming. >> one out of three people in the u.s. without health insurance are legal or illegal immigrants. the organization hosted a

discussion on immigrants and health care bill making its way through congress. this is about an hour and 10 minutes. >> good morning. by name is mark krikorian, i am executive director of the center for immigration studi, think tank in washington that examines and critiques of the impact of immigration on the united states. as our name suggests, we don't have views on things other than immigration. e centeras no stance supporting or opposing any kind of reform on health care. our staff and board almost certainly have a pretty wide variety of views on health care, as well as a variety of other issues. but health care being such a big part of the economy and such an

important thing, obviously in people's les, this is a significant intersection between the workcenter does on immigration and something like health care. and there i think we do have a contribution to make. there has been some discussion already of the immigration aspects of the health care issue. from our perspective, that's been limited though because it's been mainly about the issue of legastatus. in other words, will illegal immigrant be subsidized by some taxpayer-funded health care program? and that's an important aspect of the issue, and our speakers will touch on it to some degree or another. but the important thing i think is to understand, the problem if you see it as a problem, of immigration as it relates to health care, it's not strictly

one of legal status. it's not limited to illegal immigration as important as that is. it's the question of immigration over all and impact it has on health care. because illegal immigrants are not different species. they are people like anybody else. they come from the same countries as legal immigrants, saying them is. back, a lot of tim the same people flipping back and forth between legal and illegal status. so to understand, to use a phrase comprehensively, the impact of immigration on health care issue, you need to look at all immigration, not just illegal immigration, as important as that is. and that is what we aim to do here today. our first speaker is probably one of the nation's leading experts on the issue of immigration, steven camarota, the research director here at the center for immigration studs. second speaker will be james edwards. jim is a fellow with cis,

co-author of the congressional politics of immigration reform, and for many years has worked in both immigration policy field, but also in the health policy feel. and so he will have a lot to be able to bring to this discussion. and la but not least is robert rector, heritage foundation. probably the nations leading scholar on the issue of welfare reform, and over the last several years has been doing significant research on the issue of immigration and its effects on public services and costs and what have you. so the three speakers will say their piece and then we will ta to a day from people if anybody has questions. steve. >> passmark that i am trying to. i'm director of rearch at the center for immigration studies here in washington. now as congress and the nation debate health care reform, the impact of immigration is or shou be an important part or component of that debate. now with illegalmmigrants get

access to some new government programs or public option has been discussed to some extent, but the overall impact of immigration has not really been discussed. as mark pointed out we avicenna for immigration studies don't have a position on what form health care reform should take. i am personally sympattic to some of the president's proposals, but that's not the focus of my discussion. instead, i'm going to discuss what the data tell us about the impact of immigration on the nation's health care system. i'm going to primarily rely in this discussion on data collected by the government, and what i think that data is going to show is that it is very difficult to imagine getting our health care house in order without getting our immigration house in order, if you will. in my presentation, as i said, i'm going to rely primary on

government data, the current population survey from 2008, which is the most recent data available. it asks about your health insurance coverage in the previous year, the previous calear year, so that would be how much coverage you had in 2007. the survey is collected by the u.s. census bureau, and is really in most ways our primary source of information on health insurance coverage in the united states for any population will also point out that most of the information that i will cover today is also available at our website, www.cis.org. now and 2007, 33% of immigrants, of all immigrants, legal and illegal did not have health insurance, compared to about 13% of nativeborn americans. immigrants account for by themselves, california 27.1% of

all u.s. residents without health insurance. we can see this in figure one, which is to my right, right here. figure one shows that immigrants are 12.5% of the nations total population, but they are 27.1% of the uninsured. again, this is just the immigrants themselves. if we can keep the camera on figure one just a little water. let me discuss some additional information. accorsi impact of immigration is not just confined to the immigrants themselves. emigrants of course also have children whom they are often unable to provide health insurance for. if the children who are born here, the us-born children of immigrants who are under the age of 18 are included with their immigrant parents, then together as figure one shows,hey comprise 31.9% of all those

without health insurance. now to place this figure in context, figure one also shows that immigrants and their ks are about 16.8% of the total population. so about twice their sre of the uninsured relative to their share ofhe total population. t simply, this means that about one out of every three people in america without health insurance is either an immigrant, legal or illegal, or the us-born child of an immigrant or the total number of immigrants and their children without health insurance is 14.5 million in 2007. why is that so important it is that tells us is obviously is that when we're talking about the uninsured in this country, which is a big part of the current debate we are having, immigration is a very large part of that story. but of course it's not the whole story. it's just a large fraction of it th is often not adequately acknowledged.

there is another way of thinking about the impact of immigration on the side of the uninsured population. we can look at how much growth in the uninsured increased the uninsured is from immigration. a government report that since 1999 the number of uninsured people is up in the united states about 6.4 million. in 2007, there were 5 million immigrants who have arved in the united states since 1999 who didn't have health insurance. so if we just te the 5 million divided by 6.4 million, what we find is that 78% of the growth in the uninsured is attributable to these newly arrived immigrants, or it equal78% of that growth. and if we add in the us-born children who are uninsured, then that figure gets to be over 85%. in other words, if we had no immigration after 1999, most of the growth in the uninsured would not have occurred.

now, immigration does not own impact the size of the uninsured population when we think about the health care system. it also plays a role in the medicaid system. medicaid is the primary government program that provides health insurance to people with low incomes. that goes by different names like in california you may have heard that data can't, but it is really medicaid and some parts there is also a special program for children referred sometimes as schip. but again it is all medicaid. so when we talk about your medicaid, we'r talking about the big program. whever name we talk about it under. in 2007, 19% of immigrants and their us-born children were on medicaid. and we can actually combine the share who are on medicaid with a share who are uninsured and figure to over to my left has of the pie chart that does that.

what figure two shows is that 47.6% of immigrants and their us-born children were either uninsured or on medicaid. that means that almost half of immigrants and their children have no health insurance, or have it provided to them by the government. in comparison, the bottom of figure two shows, if you can see it and i don't know if you can, at about 25%. so about one fourth. so it is one half of immigrants and about one fourth natives and their children don't have health insurance or have it provided by medicaid. now the question you are probably all wondering is why? why are so many immigrants in the united states lacking in health insurance? the large share of immigrants without health insurance is partly explained by the large share who have very low levels of education. about one third of all immigrants, legal and illegal,

did not complete high school in their home countr. which means that they typically work at jo that don't provide insurance, and the resulting low incomes from their lower level of education means they often can't afford it on their own. in fact, among illegal immigrants, we estimate that about 55% didn't graduate from high school in their own country. among all immigrants, legal and illegal, it's about a third. >> we can see imports of immigration through this question by just looking at some simple statistics that if we look at college-educated immigrants, 15are uninsured. if we look at immigrant who didn't graduate high school, half are uninsured. so a big part of the story is education, but it's not just education. cultural and other factors also seem to play a role. if we look at affluent immigrants who have a college degree and compare them to affluent natives with a college degree, they think immigrants

are still two and a half times more likely not to have health insurance. so something else is going on. these are people when i say affluent, it depds on your definition, but i was looking at household of $75000 a year or more. so these are people who should be able to afford health insurance. they have a college degree so they should be up to recognize its importance and why they might want to have it. but again, the immigrants in that position are much less likely to have insurance than natives in that position. ere are some other reason for this. and that is that immigrants often come from countries where health insurance is not that common. or they often come from countries where it's provided by the government automatically. and i think these two factors also play some significant role in my immigrants who would seem very likely to have it given their education and income still often choose not to now one thing that we canlso say is lack of health insurance among immigrants is not caused by

immigrant unwillingness to work. in 2007, about three quarters of all immigrants held a job and that is exactly the same percentage as for coming in, i don't natives. there is no fundamental difference in the shed work. this is not being caused by immigrants, say, sitting home and not being willing to work. rather, the reason so many don't have health insurance is there low educational attainment. there is no single better predictor of how an immigrant is going to do in the modern american economy and education levels. and this is true whether we were to look at well for use, income, homeownership, or health insurance coverage. so far we've only talked or i've only talked about all immigrants and their kids, but what about legal status. in an earlier study we estimated that 64% of illegal immigrants are uninsured, and they account

for about one out of seven people in the united states without health insurance. and if we were to count their us-born children, then it's more like one out of every six people without health insurance in the united states is an illegal immigrant. so these are some big numbers, but it's not again the whole story. began about 7 million uninsured illegal immigrants. that number is aut 8 million when we counter u.s. children. what about the cost? that's what i think a lot of folks are concerned about. we are in the process of trying to delop some more precise estimate, but right now our best estimate is that we are spending about $4 billion a year providing health care to illegal immigrants. adages public expenditures, $4 billion. gets a little more if you can us-born children. now it is also important to note that uninsured illegal immigrant you significantly less in health care than uninsured nativeborn

americans. they are just dramatically more likely to be uninsured in the first place. this is because they tend to be younger an nativeborn ericans, and so health care costs and generally rise with age. the illegals are built to the young so they tend to cost less than uninsured natives. they are just much more likely to be uninsured in the first place. also, although this stereotype is that illegal immigrants go to the emergency rooms all the time, very often. this is not really correct. the problems of illegal immigrants create for emergency rooms is not so much that they go more often than the rest of the population. rather, it is that when they go they are much more likely not to pay. and that's why it's a problem. remember, 13% of nativeborn americans are uninsured. so they pay the vast majority of the time. but more than 60% of illegal immigrants are uninsured. so they often don't pay.

whenllegal immigrants use emergency health care, there is often no corresponding stream of revenue going to the emergency room to offset costs they create. this is the reason emergency rooms gets overcrowded in areas with lots of illegal immigrants. illegal immigrants are using the system without paying for the system, at much highe levels. we can also calculate the cost of taxpayers of the whole thing, of what legal and illegal immigrants cost and benit put in their us-born children, who are uninsured as well, and that's about $11 billion a year from public coffers. now, charity and the illegals themselves and the immigrants themselves pay on top of that, but the cost were estimated at about $11 billion a year. and this takes into account that immigrants tend to be younger and use less care, but are much

more likely to be uninsur in the first place. what if we try to provide medicaid to, say, uninsured immigrants? in that case, the cost would be very high indeed. if we dided to cover just the uninsured illegal immigrants with medicaid, even taking into account their much younger age, on average, it was still cost about 15 to $30 billion a year torovide them directly with medicaid. now providing medicaid to all uninsured immigrants and their children would of course be enormously expensive, perhaps $60 billion a year. now what about an amnesty or what some folks like to call legalization of illegal immigrants? would that sve our problem? that is an interesting question. the president has made statements that suggest that he thinks an amnesty would solve our problem. but the answer is no, it almost certainly would not.

remember, lack of heth insurance is very common among legal immigrants. people who are here legally. in 2007, or than one fourth of those with a green card, that is a legal resident who was not a citizen, did not have health insurance. that's more than twice the rate for nativeborn americans. if we look at green card holders who don't have a lot of education, which again is analogous to illegal immigrants or the illegal immigrants would become if we gave them legal status, 35% are uninsured. now this is better tn the 64% that we estimated for illegal. so in that sense we think that re illegal immigrants would have health insurance, but there's a catch. if we again look at those less educated green card holders in addition to 35% being uninsured, another 28% on medicaid, the health insurance program for the poor that's very costly for the government. which means we haven't really solved the cost problem is we

didn't solve the underlying problem which was that illegal immigrants are overwhelmingly unskilled. not in every case. there are certainly skilled immigrants but we think about 80%, say for example, have no education beyond college. a majority haven't even -- i'm sorry, no education beyond high school. and we think you majority haven't even graduated high school. about 55%, and about 80% are either high school dropouts or have only a high school education. in conclusion, we have to ask the question, can we have health care reform without immigration reform. put it a different way, can you let illegal immigrants stay and avoid the large cost for taxpayers. the answer is almost certainly no. if the illegals stay, the cost will stay as well. in short, we either enforce the law and reduce the illegal population over time, or we just accept the cost, which is another alternative. now if one still favors an

amnesty or legalization, whever you want to call it, then we have to be honest and make it clear that in areas like health care, the costs are significant for letting the illegals stay and may actually get quite a b bigger if we legalize them. it doesn't solve the cost oblem there. as for legal immigration, obviously legal immigrants already here are free to stay, of course. but in the future, we have to decide whether it makes sense to continue to allow in so many legal immigrants who don't have a lot of education. depending on how you can calais, some research shows a quarter of legal immigrants haven't graduated high school and some research shows third haven't graduated from high school. so a very large faction of the illegal flow can be described as unskilled. at present most legal immigrants are allowed in the country because they have a relative

year. this means that most legal immigrants are selected without regard to eir education, whether their impact on taxpayers or the health care system. if we want to avoid large cost for taxpayers in the health care system, we would need to significantly reduce the number of legal immigrants who are allowed in in the future who have very little education. i think there is still one final point that bears mentioning. a large share of legal immigrants on medicaid under large share of illegal immigrants without health insurance should not be seen as some kind of moral defect on the part of immigrants. the vast majority of immigrants, legal or iegal, you come to the united states to get free health care, or to sign up for welfare programs. though that often does happen. and of course as i've already pointed out, the vast majority of immigrants, including tse here without health insurance, hold a job.

they work. rather, the problems i have discussed are a unavoidable consequence of allowing in a large number of immigrants to work but had very little ucation and as a result they, or often their children, are uninsured or use a welfare program like medicaid. if we want to reduce the uninsured population, and avoid large costs for taxpayers in the health care system, we need to enforce immigration laws and reducellegal immigrants, the number of illegal immigrants in the country, and on legal immigration, moving forward in the future wwould need to allow and many fewer immigrants who have little education. barring those two changes, immigration will continue to have a very large impact on our health care system, creang lots of folks who are uninsured, lots of folks who need medicaid, cascading series of consequences. for the system. thank you. >> thank you, steve. jim rex.

>> i think he was evidentrom steve's talk that immigration will affect and be affected by the health reform legislation that is being crafted in both the house and the senate. with 12 to 15 million uninsured immigrants as was discussed. their mere presence means that every provision of the legislation that is designed to extend health coverage to those without insurance will potentially expand as steve highlighted phe taxpayers costs by billions, if not tens of billions or even more. and many immigrant households have children who are automatically eligible for government health care various sorts. even if their parents are here illegally. air in mind, government agencies and nonprofits often only look at things like income levels and other similar qualifiers when

they are enrolling new beneficiaries in public programs, like medicaid and schip. they often overlook when immigrant status, even though that cld disqualify someone from program participation. well today, i will focus my remarks on the main immigration applications of the house and senate, the senate health committee bills. i will also make a couple of observations about the senate finance committee's legislation, although there is no legislation from the committee yet. it's all being negotiated and i will base my remarks on the finance committee effort on its outline of health reform put out just a few weeks back. well health reform legislation, particularly h.r. 3200, contains a number of provisions that open the door to taxpayer funding of immigrants health care.

that for illegal aliens, for legal aliens who are supposed to rely on their sponsor for financl assistance during their first five years in the country, and for certain immigrantshose sponsor other immigrants. first let's look at the taxpayer-funded premiums subsidy. h.r. 3200 title ii of division and a relates to coverage. this section or title of the bill creates a government agency to regulate health insurance. individuals and employers will have to go there through its exchange a for government improve health insurance. it will run the public option, and it will operate a graduated subsidy program. section 242-a. define who is eligible forhe premium subsidy, and how many credits that they can receive to

determine the amount of that premium subsidy. the bill apparently qualifies all lawful permanent resident, regardless of their sponsors pledge responsibility, or the required five years baugher foremost means tested programs. section 242-d excludes reipts from these as counting as lfare. taxpayers will subsidize household earning up to 400% of the poverty level. so section 242-d generally subsidizes many people, including the foreign-born well into the middle class. on the house bill account, that would be up to about $88000 income a year for a family of four. the money doesn't count as welfare payment, as i mentioned,

which might potentially risk deportation as a public charge, or jeopardize their ability to sponsor other immigrants. and the credits are available to sponsored legal immigrants and foreign-bo immigrant sponsors themselves. the senate finance outline indicates that bill will subsidize insurance costs up to three times the poverty income level. let a talk briefly about public charge doctrine, which i mentioned a couple times. out of charge doctrine is a long-standing u.s. policy dating to colonial times, and has been vigorously a part of our immigration policy throughout our history. it's supposed to protect the country from importing people who become a burden on siety. would-be immigrants are denied

visas on public charge grounds. they have too low income or whatever, or have certain other factors that would cause us to not give him a visa. and this goes on continually. and a very few immigrants anymore are deported for the reason of being public charges. so it's pretty much at once here you are safe. world in 1996 welfare and immigration reforms strenhened public charge doctrines somewhat. immigrant sponsors now must sign a legally enforceable affidavit of support. they must have earnings at least 125% of the federal poverty level. and their household income is deemed available to the immigrant who is applying for federal means tested programs.

because h.r. 3200's provisions to spend some of welfare reform requirements, it tends to weaken public charge doctrine. the bill creates a situation where onsors of iignts and the immigrants themselves can collect taxpayer dollars for health coverage, when immigration policy would require that they be more self-reliant. section 242 of the bill state illegal aliens are excluded from receiving federal payments under the affordable credits premiums subsid but there is nothing in the bill requiring screening of affordable credit recipients, such as screening them through the save system. congressman dean heller offered an amendment in the ways and means committee to correct about, but i was defeated along party lines.

senate legislation omits the same eligibility verification requirement that would ensure that only lawful immigrants and u.s. citizens benefit under these programs. well now let's turn to medicaid and schip provision. title vii under division b. of the house bill h.r. 3200 expands medicaid eligibility to those earning a third above the official poverty level or the minimum income that is required of immigrant sponsors, which i mentioned is one and a quarter% of the poverty level, that falls below the sponsors eligibility for taxpayer-funded health care for the poor, at one and one 3%. the health bill expands medicaid eligibility to 50% above the official poverty rate.

that leaves an even larger graph for immigrant sponsors who are poor enough to be on medicaid to still sponsor and bring in additional visa holders. again, this aspect of the legislation has an undermining of fact on public charge doctrine. section 1702 of h.r. 3200 explicitly prohibits states which administer medicaid and schip from makinfurther determinations about new medicaid enrollees eligibility. one such provision requires states to presume someone's eligibility. in other words, these provisions set up a system that amount to the kind of enroll first and don't ask questions later. in the energy and commerce markup, congressman nathan deal, offered an amendment to correct

this. the deal minute would require a check of the eligibility on immigration and citizenship status of those being signed up for medicaid. it would apply the same verificatiol standards and use the same existing verification system that's in the medicaid statute. this taxpayer proteion amendment lost on a largely partyline vote on a single vote. senate legislation similarly oms any verification requirements of one's eligibility. finally, let's look at the mandate exemption. the finance committee outline like the help and the house bills mandate that individuals must carry health insurance or else face a fe. the finance outline says that illegal aliens will be exem from the individual mandate.

well, that's interesting but it sets up a system where you have americans and legal immigrants who have to have coverage, o else pay a fine. but illegal aliens would escape both the mandate and any fine for being uninsured. it appears that this sets up for illegal aliens to be free riders of sorts. they would still receive taxpayer-funded medical services at health clinics and hospitals required to serve those presenting with a medical emergency. t, illegal aliens would be free from any responsibility or sanction that other people would bear. so to conclude, essentially these bills expand government health coverage and taxpayer payer subsidies for government controlled private insurance and

the public option. they make it easy to enroll new people in government run health programs with what amounts to built-in willful ignorance, about characteristics which would be disqualifying. such as being here on a temporary visa, or being still under one sponsorship requirements. or being here illegally. and the bill makes no provisio provisions. the bills make no provision at all for ensuring that only lawful u.s. residents and u.s. citizens benefit from these health programs. in short, the health reform plans that are on the table will create new incentives at least marginally for illegal immigration. they will reward illegal aliens by giving them health care at no expense to themselves, and they will further weaken the important publ charge doctrine that long served our national immigration policy so well.

>> thank you, jim. robert. >> thank you very much. as we have noted here in the previous comments, immigration in the u.s. is primarily at disproportionately skilled immigration with one third of all immigrants lacking a high school degree and among illegals perhaps 55% lackig a high school degree. now, if you believe that in the united states a person who lacks a high school degree pays more in taxes than they receive in government benefits, then you would believe that this system is good for the u.s. taxpayer. on the other hand, if you believe that someone who lacks a high school degree possibly receives a smidgen more in government benefits than they might pay in taxes, then you would recognize that the system, both legal and illegal, is very costly to the u.s. taxpayer. another aspectf this is that since immigrants, both legal and illegal, are disproportionately less educated, they are reducing

the average educational level of the u.s. workforce. if you believe that reducing the average education level of a national workforce is good for an economy, then you would believe that the current legal and illegal immigration systems are good for the u.s. economy. if, on the other hand, you have antiquated believe that having a higher educated workforce is good for economy, you have to include that both legal and illegal immigration is currently unfortunate in terms of quality economic growth. in the united states today, our country spent nver $700 billion on mns tested welfare and assistance. thats, cash, food, housing, medical care for low-income people. these are programs such as medicaid, public housing, under income tax credit, temporary assistance to needy families. of that, roughly $100 billion

plus goes to lower skilled immigrants. they are a substantial and significant portion of the u.s. welfare system. the way that i would characterize our current immigration system, both in its permissive entry of illegal as well as the high level of very low skilled immigrants that come in through the legal immigration system, is itas if it's a outrage. spending 5% of gdp on means tested welfare is not sufficient. we need to reach out and bring more people into the united states so that they can enroll in this system. the bottom line is that the u.s. has a very generous system of support for less advantaged individuals, and it would be very difficult to provide that level of support to essentially an unlimited inflow of low skilled individuals from the third world. but that is what our immigration system currently does.

if we were to look at the current health care reform legislation, this takes an unprecedented step in opening up the u.s. welfare system to illegal immigrants. under the current law for really forever, we have had a system of identity checks that largely prevents adult illegal immigrants from getting onto these means tested welfare programs. you have to be able to substantiate that you are in the country legally, and youave to be able to substantiate if you are a legal immigrant that you ha been here over the time limit for eligibility for health care reform legislation turns that on its back and tramples it into the dust. it basically says we will not verify. we will not check. we have a complete open door for every illegal immigrant current and in the future to simply enroll and receive benefits under this program. we not only will not check them

at the door. we will not check them once they begin to receive the benefits. i would say if you are going to do that with respect to health care, why would you not also established the same precedent with respect to food stamps, to public housing, to the earned income tax credit a so forth. and they believe that is in fact the direction that the congress wants to go to to allow all welfare benefits to be fully available to all illegal immigrants. th seems to me to not only set up a substantial cost, the cost of that of providing medical insurance to all of the current uninsured illegals i believe is on the tune of close to $200 billion over the next decade. but that it clearly would have a magnate of fact i believe the drug even more illegals into the u.s. and the uted states. and we'll have a president of sanko into the u.s., you get free medical care. will absolutely not check who

you are or whether you are here lawfully. i would say that this uld also create a further precedent of what i would call medical tourism. what could happen under these bills if they became law? is it that someone could enter the u.s. either illegally in the future or into the u.s. as a tourist in the future who has a significant medical condition that requires health care they could then declare themselves to be eligible for these programs, and roll in this public auction, begin to receiveedical care without ever being checked as to whether or not they are in the united states lawfully or eligible for these programs. i believe that under this legislation, we will begin to draw the seriously ill from all over the world to begin to come here to receive free medical treatment. and once you hook these individuals up to the dialysis machine, or whether it is we are very unlikely as a society to pull the plug and say get out of here, it is absolutely mind-boggling precedent that is

being established here. if we look over all at the cost of means tested welfare, that is again, a debt is targeted to lower income people, medicaid, public housing, food stands and so forth, what we've found is that over the next decade the united states will spend $1.5 trillion on means tested welfare for lower skilled immigrants. those with a high school degree or less. $1.5 trillion. half of that or around $750 billion over the next decade will be for medical care for lower skilled immigrants, primarily through the medicaid program. this is a massive expenditure at a time in which the united states is already going bankrupt as a nation. now, the health care reform that is pending in the congress would

add additional costs on to that, not only by making the illegals eligible for free medical care, but also by extending medical care to all of the legal immigrant who currently do not have it. steve's numbers here are very good showing that about a third of the uninsured are immigrants, but i would say that if you look at the lower income uninsured, which is where the core of the expenditure will be, that number is probably significantly higher, perhaps as much as 50% of the low income uninsured are in fact immigrants, both legal and illegal. we are about to ip legal into the system up nationalizing u.s. health care, creating a government monopoly health care system, primarily or at least very substantially in order to provide health coverage to immigrants. . . ealth care

reform, we have the fantastic cost asociated with pending amnesty. one of the things tha we know about illegal immigrants is that very few of them are eligible. if you are an illegal immigrant, you come he during -- you're going to find some way of becoming legal or you're going to come back home when you are of retirement age. one of the clear things that anx amnesty bill or earned citizenship bill does, at the point of passage, it immediately it immediately takes all of the current illegal immigrants and makes themotentially eligible for social security and medicare. an astonishing out-year cost, all of which is hidden in the normal budgetary calculations, which only calculate the cost of

amnesty over a 10-year period. you're going to put all these individuals in t social security and the medicare systems. now the cost of that once they hit retirement age which will occur in about two decades would be around $2.5 trillion. of that around $1 trillion would be for medicare alone. not only are we spending enormous sums on the current syem, enormous on the current low skill immigrants but with healthcare reform, we will pile much more money on top of that and if we add amesty on top of that, we will be adding another trillion dollars in future expenditures, $2.5 trillion if you count in social security in as well. the united states of america, in my mind is now going bankrupt. we are beginning to look like argentina or something like that in terms of the public debt we

are racking up here at an unprecedented rate. a substantial portion of this national debt is due to the fact that we are bringing in very low skilled individuals through both legal and illegal immigration, providing them with a vast array of government services that they do not pay for and basically piling up the debt on our children in order to pay for those services. thank you very much. >> thank you, robert. steve, did you have a question? >> i have a quick point of clarification for robert and jim, who've studied the legislation itself. so what you're saying is in effect, if i'mright, is that they could have -- if they had the public option or some new government program, whatever at is, they could have created a situation where like with other programs you you verify whether the person is eligible, some legal immigrants aren't eligible because they haven't been here and illegal immigrants are not supposed to be eligible, their children are. but they chose explicitly to

make them eligible in the sense that they took out the enforcement but they also said they weren't supposed to gett so it's kind of like -- would an analogy be a speed limit on a highway and then a pronouncement that police will never patrol that highway. is that sort of what we've kind of done? would you say this session in -- in this legislation? >> it's difficult to know the motivation for omiing the rification provisions. you know, i think the one provision that is in there that i mentioned that excludes availability but doesn't require a way of checking it. yeah, it's kind of like the highway sign -- the highway marker that you mentioned. but it's also, i guess, similar to -- have you ever seen a no

trespassing sign in the middle of the woods and there's no fence, there's no, you know, farmer with a shotgun or whatever. it's just there. and there's no enforcement, whatsoever. >> i'm sorry. go ahead. >> well, i would say the motivation is clear. i mean, it couldn't help but be clear. this is such an unprecedented step within the u.s. welfare system to basically say, you are not eligible but we will not check, wink, wink, nod, nod. we've never done that, okay? and, gee, i wonder why that provision is in there, especially, since on two occasions they deliberately voted down amendmes that said, well,hy don't you apply the traditional checks that are -- by the way, these are on over 71 different federal welfare programs, okay? you use this type of check to determine whether the person is eligible. i mean, that's what you do. it's not only just a check for

illegals, it's also a check for employment verification, okay, so if you say you come in and youhave income of x, well, the government determines whether your income is that low or whether you are, in fact, eligible. th bill says, no, we ain't checking nothing, okay? you come in -- it's self-proclaimed. if you proclaim that you're eligible for thi we're going to let you in. andf you proclaim that you're a u.s. citizen or that you're otherwise eligible, you're in and we will never check you. there's only one reason for doing that. and it's because they deliberately intend all illegal immigrants, both current and future, toeceive free medical care at the expense of the u.s. taxpayer. >> thank you. we'll take questions from the audience now. yes, ma'am. >> hi, penny with c & s news. when you referred mr. rector to the $1.5 trillion in the next

decade for lower skilled immigrants, are you talking about all or -- i mean, illegal and legal? >> yes, that's all. >> okay. >> it would be higher -- much higher if you granted amnesty to the illegals but under the current system, recognizing that lower-skilled immigrants take about 15% of total means-tested aid that's cash, food, housing and medical care, that would be at least $1.5 trillion over the next decade. >> which immigrants again wou that? >> it's basically those with a high school degree or less. >> but are they legal or illegal? >> probably the majority of that is for those that are currently legal. >> thank you. yes, sir. and if you could speak up and identify yourself. >> brendon with rtt news. two questions, one to mr. camarota, did you find anything -- any difference between illegal immigrants and

gal immigrants in terms of their paying back these emergency services? you mentioned illegal imigrants tend not to pay for that. and do you think that might potentially change were they legalid? and the second question is for mr. edwards. have you looked at the agricultural visa workers and the provisions of how healthcare reformight affect that segment of the low skilled population and the potential guest workers and that kind of thing? >> the statistics i gave are what taxpayers pay. remember, uninsured people still pay billions of dollars for their care. they go to the doctor, they go to the emergency. they just don't pay for most of it and the total sum of what taxpayers pay ishought to be around $43 billion, around $4 billion of that is going to illegals. some might go to more legal immigrants. i don't think we have a good body of research showing that legal immigrants are more liky

to pay for services -- i don't know of any that says tha when they're uninsured. what we do know is that legal immigrants who are unskilled tend to be more likely to have health insurance than illegals who ar unskilled, but the big difference seems to be medicaid. what happens they get insurance but they get it entirely at the taxpayer expense. they move from being uninsured to medicaid, so if your concern was they didn't have insurance and now they do and that's positive. that might improve their healthcare outcomes if your concern is the taxpayer, then that's very bad because being on medicaid is much more expensive to taxpayers than being uninsured. >> jim? >> one of the bil -- i believe it's a senate bill but i may be mistakenn my recollection states that lawful permanent units and u.s. citizens -- one of the bills, maybe the house

bill, i may have that reversed, says that -- and so that's a permanent immigrant visa holder. the other says that it includes pretty much anybody who's here under color of law which includes everybody who's legally here on temporary protected status, nonimmigrant visas and so forth. so one -- one of the bills does contemplate separating and not extending coverage but again, without checking and verifying that nonimmigrant visa holders, temporary visa holders would not qualify, whereas the other does say anybody who'sere legally even temporarily. >> and that would include foreign students as well as farm workers, illegal aliens given temporary status, all kinds of

people an there's actually millions of immigrants here that we describe as immigrants but are not green card holders and they are legally here but temporarily. next questio yes, sir. over there, yeah. >> in reading the memorandum, the second bullet point says, immigrants account for 27% of those who have health insurance and then at the bottom it says legal immigrants account for 27% and the one up before says 64% of illegal immigrants were uninsured. could you explain? >> yes. one is what fraction of immigrants don't have health insurance? the other is, we're trying to measure their impact on the system. if there are only 10 immigrants in the united states, just 10 people, and hal didn't have insurae, they would be a trivial fraction of the uninsured so there's lots of immigrants. one statistic is how many people of immigrants are uninsured?

the otheris, what fraction of the total they comprise, okay? so in the case of immigrants and their children, the two statistics are somewhat close. but the point is, about 33% of all immigrants, just immigrants now, not their kids -- 33% don't have health insurance. and they comprise 27% of all people without health insurance. do you see the difference? a third don't have it, and they make up a fourth of the total. there are two different measures that are important to kn, you can't know one without thinking about the other and that's why the two statistics -- mbe we could say it a little clearer here, you know, make it cle we're talking about total versus what fraction don't have it but that's how it works. >> next question, yes, sir. >> michael for council of immigration reform. i first have a comment. >> speak up first. >> okay. a comment for mr. rector and a question. i eoyed your importation of poverty, a book of charts which

is a seminal work on immigration in this country. second of all, when you talked about the iact of amnesty you mentioned it would costn out-year cost $2.5 trillion roughly for impact on socl security, medicare, et cetera but in your estimation of haggle-martinez bill, that the estimate of 20 million there would be 60 million who would be sponsored by chain migration or family unification. is that amount included in your 2.5 trillion for the out-years or not? >> no. the 2.5 trillion would simply be the cost of providing earned citizenship to the current illegal population. the bill last time around didn't have those massive expafsions in legal immigration, which the bill three years ago did have. which would impose even greater costs.

the bottom line to understand this is to recognize that the u.s. has a very large and robust welfare system. we don't really recognize that because it's over 71 different programs. and in order to calculate the cost of those programs you have to go through a 1300-page budget appendix and count them all that. social security and medicare appear on two lines in every budget item. in order to find the cost of aiding poor people, you have to go really and really dig. but when you add all those things together, the cost of aiding the poor, of which medical care is roughly half of it, it's three-quarters of the social security and medicare. and it's grown as rapidly a medicare and social security and virtually nobody understands that because this welfare system is like a jigsaw puzzle in which the pieces are never put together, okay? and nowhe bottom line

vis-a-vis immigration is that this system along with other government systems -- it constitutes a massive transfer of resources each and every year from the middle class down to the less advantaged. we can barely afford tdo that for disadvantad, lower-incomed americans, okay? and what's happening with immigration is that we are importing huge numbers, both legally and illegally of people that fall into the eligibility criteria of these programs. you don't have to sit at home and not work at all. you just have to have a low income in order to generate this flow of income. and theore legal and illegal immigrants that we have of that lower-skilled status, the greater the cost to the u.s. taxpayer. an immigrant who does not have a high school degree, receives $20,000 more in government benefits and services than they pay in in taxes each a every year and they do pay some taxes.

but by and large, that gap a of $20,000 has to be paid from someplace. right at the moment, we're borrowing it. and for the next decade we're going to be borrowing it and putting a debt on the future in order to pay for it. >> thank you. our next question? yes, sir. >> mr. camarota talked about there's a problem of the educational level of people coming into the country as immigrants. how do you square with that with the fact for demand of labor is for low skilled work? and have you done any cost benefit analysis on what the benefits the economy are of that worknd also what the cost would be if you didn't have workers to do it? >> yeah. as the level of unskilled immigration has gone up, one of the most troubling trends in the u.s. labor market is that less-educated americans work less and less. if we look at americans who don't have a high school degree, the share who hold a job at any

one time o in the labor force has declined dramatically. there's like 7 or 8 million of them now not in the labor force in which a very large fraction should be. if we look at those who have a high school degree, especially the young, 18 to 29 years old, the share of them holding a job at any one time has declined by several million as well. all totaled, america has 25 million and even before the recession, about 22, 23 million, people with no education beyond high school, who are 18 to 65, not working. now, the totally illegal work force is 7 to 8 million. so it looks like we have this enormous supply and their situation has deteriorated dramatically. where we've seen this big loss in work is among teenagers. teenagers ed to work at very high rates, say 16 and 17 years old. the last 20 years has seen a massive decline, both in their year-round employment and even in their summer employment.

and that's about another 8 million not working at any one time. so, you know, roughly speaking if only one-fourth of the less educated were not working or native-born were not working and throw in a few teenagers you could repla the whole illegal work force of 7 or 8 million people. the other thing that's going on in the u.s. labor market that i think most people think is equally as troubling is that wages and benefits for people at the bottom has deteriorated dramatically. so not only are less educated americans working less they're making a lot less. there's some astonishing statistics. let me give you one of my favorite which i have come across, meat packers. a difficult job, general done by people without a lot of education. their real wages are 45% less today than they were in 1980.1x now, in general for say high school dropouts, wages are about 22 to 25% less than they were in 1980. so my take on this is if we had lesson skilled immigration and we paid workers more and we

treated workers better, it appears we have a huge supply of unskilled workers to fill those jobs, again, if properly paid and treated. and i thk from an equity point of view for our fellow countrymen, you know, that would make a lot of sense. but instead we sort of adopted this other policy where we flood the unskilled labor market, keep wages very low and allow nonwork to become very common among less-educated natives. now, there are other issues going on there. other factors arek÷ negatively affecting less-educad penpleá( in this country. it's not just immigration, but i think immigration is a part of it and most importantly it's something we could do something about. we could change our immigration policy. globalization, the japanese setting up factori in malaysia and displacing american workers is tougher so had whereas reducing your iigration level or reducing your unskilled immigration level is at least something is tangible and we could do something aboutb3ía >> i happen toork in -- on both issues of welfare and poverty and immigration.

and so i get this very paradoxical message that i can go to one group working on welfare and poverty and be told in the morning that the are absolutely no jobs for lowered skilled americans in minneapolis or milwaukee or whatever. and then i can go to another group in the afternoon and be told that we have to have massive low-skilled immigration because amicans won't take these jobs. we really have to reconcile these things. if you were to go to any discussion, for example, on black perty and black family structure in the united states, the overwhelming consensus particularly in the left -- of the major problem is low wages for black male workers and a lack of jobs for black male workers. 20 years that is t prevailing factor. that's the explanation about why family has declined in the inner city, why we have poverty, why we have welfare and so forth a

at the same time, we're being r we need to import 7 or 8 million high school dropout from abroad because we dot have enough workers to fill these lower-skilled jobs. at the same time, when you're looking at the wages for theseí% less skilled males, they've almost been flat for several decades. but somehow we need to have more and more of these workers. also it's a misnomer to suggest that because immigration makes the economy larger, somehow the average citizen benefits from that. it is true that immigration and low-skilled immigration does make sort of a larger pie but the immigrant eats about 90% of that share of the larger pie through his own wages. and it does not confer befs on the rest of us. it does confer costs on the rest of us because almost all of these low skilled immigrants will impose governmental53t cos that they cannot finance through their own taxes. >> let's take a couple more questions.

yes, sir. >> harry from the university of california. this is for mr. camarota and mr. rector. you mentioned that immigrants in their home countries don't have much knowledge of healthcare systems. they don't have healthcare or they receive healthcare from the government. and i'm wondering# what the ri of medical tourism is, whether or not we're aware of e sysm to go through to get medical coverage in the u.s.? >> yeah.6dq that's a great question. that's a reasonable question. i man, i think -- i'm not sure about the risk -- it can be a lot of people numerically and it can be millions or even billions of dollars, whether it would be a very large fraction of the whole healthcare pie. but, remember, obviously, people who would engage in healthcare tourism would be mostly the most affluent. who find they can't get insurance in their home country and they're aware of it and they can afford the plane ticket. they can afford to navigate the visa process which obviously millions and millions of people do every year.

so what you would not expect is a person, you know, who's not literate coming here and trying to do medical but what you would expect someone who's college indicated in india and have a condition and buy a tket and come. that would be more of a phenomenon than the most educated with one very notable exception, maybe at the border there would be peopleho come across the border to get medical care. there are -- and that would be another example. there are about 400,000 births to say illegal immigrants in the united stateeach year comprising 1 out of every 10 births in the u.s. what percentage of people who arrive pregnant, women who cross the border or overstay a visa pregnant. it could be a large number, 20,000. and it could ct taxpayers millions and it certainly does but it's hard to get a handle on how big that is potentially but as robert pointed out, is that if you don't verify, which is

what this new bill considers, that could grow much larger than whatever it is now. >> i would consider the precedent to be quite strong indeed because we've already done this or very similar. in the 1980s and the 1990s we allowed elderly immigrants to come in and get onto a program called supplemental security income. okay? in fact, elderly immigrants coming to the u.s. to retire on this welfare program -- they get supplemental security income and medicaid was the fastest-growing element in u.s. welfare. it was absolutely unprecedented and what we found, and this was -- we had testimony on this as part of welfare reform in 1996, that all across southeast asia there were actually publications in the native languages, in chinese and other languages, on how to come to the united states and retire on ssi.

in chinese. okay? and we have testimony before congress to that effect. one of the things that said in welfare reform was that welfare reform said you had to be a u.s. citizen to get ssi. and that sort of checked that massive inflow but the idea that no one is aware and are not attracted to these benefits is not is absolutely historically refuted. not onlyre people aware of this but you actually have agencies and organizations set up to inform them and to draw them in. another aspect of this would be that any legal immigrant who was here would under this system have the absolute option of bringing their parents and their grandparents in, declaring them eligible and receiving free medical treatment understand this system. you could retroactively go and try to get some of that back.

the record of achieving that is absolutely terrible. okay. so what you're going to do here at the very least is create a mess which will -- will be exploited and which will ultimately have to be cleaned up at some point in the future after you already spent a lot of money.4 >> let's take one final question. yes, sir, in the back. >> i just wanted to --. >> speak up a little bit. >> in studies, and there are very interesting studies but did you consider the cost of not insuring these people who are already here and especially in light of the h1n1 virus and various other viruses such as that? would it not be less costly to the nation to actually cover these people and not expose the citizenry to even more health costs? >> well, let me answer it this way. i do have an estimate -- let's just take illegal immigrants right now we're spending $4 billion on their healthcare.

let's say we gave them medicaid. given there are about 7 million but they're relatively young so they're not that expensive relative to other people on medicaid so you're still looking at $15 billion. so it would be much more expensive to cover them on medicaid. but their healthcare outcomes might improve. that would be one thing. obviously, vaccines and medical care is covered. if you're talking about communicable diase, that would be the advantage. people who are uninsured do cost taxpayers money but government insurance costs a lot more. but their healthcare outcomes improve. we will not save money if we insure folks. that's what we have to understand. people who have insurance put off care and they pay some on their own. taxpayers spend billions on them as well but they just don't get anywhere near what someone with actual someone with insurance like medicaid. >> when lyndon johnson launched

the war on poverty, welfare spending in 1964 was about in today's dollars about $70 billion a year. it's now 10 times higher. it went from 1% of gross domestic product to 5% of gross domestic product. and the next decade it'll be 6% of gross domestic product. in each step of that process we were told we were spending the additional money in order to save money. and, boy, it's a good thing we saved all that money. the bottom line is that as long as you have this type of lowered skilled immigrant in massive numbers in the united states, either legally or illegally, they're going to cost the u.s. taxpayers a lot of money one way or the other. to the extent you formally incorporate them into these gornment programs, those costs go up rather rapidly. >> i'll just make one observation. the congressional joint economic

committee just recently came out with a report, and it looked at how well estimates, cost estimates, had done on several of the programs over the past 40 or 50 years. the estimates on the front end of, say, medicare, front end of various other health programs, and i believe the joint economic committees identification of that cost was that it underestimated in most every instance by anywhere from like 1.6 -- 1 t 1.6 ratio all the way to 1 to 16. so -- if you're underestimating anywhere between that and 16 times underestimating, that is a huge risk on unfunded liabilities that you're potentially going to take on and

this is just one element of adding that. >> okay. well, thank you. thanks to all the panelists. all of our publications as well as the transcript and video of this event will be on our site at se point relatively soon, which is cis.org, and thanks for everyone for coming. [applause] [inaudible conversations] ..

>> you're watching c-span two. coming up a review of reparations that health care officials are making for swine flu. followed by how high school students are preparing for college. and a national college entrance test. then a discussion of how the federal government is adapting to social media, such as twitter and facebook. live today on c-span, a look at the implications of japan's national election. the opposition party won after 54 years of control by the liberal party. a former diplomat discussions

the impact on this country. tonight at 8 eastern washington journal explores how hospital deal with health care and how new legislation might impact them. and the "washington journal" returns at 8:35 in the morning for live coverage at emergency here.

>> the government concedes that the destruction of documents in antis pace of a proceeding was not the crime in the fall of 2001. based upon -- >> something different is going on here and what goes on in the capitol building or the white house. and you need to appreciate how important it is to our system of government. >> this is the highest court in the land. and the framers created it after studying the great law givers in hiory and taking a look at

faith worldwide was important for judicial branch to do. >> i put in as much blood, sweat, and tears as the little cases as i doo on the little one. you don't sit here to make the law and decide who wins. we decide who wins under the law that the people have adapted. >> we will be surprised by the high level of colleague quality here. >> it any of us want to hear the cases, four of us choose, we'll hear it. >> why is it that we have an elegance for a structure? it's to remind ushat we have an important function, and to remind the public of the importance of the law. >> i think the danger is that sometimes you could come into a

building like thisnd think it's all about you, or that you are important. and that something that i don't think work wel with this job. >> supreme court week starting october 4th on c-span. >> and now a portion of a conference on h1n1 swine flu. health officials say they are expecting the virus to spread this fall and winter much like it did earlier in the year. this is an hour and a half. >> good morning everyone. we're going to go ahead and get started. we'll close the doors and get the presentations on the road. once again i want to welcome everyone here this morning.

i'm name is david osman the chairman of the facilities in the last day. now we're going in day two. i want to take a look at the programs, and i going to make some updates and announcements. i want to make sure you have the updated information as we go through the day. if you can look on your last near the end of your program, that has your break out sessions from day one and day two. look on your day two of your session break out, i want to make a couple of announcements in reference to breakout sessions on day two. look down on the page to number eight where it says steven, he's not making a presentation today. he made his yesterday. but you will have is jim acres.

he will be making his presentation. there was a typo. i wanted to make sure to tell you to remove number eight. he made his presentation yesterday. and it will just be mr. jim acres who will be presented. and he'll be in the 3:15 to 4:45 time slot. the other change will be -- we're looking at basically part of our panel. we're going to make an adjustment here on times and we'll see how time runs. it will be after our coffee break. panel will be set from 10:45 to 12. we'll be making some minor adjustments around 11:45 to 12. behave a major sponsor that has

an important presentation to make. just make some notes to that in your schedule. for those of you who did not know, and i just found this out today, i wanted to make sure it wasn't a joke, we have an ipod opportunity for those of you who didn't know that. if you have yourusiness cards before you leave, on into the brown table there's a black box. if you already done that, then you know. we'll make the announcement today. get your business cards in the slot for the ipod. for those of you who have travel from afar, for transportation reasons, we have out the the desk, there's information about the transportation starting at noon today every 30 minutes transportation back to the airport for those who need transportaon. there will be signage placards on the transportation vehicle

using that route. if you need information on transportation, by all means welcome ask at the front desk. there are other persons about e power points, we're reviewing all those again today. looking at those and seeing what's missing out of the program and making sure we have those on the site who you can load those probably in the next 24 hours or so. you can go on to the web site and be able to upload those power points that are missing from your package. the other piece i want to make sure that you know is that we have an opportunity to see some very special tngs today and hear some very special presentations. take advantage of all the special information that you have and hopefully you had some great information for the last 24 hours. how did everything go yesterday

for a1? [applause] >> good. enjoy the good? i'm hoping they have some more good dessert today. i want to thank our sponsors. we have three of our sponsors today, ecolab, celban, and we're very, very happy to have them and we're very appreciative of their support. which brings me t the next introductions. we're very honored to have one of our major sponsors today. m going to pass it over to the chair of the ceo of the organization. but i'll make an introductory first. he will be standing here and doing what i'm doing. and you guys will be grading him, and i know he's ready for that. i'm going to introduce him

first. he's smiling. so he's ready. his name is gary dicelman, he's the president and ceo. following the origin of electronics performance in 1987, gary? they gave me the wrong -- okay. well, anyway. ladies and gentlemen, i'm going to let him introduce himself sie i have the wrong guy. forgive me on that. okay. ladies and gentlemen, the ceo please. >> go on. that sowned -- sounded pretty good i am tom fagan despite what my

colleague thought. and i am president and ceo of energex systems hopefully with all of the other things that are going on here, you'll never haveo -- what we do what is compassionate use therapy for h1n1 and other influenza viruses. we started about five, six years ago going to the fda with a technology that uses ultraviolet light. we started our human research with hepatitis c, we are now doing an hiv trial, and we are about three years ago the fda came to us after seeing some of our -- the results that we had

and asked us if w would do some work on influenza. their original fare was in5n1 panellic, as we know we have an h1n1. that's where we have started with our research. we have some interested results. later on in our program from the louisiana university will present that to you. we'regoing to start with a panel. hopefully i will get the panellest names. our first panelist is dr. stephen aldridge, he's president and ceo of bioresearch llc. he's leading independent research based in cambridge,

massachusetts, serving corporate and nonprofit government clients by providing independent expert research and consulting socl and economic consequences to the biological diseases. our second panelist is dr. robert lee who is is -- dr. lee worked in the area of disaster preparedness at the pan american health organization. he was the manager of the emergency operations at the med -- headquarters and also for avian influenza pandemic and preparedness in the caribbean. dr. lee?

and our third panelist will be jeffrey rueben, mr. rueben has been involved in health care administration and planning for over 35 years in both the private and public sector. his experience included disaster, medical services, and response management, public heath progr and primary clinic management. he currently serves as the chief of the disaster medical services of the california emergency medical services authority. mr. rueben? and we will begin with mr. aldridge. >> thank you. well, good morning.

i'm under some time constraints so i'm going to go very, very fast. i hope i don't lose anyone. note any questions you have. and we'll hopefully have time for that at the end. my company has studied the overall economic impact of emerging infectious disease for the last half a dozen years. so part of what i want to do with you today is to leave you with some of our basic lessons regarding what to expect from pandemic influenza with respect to its overall impact. i also want to show you how we think about that and how we're tracking the current pandemic influenza and trying to assess what the relative impact is going to be. and hopefull this will be

useful for you no matter what kind of organization youe working with as you make your own plans. just a quick couple of points to start out, the way we think about emergeing disease at bio is we think about it as something we term a event, a rapid cascade of effects. i hope to show you how that actually expresses itself in the real world. but it's important to remember that we're talking just about something about the molecular level really and the virus infecting itself and then the cascade of events up to entire globally -- the entire global economy and indeed the biosphere. this is well reproduced graph.

and it shows the results of the analysis we did following the sars outeak looking backwards in time. and two things to note. one just that emerging infectious disease has been trending upward. we've been seeing more of them in recent years. there's no big news with respect to that. but we see this as a significant driving force on the overall global economy. and that's the per sct ifrom which we operate. the second thing to note about this graph is that in more recent years the scale of the ecomic impact overall has been growing. and certainly theranddaddy of our emerging infectious diseases in terms of economic impact is a

global pandemic, such as the one that we're talking about that as i'll mention a moment, there's quite a rge of uncertainty as to what that might look like. but turns our attention back in history to the largest of those -- one of the largest of those bubbles on the last graphic which was sars, i bust want it point out the -- some of the incredible learnings that we took away from that experience. it was a very, very short event. it was basically an event that stretched over a six-month period. and there were very, very few infections globally. there were only about 8,000 people who became infected. and yet it was a $50 billion pent that's the scale of the economic impact that took place with respect. of that $50 billion we broke that down and discovered to our

shock that the cost of managing the disease, that is if you look all the health care costs with respect to responding to sars and managing sars, everything that direct health related expense, that represented only 1% of that $50 billion. the remainer of the economic impact was driven by secondary effects, most importantedly by fear which we notice traveled faster than the disease itself and ha much, much, much larger impact and significance. and secondedly, the institutional responses that were taken in response to that fear. i'm going to be returning to that theme. but you want you to note here the repity with which there was an impact on the deline and tourist arrivals durg sars in

asia that fell off dramatically. that was refcted in asian market share prices during the sars epidemic. and you'll notice that, or you'll remember that one of the things that made ito frful is initially people didn't know what it was. there was no information. as the number of cases started to mount and the public health system began to respond and we learned more about the virus even though cases continued to rise, the fear level dropped. and as the fear level dropped you'll notice that markets beg to rebound. the effects on the canadian economy were equally dramatic. but canadian gpd swung by 6 percentage points across two quarters which is extraordinary significant event in terms of national economy. when it comes to estimating the

economic impact of global influenza pandemic, there really hadn't been very much done, the cdc be a study on direct cost, what to expect, and just looking at direct health costs or impacts on the health system that came up with a figure that was widely quoted for many years in excess of $100 billion. and there -- there wasn't much done building on that until h5n1 emerged. and with the emergence of h5n1, it became a much more heavily studied topic. especially after sars. the best study has been the lowely institute, but that's a typo, it should be lowey, their

work puts a bad pandemic. these are events that would be in excess of $1 trillion dollar impacts on the global economy. fortunate,oderate or mild papadammic, they put at the $300 billion dollar mark in terms of the overall impact. i'll return to that. but i share this with you because i wanted to give you a sense that there was great deal of people who had weighed in on the subct of the overall impact and that the ranging were quite severe. nobody knows exactly how significant the impact will be. now what we do have with h1n1 is now emerging data with respect to what's happening with those countries where there has been outbreak. and so far with respect to mexico and with respect to argentina, it looks like the

scale of the economic impact for those first waves is estimated to be about one to one and a half percent off of the national gdp for the 2009 calendar year. you will see those estimates if you google. i'm going to skip the detail on this. but if you -- just to make the point that some of the secondary effects, these are nonrect medical effects, we cerinly saw the fear effect happening with the h5n1 outbreak as it rolled westward out of asia and across europe. we saw everywhere it went until it hit the uk, we saw chicken sales decline, poultry sales decline, chicken consumption declined, that fed back into the u.s. and the -- in the form of

decleaning export prices for chicken parts and ultimately in the share price as we e here of some of the major poultry producers in the u.s. the point being that the economic impact of the h5n1 event and we expect also for the h1n1 event with commitically sensitive to the dree of fear that accompanies the unfolding of the event, much more on the event itself. how it is very simply we look at the unfolding of the pandemic event, it's a local and global perception and reactions. and you have to look both at the local level what's happening and at the broader global level. we see that the character of the impact is driven by these

uncertainties. the overall transmits rate of so-called r subzero, that has very wildlyor this virus depending on where you look as one would expect or as a biologist would expect. in early june there was an overall estimate of 1.4 to 1.6 inning mix. and yet in new york, it was estimated at 2.69 which is a lot higher. of course it's driven by the character of the virus itself, how it evolv. it's driven by how sick it makes people. it's by what human individuals and institutions do in response and of course the availability and effectiveness of countermeasures. all of these things are uncertain in a face of an emerging pandemic. and yet they all have a central -- centrally important impact on

how significant the impact is. so here's what we watch. and this is how we see things. we watch in the first instance the evolution of both the virus and the expression of the disease on the ground locally. what is actually happening to folks? and how is the virus and the disease changes? we watch perception of the degree of threat. that is how fearful are people? locally and at the global level and how is this changing. we watch what people do, what do institutions do? and how do they response and react? these are the things that are going to determine how significant this impact is. so looking at that local dease outbreak and the global perception and response, it n has an intermediary so to spk.

and this is the framework that we use to actually judge how things are developing. we ask, this is a scenario framework in which the outcomes -- the three prince pams outcomes one of which we have already gone beyond the false alarm. this is the real thing. and there are really two big outcomes that we think about. we think about manageable disruptions, is the event going to be manageable? there are going to beegrees of manageability, but do we have a hasn't on this thing, how are we managing it? is that going to be something that we can do, versus fear-dominated outcome. and if fear dominates then the overall economic impact of the event is going to be much, much greater. as i try to illustrate with the sars example than other than would be the case. what i'm happy to report that right now it looks like this

pandemic is eminently manageable. and i'll come back to explain why i think that. just to give you some insight, th may be hard to read. i guess you can read it. these are the things that we actually watch in each of those three categories. within evotion, its infection rate, age distribution, economic and cultural factors, those are the things that we are watches. these are the things that we are watching on the degree of threat. and if anybody has any questions on these, just ask me. this is what we watch on reaction. what we do is we have a tracking system. for all three of these categories. and every event that happens, we track on a scale of minus two to