country's poor, this trade in human beings looks set to continue. "inside story"."ins . it was announced with grapt fan fair earlier this year that researchers had identified one of the markers that signalled a pre-disposition to series mental illness, schizophrenia. if you know you've got that marker, there's not much you can do about it, but it holds promise for future therapies. if you do know, do you want anyone else to know? are there people or institutions you do not want with that

information? in the 21st century can you ensure that information is secure, your genes, your privacy? it's the "inside story". i'm ray suarez and this is "inside story". earlier this year research funded by the national institutes of health, they understand the association of genes and the mechanism that sets off schizophrenia in some suffers of that disorder. in all the known genetic risks for the disorder, it is one particular gene known as c4 that offers the clearest indication of heightened pre-disposition for developing what is often a devastating condition. we now know a lot more about

hert r herity-- inheritablity. on one level it's great news because understanding what's going on in the brain, the pruning of the structures that has been growing and developing since the womb offers the possibility of future countermeasures, but when i heard the story i wondered as useful as it is to know about what your genes say about heightened risk, about pre-disposition to certain diseases, would i as an individual be able to protect that information, allow it into some hands and not others? that's our focus. your genes, your privacy, this time on the program. joining me for that conversation, rebecca brendell from harvard university and assistant professor of psychiatry at the harvard school and director of the new york

institu institute. professor jones, this strikes me, a layman, as a pretty big deal >> it is. for a long time scientists have been trying to understand the biological under pinnings of schizophrenia. there have been a lot of clues in the past, but when they discovered the role of the c4 it caused a ripple throughout the community is the relationship so tight that you can tell the genetic make up of a schizophrenic from looking at the gene or a predict that someone is going to develop it by seeing it in advance? >> well, it's a correlation. what this means is that any individual that has these particular mutations, that they are pre-deposed for the--

predisposed to the decease so it's not-- disease, so it's not a correlation this is pretty new information. will more research be required to know just how intimate that pre-disposition is? >> yes. absolutely. one of the interesting things about the disease, there is an environmental component. there are several instances where you will have identical twins and maybe one twin many have the disorder and the identical will not show symptoms of the disorder. we know that there is a strong inheritiable component but others that we don't understand it sound like we don't know quite what to do yet or whether we would tell an individual who has this marker how to live or what not to do.

>> i think the biggest challenge is that for the scientists and the doctors. i think we know what to do with the information. it is for you, a journalist and the media, how do you explain it to the public without overstate the importance and raising expectations prematurely. this find itting had a huge impact-- finding, had a huge impact. but it is not singular. it is one more piece of a puzzle that is being assembled for many years. it just happens it's a very big and significant piece of the puzzle. the reason why it's big and significant is because it was the finding of a very strong signal for a particular set of genes that link up with probably one of the most important theories of the illness. many genes have been associated

with the diagnosis of an illness, schizophrenia, manic depression, depression, but in this case the particular gene, c4, produce is an effect on a process and many years ago they had a theory proposed that one of the phenomenon that triggers schizophrenia is during adolescence when there is a process of elimination and that in people who become schizophrenic this process is disregulated and abnormal and over-active. the findings with the gene showed that, there was an over expression, a gain of function in these genes now that we know this but we don't know what to tell an

individual, does it create some ethical challenges? if we screen for this, do we tell every individual who we find it in, do we find evidence of mental illness, do we run anassay to see if the markers are there? >> you've identified some of the very many challenges there are when we think about how we translate our learning about genetics into clinical settings, in into research settings and to the individual patient from the bench to the clinic and to the significance for their lives. as you've heard, much of this process of the pruning happens in late adolescence and so knowledge about this gene for the individual, at a vulnerable and critical point as they're entering into adulthood and

thinking about decisions for the future, having this knowledge could be helpful, for example, in being aware of symptoms to come, but it could also cause them to be discriminated against in situations where an employer might not want to take a risk on training an individual who might be more likely than someone in the general population to develop what could be a devastating and severe mental illness that's where i want to pick it up when we come back because it's just that knowledge of others beyond the individual, beyond the family, that makes this really complicated. your genes and your privacy. is our ability to understand you down to the molecular level outrunning our ability to protect you from prying eyes. stay with us. it's inside story.

jooens genes jooen gene

>> the only live national news show at 11:00 eastern. >> we start with breaking news. >> let's take a closer look. you're watching inside story. we're talking about new breakthroughs in our understanding of what your genes tell us about your potential vulnerablitys. more knowledge is more known about are you at the most intimate level. my guests are still with me. you were telling us before the break, you used the example of an employer. i would want to know if someone

was prone to schizophrenia because to me that's more serious than being prone to clumsiness or forgetfulness. yet at the same time there are legal limits on what i can know about what's lurking in someone's most detailed biological make up. >> we do have some protections for genetic information for individuals, in particular, prohibiting discrimination in the context of securing health insurance benefits. that's a 2008 law in this country, and in general employers would not be able to gain information about one's genetic pre-disposition any more than any other medical condition except if it were affecting their ability to do the

functions of their job. it raises even larger questions when it comes to genetic information because certain kinds of information can be kept private, but genetic information about an individual is unique to that individual and so the kinds of protections of confidentiality and anonymity that we've used in the past to protect medical information are not really available to the same extent for one's genetic fingerprint > health insurance was mentioned. if i was a life insurer, and when i've bought it in the past i've got a physical, they've taken my vitals, given me an ekg and taken blood, can they do a genetic test? >> i think what has happened with the advent of molecular

genetics and the sequencing of the human genome sequencing issue, we have pulled the curtain back from the again etic underpinnings of each individual's uniqueness-- the genetic, how do we use that. you're talking about interviews and how the doctors could communicate. it's beyond that. we are engaged in the social experiment where many companies can get the gene sequenced albeit not very precisely, but you can have it done more precisely through your doctor and through a very sophisticated laboratory. the question is what do you do with that information. if a very sophisticated consumer goes to their doctor and said, "i know you can do whole genome

sequencing, and i'm willing to pay for that", that can be done, but how do you interpret it? it creates problems for the individual because if somebody tells you what are the probabilities given your genone for certain disorders, what are you going to do with that information? it can either drive you crazy worrying about it or help to prompt you to adapt your lifestyle in a way that avoids you developing a very serious illness etna probably has a different level of liability and legal responsibility from 23 and me. you spit into a test tube, you put it in a mailer and it comes back saying what they know. can we build in protections that give people a way of being in

sync with the law? >> i think we need to. this is a question that has to be addressed. it was pointed out that the geno law that was passed in 2008 provides limited protection for individuals who want to get health insurance or get employment, but what it doesn't protect is individuals that want to get life insurance or disability insurance or any other sorts of protection. so in many ways we've opened up a pandora's box by this there's a race in security. we're having in this conversation in the same what week that immediatestar has been hacked-- medstar has been hacked, and now hospitals are trying to ensure clients that, in fact, there are steps being taken to ensure their information. who knows, can i be sure?

you were about to jump in? >> yeah. i think you have to make a distinction as to what kind of information this is and how reliable is it. for example, a lot of people believe in astrology and so they read their horoscopes every day and they may or may not adjust what they do based on that information. a lot of people believe in nutritional things and sensitivities, but this stuff does not have scientific validity. 23 and me and the recreational genetics is all interesting as a conversation piece and provides some type of information, but it isn't validated in the same way that if you have a blood test to measure your glucose or your haemoglobin. what is happening now, with gene sequencing and knowing what the

consequences of the different forms of genes are, we're developing a profile that will become hardened into evidentiary fact on what is the risk for illness, but it is still evolving to that point and it hasn't reached that point. when you say to an insurance company is going to do an actuarial table based on you having a specific genotype, they will be able to do that in future but it is still evolving. i think a real challenge is how the media communicates this and the scientist community as well and it is exciting, but it is hard to say how it will apply we will take this break and we will get an insight on what conclusions can individuals make about themselves and their own few times. your genes, your privacy. stay with us, it's "inside story"..

welcome back to inside story. we're talking about the advances in science that hold the promise of taking the mystery out of diseases you or family members may develop. the promise and the peril of knowing you may have a higher than average chance of suffering from a thus far incurable malady or dying an early death. there are legal, ethical, digital privacy implications involved in this new era of medicine. my guests are still with me. counselling for couples, we

talked just briefly earlier about what we're learning about the inheritability of various neurological disorders. if we find out more about this c4 and its relationship to schizophrenia, would woe go as far eventually as to advise certain couples not to have children? >> we're really a long way off from being able to get to that question because the critical piece to understand from what we know now about c4 is that there is an association between c4 and developing schizophrenia. however, we also know as professor jones told us earlier, that even for identical twins with the same genetic information, in those pairs of twins, really, roughly, only about half of the second twin

will develop schizophrenia if the first twin does. so we don't want to go too far without the knowledge of what the actual risk is if i know i have thisarker am i ethically obliged to tell somebody else, somebody i may be contemplating a long-term relationship with? even if we know that the relationship is not one-to-one and it is not such an intimate relationship, that it is going to mean anything about myself or future children? >> it could. i mean, the level of evidence is stronger for some disorders than for other. if you have the brakka 2 gene for breast cancer, many women will choose to have masectomies. if you have an a4 gene, you're

at risk for alzheimer's. there are other diseases. in terms of disclosure to potential potential spouses, it depends on the honesty and the nature of the relationship, but if i was that person's intended to be, i would want to know that. you couldn't have been talking about things like this until just in the past couple of years presumably, in coming years there will be even more things that we can have that conversation about. >> absolutely. so one of the goals in genomics is to get the $100 genone where we can get this deep level sequencing on all people for $100. once that happens, then you will see the ball game will be completely different. everyone will have direct access to very high quality genomic

information it's not necessarily information that's actionable. if i find out as my brother did 23 and me and found a family pre-disposition to menier's syndrome, which leads to deafness down the road, it's not something that you can do anything about. >> yes. we just haven't come to the point where we know what to do with all this information. you're right, it is only going to become more and more complicated as the data becomes ubiquitous. >> we can make interventions, and knowing the gene, it points the pharmaceutical and the bio-tech industries in the direction of treatment because they then try to develop a drug that acts on the gene target.

>> i agree with that, but on the individual level, how do you make a decision to, perhaps, maybe lifestyle changes, but these things are not that straightforward all the time how do we keep the science from getting way out ahead of the legal world, out of the ethical considerations? how do we keep our big institutions in sync so we're having a humane conversation with each other? >> that's a great question. that's really at the center of this because if we're too restrictive and we say, look, our ethics are not ready to address our scientific advances, and people are then discouraged and don't go and volunteer for research or engage in genetic testing, it stymies our ability

to reach efforts to than end these. we could be in trouble about implications who have too little knowledge of a single fact. we really have to think carefully and thoughtfully about the principles we know to be true for engaging in medical research and in clinical treatment and in respecting persons, thinking about their well-being and also thinking about how is the society, we choose to share and bear the consequences are we looking at a long timeline before some therapeutics come out of this new knowledge about c4 and schizophrenia? >> i think we're looking eight decade timeline-- a decade time lionel for a therapeutic

treatment for a c4-based targeted treatment, but in terms of genetics for treatment, i think it's happening already. it's happening in cancer to a large degree, to some degree in cardiovascular and infectious deceases and neuro psychiatric disorders too. what is being appreciated is that many of the treatments we use now are the equivalent of treating fever with aspirin. it makes your temperature go down but it doesn't necessarily alleviate the underlying cause. by getting at the genes we will get to the underlying cause and so it is like peeling an onion to look at the core to see if it's a yell d ons w or white onion. it is happening now and it will transform medicine i thank you my guests.

that's the inside story. join us tomorrow when we look at the central american nation of honduras and the state department under then secretary of state hillary clinton. the department was accused of pulling the strings. what does it tell us about the presidential candidate's world view and diplomatic approach. i'm ray suarez and this is "inside story". thanks for watching. goodnight. is ng. goodnight. is is is >> al jazeera america - proud to tell your stories... of desperate journeys. a global crisis. >> it was a disaster in the making. the camp is over-congested. >> there is no humanity in this world. >> it's not fair, i'm very sad,

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