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now let's see a bit of that power smile or that is our health pre-determined from birth 5 years ago young i was diagnosed with a genetic brain defect i was so down i could only see the bad side of everything and i felt really sorry for myself or like. doctors told her that her several gallon is shrinking. comics have been i came to terms with it i said ok so you're there but now i'm in charge again when the fear sets what impact can we have ourselves and how much is determined by the genes our parents passed onto us our character and constitution but also our predisposition for illnesses such as on timers heart disease and cancer. human geneticists are discovering a growing number of risk genes but how much do we want to know now that we have modern d.n.a. tests that have come to your neighbor's house to perform analyses that would not have seemed possible 5 years ago it's fun tash. this is why we are discovering such

an incredible amount right now it's considered catlin discovered a lump in her breast a subsequent analysis revealed that she has a cancer gene. i had and i had an 80 percent statistical probability of developing cancer at some point in my life and no matter how healthily mindfully and harmoniously i live my life that probability would not get any smaller. diagnosing disorders in our genes that have already developed as one thing but modern genetic tests promise far more they can calculate the risks we will face in the future even if we are healthy for the time being. what liabilities are harbored in our genes and how much do we want to know about the risks they pose. knowledge that determines how we live and how we might die. for house on the down side to genetic research actions is that they can make the patient become fixated on a future development that may never happen. in mind ultimately nobody can project

my future. yana lives on the german island of lucan her fate seems to have been sealed by her genetic makeup she has a hereditary disease that is causing part of her brain to teach generate when. you lose all of your motor skills that means the ability to walk or to talk or to pick things up live. just because i don't now prevent myself to get angry sometimes i had a fall this morning and really hurt myself that that's how things are it's just

dumb. i'm not good enough. i wrecked my glasses her friend an optician is always there to comfort her after a fall through this place. where she cannot help yana today his with her glasses which are history and. yet his condition is progressive the diagnosis was a shark and so i was terrified because initially the doctors couldn't say how rapidly it with the progress that is. they were talking about wheelchairs and it ending awfully. and that my life expectancy would no longer be the same as that of a healthy individual. so how long could she live how long will she still be able to talk and move around before she loses all of her motor faculties yana has a genetic predisposition for the condition which went unnoticed for the 1st 40

years of her life. after starting out in the restaurant trade she retrained as an image consultant and etiquette coach always demanding perfection of herself her final career move director of an apartment house while also being a single mother. she worked up to 60 hours a week continually pushing herself to the limit. just say this disease normally arises in elderly people i was too young that when you permanently exceed your mental and physical limits on eventually you'll pay the price. and. yana ignored the initial symptoms of her illness from lapses in concentration to spells of dizziness she attributed everything to her growing workload. then one night after another particularly

stressful day yanna swerved to avoid an oncoming car and drove into a tree was. on a survived the crash more or less unhurt but then a doctor discovered some odd symptoms. he asked me to walk along a straight line i tried but couldn't but. i had to stand on one leg he stood right next to me because he guessed what might happen and when i tried to stand on one leg i fell over. what doctors did not guess at that time because of no family history of her condition was that it was inherent in her genes yet i went through the full gamut. of consultations and examinations until finally a costly genetic test performed as part of a study provided answers. the i have a gene mutation that was previously unknown my age and my parents each have both of the sick and the healthy chromosome clues on the back and both my father and my

mother passed the thick one on to me so from the. how many unknown risks do we carry in our genes and how can we identify them our genome is comprised of 3200000000 blocks of d.n.a. how can we picture that number 3200000000 grains of sand would fill 20 small buckets but only one percent of our d.n.a. just 2 handfuls of sand varies from one individual to the next determining our specific size and shape our character and our propensity for illness and it's this one percent that human geneticists concentrate on it is hidden away spread across the entire genome the one percent is also the key to potential hereditary disorders . scientists have now identified over 5000 risk genes and are constantly finding new genes that crop up together with certain diseases coming we are currently

making a lot of discoveries in human genetics there have been dramatic advances in molecular genetic analysis in recent years and thanks to these new technical possibilities we can now conduct analyses that would have been unimaginable 5 years ago. the mapping of a complete human genetic code less than 2 decades ago cost billions of euros today the price for the same procedure is just a few $1000.00 and it will continue to fall as a result analyses are being performed more frequently in turn leading to the discovery of more suspicious gene mutations and. when we find something we can check databases for other patients with changes in the same gene. and we might find 2 or 3 others somewhere in the world who have that same disease. we can then be identify this gene as a diseased gene for a particular condition unconquered so that's pretty exciting.

just as every patient is different so too is every gene mutation not all identified me taishan affect health and development a mutation may be harmless researchers need a large number of patients with the same mutations and same symptoms before they can identify a suspicious pattern today there are databases containing millions of genetic profiles of sick and healthy patients compiled by universities human genetics institutes and private sector companies. the databases are an invaluable treasure trove for professor he's part of a younger generation of human geneticists whose work revolves around big data and his approach has been successful he and his team recently identified new links between 33 genes and epilepsy. but how

dependable are diagnoses when a subject is healthy like professor. i don't intend to sequence my entire genome because i know how often we find ambiguous results. of us in the case of certain changes we come across we cannot say with absolute certainty whether or not there is cause for concern. and if i don't have a specific query on a specific illness. and i then find ambiguous results in some genes that might lead to something then i'm just creating insecurity. every individual has genetic variants that can make them ill and in most cases they only find out once they do become ill cats one was 35 when she felt a lump in her breast tests revealed she had cancer.

i don't often hear phrases like a high risk patient and its growth is aggressive and i've had a pretty healthy lifestyle i didn't smoke and still don't these are all factors that indicate that the illness could be genetic. without this test i very probably would have developed a new tumor and might not be here today. as it does and sometimes when i'm having a bad day i remind myself i'm still alive thanks to modern medicine. patton grew up in life sick after graduating from college she spent some time in britain she was living in berlin when she became seriously ill she had the gene test done during her chemotherapy catlin has the b.r.c.a. one gene mutation the faulty gene publicised by angelenos or the like the actress

catherine had a double mastectomy to remove both breasts including the unaffected one to minimize her risk of developing cancer but this mutation also increases the likelihood of developing ovarian cancer. and i'd still say your breasts you can cut off but it's a much bigger deal if it's in your abdomen. at one point a doctor said that's not something you can just have checked for. if it's detected joining an examination then it's probably too late which is why a lot of doctors told me the ovaries have to go and i thought no i'm not ready to do that yet there it would be another part of me i'd have to let go of i am the human being behind these statistics i'm not just a name or a subject in a study i'm a human being with feelings dreams and expectations they mention again and once you're in with a. cat one wants to keep her ovaries for as long as possible she's afraid of surgery and of going through mental pause as

a young woman. because hormone therapy is taboo for b.r.c.a. one carriers she wouldn't be able to treat accompanying symptoms intense hot flashes and total hormonal imbalance caton already had such symptoms during chemotherapy she got through it with her roommate support as he was such a strain to eat anything in the morning during chemo. when it got really bad i'd have a little pillow here. that might sound cute but when i thought something i'd have to put my head down and take a time out right here at the table i just didn't have any energy in the house. figuring out the right thing to do is a precarious balancing act recently cotton had her fallopian tubes removed in the hope of reducing the risk of ovarian cancer. if it's genetic it's never gone for good and you always have another examination coming up or another big decision in with us. thanks to genetic diagnosis people have access to an unprecedented amount

of information about their state of health but how reliable is this preview of our own future and how does it affect us one of the specialists in this field is on the teaching staff here at the university of applied sciences in emden in north west germany cilia some ascii has conducted research on the dilemma facing patients when they find out about what their genes might have in store for them. the primary focus for me was on the new way that individuals are expected to make decisions that friends are a bullet strictly speaking there is no right decision to make when all you're doing is choosing between different risks. it's basically a new form of gambling basing your decision on a lottery. the sociologist published her observations on genetic counseling and its social consequences in a book called the decision trap what impact does the information have on patients and can it be too much so america has also studied human genetics and analyze

d.n.a. in the lab she says genes should not be equated with destiny. given we know when we're talking about risk genes a specific change at the d.n.a. level can be a trigger but not necessarily. it might lead to a change whether visible or clinical i think can but it also might not see far on a clinician or any orders kind of a person may have a severe mutation the and still not get it at 230 on one platform he conquered only a fraction of mutations are certain to lead to disease in most cases it's a question not of certainty but of probability 20 percent or 60 or 80 even with identical twins carrying the same mutation one might remain healthy geneticists still don't know why. for professor lancair there is little ambiguity in genes which is why he calls them disease genes and not risk genes for him it's just

a question of time before a person with a serious genetic defect gets sick or anything else is a rare exception melanie's survived an aggressive form of intestinal cancer she underwent chemotherapy radiation and extensive surgery which included the creation of an artificial rectum. you've been sent to us from nuremberg due to a suspected hereditary form of intestinal cancer. since. my father was born in 1957 he also had bowel cancer 10 years ago and cancer in his lymph nodes on the boys and us. how old was he when he was diagnosed with color rectal cancer i must tell you must have been around 50. so it all hit him just before the age when you get preventive treatment when the lymphoma was immediately apparent and the intestinal cancer only after i urged him to have a colonoscopy due to the likelihood of a hereditary risk. and then they said it was too late they did remove something it

turned out to be a. course with my parental grandmother is now dead she apparently carried on smoking right up until the end and never had cancer. but her mother probably did. well. do you know what kind is that as far as i could tell it was intestinal but i can't say for sure but there's a significant history of cancer on my father's side. all correct all cancer is one of the most common forms of cancer genetic counseling also looks at the patient's family history if relatives have been ill it makes sense to perform a genetic analysis. that means if there have been several cases in that family or individuals who became ill at a young age then we have to ask whether it's perhaps a case of regular old age related cancer or indeed you to read it or

a factors. in your case you were 35 when you became ill. and your father developed cancer when he was around 50. percent of cases occurred well before the average age for the onset of age related to colorectal cancer. are smokers are sort. of for i have 2 children which is why i'm here i want to know whether they might have a genetic predisposition and at what point it would make sense to have them checked . if that doesn't happen until they're 35 like i was then it will be too late. by then the horse is already bolted i'd like to ask what age would be advisable 15202521 i just want to minimize the risk for

my family. if we can are so tame this patients predisposition with 100 percent certainty from a genetic test then it's very likely that she will have inherited it from her father. and as i mentioned earlier there will be a 50 percent chance in each case of her having passed it on to her daughters but it could be that both have inherited it or neither have or one has and the other hasn't. capital melanie had to formally sign an agreement for the genetic test as is required under german law her daughters cannot have the analysis done until they are 18 since hereditary bal cancer does not develop before adult hood tests on children are only permitted if they already have a disease of unknown cause. banking interests i think

genetic testing will become increasingly standard practice and become increasingly comprehensive is also relatively sure that at some point it will be standard practice when performing a genetic analysis during childhood to examine the entire genome rather than just look for one or 2 specific genes or conduct a test pattern is because it was clear that it might eventually become routine for newborns to undergo a complete genome analysis just like with newborn screening and for that data to be stored on a smart card after to program. eventually perhaps but not yet in germany people have a right not to know the results of genetic tests but can that information be concealed when a hereditary condition has been diagnosed in an individual's family and what impact does knowledge of the risk of future illness have. with her rare condition young still has to go about her daily life the 1st thing she thought about when she was diagnosed was rich my hands on my son was 12 and i started to panic i was terrified

and my biggest fear was that my son might get it because genetic means hereditary. but human geneticists have assured her that the probability of her son developing the same disease is very low yanna herself inherited the genetic defect from both her father and her mother and it's only in combination that the mutation leads to illness hers is a rare case her son is protected by his 2nd most likely healthy paternal chromosome . then there have been of how but if he gets married and at some point plans to have children then they'll have to take my results to a human genetics institute and get themselves tested. this enough and this is the way the world is headed anyway that would eventually we'll only have genetically flawless people being born. month interim but he should get himself tested and.

at the us. for now it's a subject they don't talk about at home the other wants to spare her son now 17 unnecessary worry about risks and probabilities he. told her. i am watching him. and you are what you think the man's on it right now forced this information on my son that he might get preoccupied with it and then there's a high probability of him getting some pseudo disorder so i'm not going there. scientific studies have shown that merely worrying about a disease can make you ill like the placebo effect except it works in the other direction if we expect to get sick we can develop symptoms a medical prognosis can change how we see ourselves and others. and i mention test i mean you just a person you always glean at least potential information on their family members to your decisions are never taken in isolation they always include relatives and especially when there is a genetic factor there will always be other people potentially affected. the

diagnosis of a genetic illness is a shock as much to an individual as to their family members. catlin has come to life to visit friends and her parents when she found out that her breast cancer was genetic it unleashed a series of questions who did the mutation come from until then there'd been no known history of the disease in her family. her mother then also had herself tested to find out whether she could likewise develop cancer. while there it was a very staid and boring appointment just terrible. and i still remember how afterwards we went and bought some sunflowers of. i might have had something to and i wanted to know who was responsible for the trans illness whether it was me or my husband of course you can't blame anybody they can't do anything

anyway and i had the test done and was then a little bit reassured. but for country i'm so dreadfully sorry for her. but there's nothing one can do it and i'm there and anything factually days you were cranky and really angry. i was so cranky it just hurts so much to know that we passed it on to you culture and over. time i could have dealt with a lot of other things but why this is a big thing. and that is going to stream lee rare cases the mutation is not hereditary but arises spontaneously normally if the mother does not have the breast cancer gene that it must come from the father. has refused to undergo a genetic test. it's kind of like can understand that because then you have it in writing and there's no denying it if my father says he's now so old anyway and doesn't want that then i have to accept it. were cancer genes are involved patients

in germany are provided with screenings and preventive surgery most hereditary diseases however are incurable now scientists in gene laboratories are using d. . in a scissors to directly intervene in human cells with the hope of repairing them wrigley field. we get a lot of e-mails and letters from people with genetic diseases asking us to help them. out of this in but we can't yet because the technologies we are developing still have to be tested in clinical trials and. we need to know this is i'm going to survive. we're still far from finding a cure for all hereditary diseases but what professor behold said his team can do is astonishing they took cells infected with hiv and completely removed the genome that had introduced the virus so far that work is limited to animal experiments but this progress is a sensation for the scientific community d.n.a. scissors have prompted the kind of excitement that surgery once did in the 19th

century. to think it has to. turn on surgery as it's often called could assume a similar important. i'm going to predict that 50 years from now we'll probably see as many people undergoing genome surgery as the conventional kind. professor who called his team aims to find a cure for hemophilia using cells donated by a boy who has the hereditary bleeding disorder the scientists are well acquainted with the mutation in question it's caused by a piece of d.n.a. being the wrong way around and as a result impossible for cells to read this prevents them from forming a particular clotting factor that's needed for a womb to heal. the. longest for any kind of life now this is this. is created as an enzyme that can correct this by turning the piece of d.n.a. back in the right direction and. we hope that we will be able to implement this in

actual treatment so this will take time. as we know from any other drugs that already exist i mean you have to proceed very carefully with a limited number of patients. and see whether there are undesirable side effects for all that we're doing this is the very 1st time that these new technologies are being tried out so we have to be careful. researchers are altering cells in the lab the next step will be animal testing only later will they move on to tests on humans if successful. would no longer need medication even if they would still pass on the genetic defect researchers would only be able to completely cure the disease if they could alter the germ cells from which humans develop in germany this is prohibited by the embryo protection act. human kind or be trying to change future generations and that raises problems there always be a danger like with nuclear energy or the atom. when you then have those kinds of

weapons or some other new technology you can use them to do good of course to do something not so great. intervening in human genetic lineage is for now considered to risk. any changes to the genetic material in a fertilized egg cell would be irreversible this edits would not only affect the patient in question but also all of their descendants and that on a wider scale would mean changing humankind's genealogy with unforeseeable consequences and dangers how those alter genes would interact with other sections of the genome is still completely unknown territory for researchers. does not believe her genetic defect will be cured. she has her own answer to the illness just living with it. i don't see it as my enemy anymore. i've

come to terms with it i do my occupational therapy and my yoga i enjoy my life and i think that's the best form of therapy. no wobbles i'm so proud. he's. my speech has really improved. my my study or on my feet with that is i'm now able to walk along a straight line. i can now do this test to get them out of my fingers to go all over the place agreed to everywhere but not on my nose if you learn to ride on your mind you're all just are thrilled. occupational therapy physical therapy and today speech therapy every week yana undergoes a mammoth program to maintain her motor faculties for as long as possible as a void and i have trouble finding words like yesterday so let's roll the dice.

this is an exercise to counter anomic aphasia a difficulty retrieving words yanna has to create a word from the letters the dice throw up a complex task. but once she masters. hand. it's not like. the neurologists talk about statistics. and i then say that means nothing you have no idea how the illness is progressing. you have all you have is a couple of 100 people across the entire country and then you produce your statistics from that. that no way i don't buy it. can we shift the statistics in our favor cotton also undergoes

a tough workout regimen at least 3 times a week designed to prevent a relapse she's now part of a study that aims to prove that exercise and a mediterranean diet can help the risk of recurring tumors. it isn't he that's the hope if you eat healthy food and exercise regularly that practically has the same benefits as the chemotherapy i did prevention so you don't suffer a relapse that means reducing stress doing exercise and eating healthily pounds for being. making my own contribution to ensuring that no new mutation develops that's the hope and i do notice i feel better. researchers still have no reliable data on whether a mediterranean diet can also protect people with cancer genes from getting tumors 5 years after her cancer diagnosis patton has not had

a relapse. if you have family in the i have an ultrasound scan done twice a year they just check if everything is ok and once a year i have an m.r.i. because there's still some residual gland tissue and there's still the danger that something might develop on their appointments that are always emotionally charged i didn't. catch one tries to ensure her daily diet includes spins of all of oil fruit vegetables and plenty of fish as is common in mediterranean countries. want to be uplifted by. a look at. what role to our genes play or lifestyle. stefan is an architect and has a keen interest in understanding his body with that in mind he recently joined a long term study called narco. now called.

easy can indeed do this guy nick is an illiterate. fact i already knew about the study from a friend of mine because he'd been selected himself he raved about it. so when i got the letter saying i'd been selected i knew i had to do it. he was one of 200000 people selected at random. stephon has a scan done every 4 and a half years and gives the study organizers personal data from his health insurance company as well as regular updates on his eating habits call on a voluntary basis. that's this test your sense of smell. shoeleather disease and pains for every line.

is concerned to say it's nice to see the individual treatment i get and how they give me a comprehensive check from my gut feeling i feel pretty healthy but of course there's always the possibility that the results might prove me wrong. stefan is currently in the best of health but the survey will continue for at least 30 years the genetic material from his blood now in deep freeze storage will be available for future research. by me. that our gut says you will see they haven't followed his or studiously haven't few to mention concomitant infrequently of the tests trips or pets in fact

done canoes eat food if you are absolutely. because if you're bored on frog modelling then mark on include your nose a bit as fuel for us to use these a quarter. the survey is the biggest population based study to date in germany critical voices in the scientific community are a small minority for professor cilia some ascii studies like this could revolutionize the medical world as we know it. so. you have to think really hard about what it means when you tell me i could get cancer in 5 years time or cardiovascular disease in 10 years what i currently. have that's just a could a prediction based on statistics on but i'm identified as a risk carrier and i'm supposed to behave accordingly. people generally get treated when they fall ill in the future scientists will be able to identify a growing number of risk factors even in healthy individuals leading to everyone

becoming prospective patients. in tears and a little potentially we all carry risk factors. there's also a strategic aspect to this title so it's possible to earn money by defining people are sick and in need of treatment counted if union or 150 to differ. if the starting point for a medical need for treatment is no longer the patient feeling ill but risks that can be ascribed to people which will increase the more studies you do. then soon everyone will be a patient. but. are we in danger of creating a health care system that has us under permanent surveillance and on constant alert based on probabilities and not certainties. as a bowel cancer patient it's important for melanie to monitor her health a few days ago the screening showed she had no metastases she's now waiting for

another test result. behavior people would be great not to have this genetic predisposition meaning i simply got unlucky and would not be passing it on to my children. that is the risk there too is $5050.00 but i got the wrong 50 so i do have mixed feelings. this in. response to. it's harmless and melanie is about to find out whether she has the predisposition for bell cancer. or if the cancer developed by chance. as much progression in let's start with the results. we carried out an examination into the frequency of colon cancer genes and did not detect any mutations that would identify you as a carrier of

a hereditary to my disease. that's great because it's you know. there's so we can now cross off a whole range of diseases from the list. you get this also means that we don't as such have any evidence that you have a genetic mutation that you could pass on to any offspring. good. you have any questions not for now i'm just relieved it's good if it's such a relief that. we can some might have been caused by bad luck or my lifestyle or something else but it's not genetic not a known genetic problem at least. and a problem that isn't there can't be passed down the so that's good news melanie has been given the all clear for the time being we can say now as that with a technology on the knowledge we currently have at our disposal of we have not

found any evidence of anything unusual but in a few years time it maybe a quite different scenario thanks to further insights on advances in genetic diagnostics technology rick so why don't trigger a problem she when geneticists concurrently test for round 100 individual genetic mutations that lead to cancer what are known as monell genic diseases most genetic disorders however involve a number of genes these polly genic diseases are far more complex and difficult to identify for these to be discovered there would 1st have to be larger scale studies with more volunteers be able to detect and show changes in a range of different people where you wouldn't expect them. that sense there is no such thing as a genetically healthy individual. or you can do is break it down into individual genetic predispositions and say everything is normal with regard to

a particular predisposition if there is a normal healthy individuals carry mutations that could lead to problems in their progeny. katherine is glad that her cancer gene was identified without personalized therapy she might not have survived but for her both the treatment and gene diagnosis mean she can't have children. having this genetic predisposition i wouldn't have wanted to risk passing it on but rather be a one way street and say stop this is far enough i'd rather be the art who has fun with other people's children than bringing my own kids into the world in their new bed today. katlin has learned to live with her genetic defect and the permanently higher risk of developing cancer again. there are moments where i think why did i have to have double bad luck. getting cancer in itself was bad enough but then you into the water which is no help it

only makes me angry so i just accepted a move on the tears. and i planned my life one year to time as for later let's see what happens i'm going to take things as they come and. yana is not listening to her fate either despite her serious genetic defect. and of course i'm scared and but there are different types of fear. a fear that eats away at your mind and soul and a fear that protects you from making unwise decisions like. i have that natural

fear not the one that torments you. when you look at the camera going on of course now let's see a bit of that power smile when it comes down to has a lot of plans today she's having professional photos done for professional reasons she gets a pension but still works as an etiquette coach to the amazement of her doctors. i've just decided that we're going to do this again every couple of years and it's for me but because you never know. when this is will i end up in a wheelchair. the neurologist say yes i say no. because thank him as i don't want a self-fulfilling prophecy if i'm constantly thinking about possibly ending up in a wheelchair or dying and then it will happen. so instead i imagine being 70 and still walking around elegantly with my cane and covered in bling and everything's

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