tv Inside Story Al Jazeera March 31, 2016 11:30pm-12:01am EDT
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 yor
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 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 ru 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. it's inside story. >> ...and on the streets. >> there's been another teenager shot and killed by the police. >> a fault lines special investigation. >> there's a general distrust of this prosecutor.
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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 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 this marker 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 informatio 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 men ier'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 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 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
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searching for survivors, rescue workers dig through the rubble after a flyover collapse kills 21 in the indian city of kolkata i'm darren jordan in doha. bombers target a bus carrying turkish workers. tens of thousands march in brazil in support of embattled president. and behind the scenes at the recording