• By Dartington SRU
  • Posted on Sunday 06th June, 2010

In genetics, science is catching up with science-fiction. How should we react?

On the final day at the Society for Prevention Research conference in Denver, a panel of academics debated whether the use of genetic markers to identify children at risk was “forging new prevention science frontiers or walking on thin ice”.The panel was inspired by the 2009 book, “Preventing mental, emotional and behaviour disorders among young people: Progress and possibilities”. The specific paragraph from the book which the moderator, Elizabeth Ginesi, used to spark debate was, “The prospect of using genetic and other neurobiological markers to identify young people at risk for mental, emotional and behavioural disorders raises important concerns, such as potential stigma, bias, and denial of insurance coverage. However, knowingly withholding scientific knowledge form populations who can benefit from them also raises ethical issues”.Science is quickly catching up with the issues from this passage. For many researchers, the question isn’t so much can we test for a certain genetic predisposition but should we, and if so why? The are many behavioural risk factors that can identify a whole slew of mental, emotional and behavioural disorders, in many cases further testing for genetic predispositions could be redundant. Some researchers in the audience said that although they were testing for genetic markers, they were still not entirely sure why they were doing it, or what the findings would make them do differently. Other researchers suggested that what they find out will allow them to give more ‘bang for the buck’ in targeting interventions to those who need it most. A free will versus determinism debate ensued. Many made the point that just because we are predisposed to something does not mean that we will end up that way. Environmental factors have an enormous influence, as many panelists over the course of the week had shown, as does free will. If outcomes are as much a result of our behaviour as what we might have pre-programmed in our genes, how necessary is genetic testing?Parenting programs have been found to reduce the likelihood of children ‘predisposed’ by their genotype to take drugs when they are older. This might suggest that governments should conduct genetic testing for the predisposition and then target the programs to those that test positive. But research into parent program has found that there are easier ways target groups at risk without forcing the whole society to offer up genetic material. Many at-risk groups reveal themselves through their behavior. The great question is whether we are headed toward a future as envisioned in the movie “Gataca.” In it, an individual’s genetic code was stamped on their arm and parents routinely “juiced” the baby-making process to arrive at genetically perfect children. Do we see a future where our children will be bar-coded on their arrival in to this world, in effect showing a ‘list of genetic ingredients’ that identify their risk of various ‘conditions’, or their own peculiar ‘aptitudes’. If parents are aware of their child’s genetic make-up how will they parent their child? Will parenting change for better, for worse, or not at all? There seemed to be an understanding in the discussion group that harm can be done to a child who is labelled early on. But if it’s possible to know that the child carries risk factors, is it ethical to withhold that information?Testing for genetic markers for emotional or behavioural disorders is in its infancy so many of these questions are still hypothetical. But not for long. The authors of the book that sparked the debate recommend that the NIH should lead the efforts to set guidelines for when and how to decode an individual’s genetic makeup. At the moment researchers are learning as they go – wading through the mire of ethical issues this line of research brings on their own. The ethical issues are plentiful, answers are few. Can children consent to genetic testing? If not, should their parent consent on their behalf? What happens should something ‘untoward’ be found when testing – medical problems and paternity for instance – and should the family be informed. IHow do you prevent children being stigmatized because of a negative genetic profile? Should we fear the growth of a new kind of eugenics based not on race but on purifying the genetic code? In the discussion, a good deal of the in-house discussion was taken up discussing pros and cons, and ‘what if’ scenarios. The science is still not diagnostic yet, only suggestive. No one has yet discovered genetic markers that guarantee the development of certain behaviors or disorders. But at the same time, researchers said they were surprised by how easy it was to gain consent for genetic testing from their subjects. If the day ever comes when the science catches up with our imaginations, it seems more likely society will embrace the new information with open arms, regardless of the pitfalls.

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