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What do you think?
Would you want to undergo genetic testing to learn if you were predisposed to a disease for which there is no treatment or cure? |
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Philip Reilly, M.D., J.D.
President and CEO, The Shriver Center
Editor, The Gene Letter |
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Yes. I believe that knowledge empowers people. Although one may be at risk for an incurable disease about which there is little one can do to avert onset, the knowledge of this risk can help one make many other decisions about one's life. It can help one to prioritize how to live what might be a shorter life span, it can affect one's thoughts about the timing of major life events like marriage and having children. It can shape decisions about jobs.
Further, I firmly believe that there is always hope that a bleak prospect can improve. Knowledge about risk may drive people to stay more in touch with scientific and medical progress. Many diseases such as tuberculosis and syphilis that once killed millions are easily cured today.
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Leonard M. Fleck, Ph.D.
Professor of Philosophy and Medical Ethics
Center for Ethics and Humanities in the Life Sciences,
Michigan State University |
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It is not possible to give a simple "yes" or "no" answer. From a psychological perspective I think I would want to know, if only because it might be the case that my life goals might be greatly altered by my knowing. From a moral perspective, if I were thinking of having children (or if I already had children who were considering marriage and having children of their own), I think I would be morally obligated to know since it might be the case that, if I were positive for that gene, I ought to consider alternative reproductive options so as to remove the likelihood of my transmitting that gene to my children or grandchildren.
A lot depends on which gene and which genetic disorder we have in mind. Huntington's is one sort of example since penetrance is 100% -- if I have the gene I will be afflicted with the disorder. But the APOE 4/4 gene associated with Alzheimer's or BRCA1 associated with breast cancer have probabilities attached to them that are related to some number of non-genetic factors that are not at all understood at this time. I would probably not be under any moral obligation to alter my reproductive decisions in these latter cases, but I would be in the case of Huntington's. |
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Daniel Rader, M.D.
Associate Director, Clinical Research Center
University of Pennsylvania Medical Center |
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My answer is a qualified yes. I simply would want to know for life planning purposes and also because of the psychological benefit of knowing either way. I would also be more likely to pay attention to the newest therapeutic developments for the disease, even if preliminary.
The qualification relates to insurability: I would only have the test if I could be assured that it would not appear anywhere on a medical record or be accessed by any insurance companies or other persons. |
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