Must Doctors Keep Secrets?

DNA has proven to have important uses in the law.  DNA is often used as evidence in family and criminal law issues.  Besides its use as evidence, however, the subject of DNA and genetic research might be leading to a host of other legal issues.  Researchers learn more and more about DNA on an almost daily basis.  While conducting research, it is possible for researchers to discover something about an individual, entirely unrelated to the research that indicates potential life-threatening conditions.  The problem is that before research studies begin, subjects are consented and often agree to anonymity and agree not to be contacted by the researcher.  But what if the information learned by the researcher could allow the subject to receive life-saving therapies or avoid life-altering decisions?  What duties and obligations might exist for the researcher when he or she learns information about a patient and what considerations should be made regarding the agreements and consents already in place.

The New York Times recently ran an article about this situation.  The article presented situations where genetic researchers studying the DNA of cancer patients learned that one subject had the AIDS-causing virus and another had a predisposition to melanoma.  Both individuals here could benefit from this knowledge and receive therapies or medications that might be life-saving.  But the patients had agreed to anonymity and agreed not to be contacted.  The article also presents two situations where researchers discovered information about subjects regarding the potential for developing breast cancer.  One researcher, whose subject intended to undergo prophylactic breast removal, learned that the subject did not carry the genetic predisposition for breast cancer.  After consulting with lawyers and the review board, the researcher shared the information with the subject.  In the other, more unfortunate situation, a researcher learned that a subject did carry a breast cancer gene.  The lawyer’s and ethics committee would not be persuaded and she was unable to tell the subject of the situation.

Is it right that researchers, who learn such valuable information, might be unable to disclose their discovery to a research participant?  According to the article, the federal government is “hurrying to develop policy options.”   It is extremely important that such policy options be created in order to protect both the research subject and the continued advancement of the medical sciences.  Individuals who are willing to participate in these studies should not be put in harm’s way just because of a preferred method for science experimentation.  Furthermore, doctors and researchers should have a clear understanding of what their rights are as well as their duties when they learn valuable information.

The article can be found online at http://www.nytimes.com/2012/08/26/health/research/with-rise-of-gene-sequencing-ethical-puzzles.html?_r=1.

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2 thoughts on “Must Doctors Keep Secrets?

  1. I think you are right that there is a serious need for guidance in this area–a problem that is rather pervasive when law and science collide. I would love to hear your thoughts on how the relevant values–such as privacy, autonomy, furthering research, and caring for individuals–should be properly balanced.

  2. Have you ever considered writing an ebook or guest authoring on other sites? I have a blog based upon on the same information you discuss and would really like to have you share some stories/information. I know my audience would appreciate your work. If you are even remotely interested, feel free to send me an email. homepage here example

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