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February 8, 2013 | Posted By John Kaplan, PhD

Anonymity has always been an important component of protecting the privacy of human participants in research and other activities including biobanking. In his January 21, 2013 post to this blog, my colleague Zubin Master asked the question “could it be possible to identify people who have participated in biobanking projects?”  We did not have to wait very long for an answer. It turns out that the January 18, 2013 issue of Science was already on my desk.  In a study in that issue, Melissa Gyrmek and colleagues in a group led by Yaniv Ehlich describe how they used a published genetic sequence as well as accompanying metadata and freely accessible genealogy websites to identify the sequence’s owner. This was big enough news to merit a news article and a policy forum examining the ethical implications all in one issue.

A previous study (Science, September 5, 2008 p. 1278) had allowed donor identification from a blood sample through analysis of single nucleotide polymorphisms by sequencing a blood sample. This new study is the first to use simply a published sequence.

These finding are straight forward unambiguous statements that any repository of blood or tissue or any published genomic sequence cannot be deidentified and anonymity cannot be assured. The implications of this are manifold and important. It means the privacy protections traditionally offered to research participants no longer offer complete protection. As we learn to identify the relationship between genotype and phenotype, that is the relationship between sequence and biological traits, the identity of the donor as well as genetically determined predispositions to disease are all there together. This can lead to stigmatization as well as have very direct economic repercussions. For example, white federal law prohibits denial of medical insurance based on genetic predisposition there is no such prohibition against denial of life insurance and long-term care insurance.

The collective implications of these observations are that we must either change our expectations of privacy or develop new ways to insure such protections. This is something for all of us to think about.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

0 comments | Topics: Biobanking, Genetics, Research Ethics


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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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