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Debate: When to release genetic data?

Image: George Gastin via WikimediaAs genomic science evolves in an age of increasingly rapid and cheap gene sequencing, more large-scale genetic studies are enlisting thousands of human subjects, who are lending their tissue samples for researchers to probe for the signals of cancer, Alzheimer's or other complex conditions. But as science constructs a clearer picture of how genes affect human health, and study participants become more curious about what their genomes can tell them, an important

By | August 3, 2010

Image: George Gastin via Wikimedia
As genomic science evolves in an age of increasingly rapid and cheap gene sequencing, more large-scale genetic studies are enlisting thousands of human subjects, who are lending their tissue samples for researchers to probe for the signals of cancer, Alzheimer's or other complex conditions. But as science constructs a clearer picture of how genes affect human health, and study participants become more curious about what their genomes can tell them, an important ethical question arises: When are researchers obligated to return genetic results to participants in genome studies? Last month, a pair of commentaries explored this question in __Science Translational Medicine__. The linkurl:first,;http://stm.sciencemag.org/content/2/37/37cm19.abstract?sid=6cb9dce8-c5b7-4e51-b696-98a857ba6d67 written by Harvard University colleagues linkurl:Isaac Kohane,;http://www.childrenshospital.org/cfapps/research/data_admin/Site113/mainpageS113P0.html an informatician and pediatrician, and bioethicist linkurl:Patrick Taylor,;http://connects.catalyst.harvard.edu/PROFILES/ProfileDetails.aspx?Person=PLT3 stressed the importance of gauging each study participant's preferences and the communicability of the complex information in determining whether or not to release genomic information. The second linkurl:commentary,;http://stm.sciencemag.org/content/2/38/38cm20.abstract?sid=9c9245d7-1cf7-4446-84a0-1b436ab22fec authored by bioethicist linkurl:Laura Beskow;http://www.genome.duke.edu/people/faculty/beskow/ of Duke University and linkurl:Wylie Burke,;http://depts.washington.edu/bhdept/facres/wb_bio.html a bioethicist and medical geneticist at the University of Washington, asserted that research context, including the depth of the relationship between research and trial subject and the vulnerability and demographics of the study population, is a crucial consideration. Taylor and Burke took the time to share their positions with __The Scientist__. Click on the audio clips below to hear the 3-part debate about when researchers are obliged to share genomic data with study participants.

Download Flash player to listen to The return of genetic results: Part I


The return of genetic results: Part I

Download Flash player to listen to The return of genetic results: Part II


The return of genetic results: Part II

Download Flash player to listen to The return of genetic results: Part III


The return of genetic results: Part III

**__Related stories:__***linkurl:Web genomics exposes ethics gaps;http://www.the-scientist.com/news/display/57512/
[24th June 2010]*linkurl:NIH genetic database "a good start";http://www.the-scientist.com/news/display/53554/
[31st August 2010]*linkurl:The Ethical Use of Unpublished DNA Sequences;http://www.the-scientist.com/article/display/15177/
[December 2004]
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Avatar of: WALTER WOLF

WALTER WOLF

Posts: 3

August 3, 2010

The American Association for Cancer Research (AACR) explored this topic at its 2008 Ethics session: Ethical Issues in Cancer Genetics: Advances in Molecular Genetic Analyses of Familial Cancer Syndromes: Ethical Dilemmas Stimulated by Scientific Progress\nThe specific presentations were: \n1. Genetic Testing of Minors and Parental Disclosure of BRCA test results.\nOlufunmilayo Olopade, Ph.D. Professor of Medicine and Director, Center for Clinical\nCancer Genetics. University of Chicago\n2. Genetic Testing for Rare Syndromes: Working with families with limited information.\nJudy E. Garber, MD MPH, Dana Farber Cancer Institute\n3. Disclosure of information: when is it ethical to disclose and when is it ethical to\nwithhold?\nAlexander M. Capron, LLB, University of Southern California

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