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Informed Consent: Genomics Video

This collection of video and text resources reviews informed consent and participatory research practices using three case studies: The Lacks Family, The Trevino Family (Embryonic Stem Cell Controversy), and the Havasapai (Informed Consent and Medical Research). The weekly program Religion & Ethics Weekly analyzes contemporary issues in biomedicine using cases studies and human stories and both video clips review how advances in genomic data lead to controversial choices about what our genes can and cannot tell us about our health, our identity, and our lineage. The two programs, the news articles and the policy forum collectively review new proposals regarding informed consent in the new genomic era. Garrison is a contributing author of the online resource “Genetics Resource Center”, which was developed by the National Congress of American Indians to educate communities about genomic research regarding issues of privacy and ownership and to provide model informed consent templates as well as an interactive decision guide. The last two entries provide insight on the proposal to require informed consent for de-identified boispecimens for any research in the US supported by federal funding. As of 2017, with the adoption of the changes to the "Common Rule," de-identified biospecimens can be collected and used without informed consent.


  1. Video News: Sparkman, S. 2013. The HeLa Cell Genome Published, Causes Privacy Controversy. Newsy. Dailymotion.  Link
  2. Video News: Picht, M.  Aug 7, 2013. Henrietta Lacks’ Family Finally Gets Say in Genome Research. Newsy.Dailymotion. (2:47 min) Link
  3. Video: Thirteen/Education Broadcasting Corporation (Producer.) April 2, 2010. Religion and Ethics Weekly: Embryonic Stem Cell Controversy. (7:03min) Link
  4. Video: Thirteen/Education Broadcasting Corporation (Producer.) June 25, 2010. Religion and Ethics Weekly: Informed Consent and Medical Research. (7:22min) Link
  5. News:  Anonymous. May 2013.  Returning genetic incidental findings without patient consent violates basic rights, experts say. Link
  6. Policy Forum: Wolf, S. et al. 2013. Patient autonomy and incidental findings in clinical genomics. Science. 340(6136): 1049-50. Link
  7. Policy Forum:  McGuire, A. et al. 2013. Ethics and genomic incidental findings. Science. 340(6136): 1047-1048. Link
  8. Research Article: Garrison,N.  2012. Genomic justice for Native Americans: Impact of the Havasupai case on genetic research. Science Technology and Human Values. Link
  9. Research Article: Lehrman, S. Jan 16, 2013. Shifting Roles, Shifting Research: Collaborative Genetic Studies with Indigenous Communities.  SACNAS. Link
  10. Opinion: Kish, L and E. Topal. Sept 2015. Unpatients—why patients should own their medical data. Nature Biotechnology.33(9):921-924. Link
  11. Blog: Chamany, K. Nov 19, 2015. New Rules Proposed to Address Privacy and Trust in the Precision Medicine Initiative. Biopolitical Times. Center for Genetics and Society. Link
  12. Review Article: Berskow, L. 2016. Lessons from HeLa cells: The ethics and policy of biospecimens. Annual Review of Genomics and Human Genetics: A27. Link
  13. News: Jaschik, S. Jan 19, 2017. New ‘Common Rule’ for Research.Inside Higher Education. Link
  14. News: Lynch, H. and Joffe, S. April 2, 2017. A Lesson From the Henrietta Lacks Story: Science Needs Your Cells. New York Times.17:395-417. Link