Informed Consent Teases Out Research Ethics On The Stage

Informed Consent is currently in its New York premiere run at the Duke at 42nd Street through September 13.  The play was written by Deborah Zoe Laufer and is a fictionalized drama about the case of the Havasupai Tribe in Arizona and its lawsuit against researchers at Arizona State University.  The case concerns the use of blood samples taken from tribe members by the researchers.  While the samples were taken voluntarily for the purposes of a diabetes study, the use of these samples in subsequent research prompted the lawsuit.  (The lawsuit eventually ended in an out-of-court settlement, not the most dramatically satisfying of conclusions.)

Laufner was featured on a recent segment of Science Friday, where she talked with Ira Flatow about the play, the case, and the ethics involved in genetic research, informed consent, properly managing genetic data, and issues of identity.  While the court case started over 25 years ago, the challenges of determining how to practically ensure ethically-informed consent for the drawing of samples and use of genetic information.  The ultimate resolution of the case prevented the establishment of relevant case law to inform subsequent court cases.

The court case also raised an issue about genetic migration studies.  Determining the genetic ancestry of individuals can conflict with family and/or cultural understanding of where people came from.  And while individuals being tested might accept such a conflict, there are others who would be exposed to the conflict that were not consulted about the testing.  Figuring out how to set boundaries in such matters is something worthy of consideration by the Presidential Commission for the Study of Biomedical Issues.

But none of that necessarily makes for a good play.  Readers in the New York area (or visiting) still have a few days to check out Informed Consent.

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