What Are You Doing with My DNA? “Informed Consent” explores deep ethical questions in genetics research

Diana Kwon in Scientific American:

ConsentTwelve years ago, members of the Havasupai Tribe entered into a legal battle with Arizona State University, over the ways in which school researchers were using blood samples from tribe members without proper informed consent. The case halted the research and the university returned the blood to the tribe, along with financial compensation. The scuffle became a landmark case in bioethics. Deborah Zoe Laufer’s play, “Informed Consent,” running through September 13 at The Duke on 42nd Street theater in New York City, dramatizes the important case. Though not meant to be an exact retelling of the story, the play provides a springboard for discussion about the importance of informed consent in scientific research.

The script follows the journey of a scientist who, motivated by the desire to understand the gene for early onset Alzheimer’s that runs in her family, seeks out an isolated Native American tribe living in the Grand Canyon. The tribe presents an ideally uncorrupted gene pool for her research. The scientist initially struggles to convince tribe members to provide samples of blood, which they consider sacred, for her studies. They eventually agree, in hope that the research will reveal genetic clues to the devastating rates of diabetes destroying their own family and friends. The individuals sign a broad consent form that the scientist has deliberately written in simple language. The tribe later learns that the researcher used the blood to study ailments that it was unaware of, including mental illness and the tribe’s geographic origins. Feeling angered and betrayed, the tribe sues the university and demands that it return the blood.

More here.