From the Archives — Immortal Life: The Promises and Perils of Biobanking and the Genetic Archive

Direct-to-consumer genetic testing has been in the news this week with the recent IPO of 23andMe. Thus, we are revisiting our forum from September 2017 on biobanking, genetics, and the competing interests of individuals, businesses, and society in the collection and use of genetic samples. ------- Are we now approaching a time when we could all live, at least in freezers, forever? Modern collection and storage of biological samples make possible a kind of "immortality" for anyone who has ever had a saliva sample frozen for genealogical testing or a blood sample stored in medical collections. New technologies, like CRISPR for gene editing, expand possible future uses of biological materials stored around the world. The story of Henrietta Lacks, popularized in a book by Rebecca Skloot and an HBO special starring Oprah Winfrey, illustrates the ways that a single person's cells and tissues can take on lives of their own as research material. In 1953, just before her death, Lacks's cancer cells yielded the oldest and most common human cell line still used in research. There has been significant public interest in her remarkable story, but the "immortality" of people like Henrietta Lacks raises pressing questions for all of us. Who owns and controls bodily materials extracted from research subjects and patients? Who can profit from the cells and genes that make us who we are? How do we weigh the value of personal privacy and an individual’s sense of self against the potential for medical progress? How do imbalances of wealth and power influence questions of consent, exploitation, and identity for people who provide biological materials? These questions framed a public forum organized by the Consortium and hosted by the American Philosophical Society on September 28, 2017. Find this presentation and further resources on the Consortium's website at: www.chstm.org/video/51