Those who read last year's Paideia text at Luther, "The Immortal Life of Henrietta Lacks" by Rebecca Skloot may be interested in this report from Reuters news service: "The National Institutes of Health announced on Wednesday that it had reached an agreement with the family of the late Henrietta Lacks, the African-American woman whose cancer cells scientists took without her permission 62 years ago and used to create an endlessly replicating cell line now used in countless labs worldwide. Under the unprecedented pact, a grandson and a great-granddaughter of Lacks, whose story was told in the 2010 best-selling book The Immortal Life of Henrietta Lacks, will help decide which biomedical researchers will have access to the complete genome data in cells derived from her cervical tumor, called HeLa cells. That data—which can be used to infer medical and other information about Lacks' family—will be stored in a secure, NIH-controlled database."
Arthur Caplan, Ph.D., head of the Division of Medical Ethics at NYU Langone Medical Center, wrote for NBC News: "The new understanding between the NIH and the Lacks family does not include any financial compensation for the family. The Lacks family hasn’t, and won’t, see a dime of the profits that came from the findings generated by HeLa cells. But this is a moral and ethical victory for a family long excluded from any acknowledgment and involvement in genetic research their matriarch made possible. It took more than 60 years, but ethics has finally caught up to a particularly fast-moving area of science: taking tissue samples for genetic research. Thanks to the efforts of a dogged journalist, some very thoughtful science leaders in Europe and the U.S., and an ordinary family willing to learn about a complex subject and then to do the right thing to help you and me and our descendants, a long-standing wrong has now been fixed." For more information read Caplan's article at: http://www.nbcnews.com/health/nih-finally-makes-good-henrietta-lacks-family-its-about-time-6C10867941.