Posted by: Barbara Bibel
I just finished reading The Immortal Life of Henrietta Lacks by Rebecca Skloot. It tells the story of the HeLa cell, which was the beginning of a great deal of important biomedical research using human tissue culture. HeLa cells came from a tumor in Henrietta's body, but neither she nor her family consented to any tissue donation or participation in medical research. At the time that this happened, there were no formal regulations dealing with research on human subjects. It was assumed that poor patients, many of whom were African American, receiving free medical care "paid" by serving as research subjects. The independent review boards that now exist for all research involving human subjects began because of what happened to Henrietta and other poor patients. Coincidentially, President Obama announced a new Presidential Commission for the Study of Bioethical Issues in today's Federal Register. Since we can expect reference questions about these issues, here is a wonderful resource. The Kennedy Institute of Ethics at Georgetown University is a major clearing house for bioethics information. Users may find links to resources on special topics (Asian bioethics, Catholic bioethics, Jewish bioethics), search literature, retrieve bibliographies on bioethics topics, and find publications and news. The site also has links to the National Reference Center for Bioethics Literature, the National Information Resource on Ethics and Human Genetics, the National Bioethics Advisory Commission Digital Archive, and the International Bioethics Exchange Program. This is a treasure trove of information. If you plan to attend either the Medical Library Association or ALA annual conference in D.C. this year, visit the library and see it for yourself.