Center Director Dr. Tom Tomlinson and Raymond G. De Vries, Co-Director of the Center for Bioethics and Social Sciences in Medicine at University of Michigan, have co-authored the article “Americans want a say in what happens to their donated blood and tissue in biobanks.” The authors discuss biobank donations, precision medicine, genetics, privacy, and consent.
The last time you went to a hospital, you probably had to fill out forms listing the medications you are taking and updating your emergency contacts. You also might have been asked a question about what is to be done with “excess tissues or specimens” that may be removed during diagnosis or treatment. Are you willing to donate these leftover bits of yourself (stripped of your name, of course) for medical research?
If you are inclined to answer, “Sure, why not?” you will join the majority of Americans who would agree to donate, allowing your leftovers, such as blood or unused bits from biopsies or even embryos, to be sent to a “biobank” that collects specimens and related medical information from donors.
But what, exactly, will be done with your donation? Can the biobank guarantee that information about your genetic destiny will not find its way to insurance companies or future employers? Could, for example, a pharmaceutical company use it to develop and patent a new drug that will be sold back to you at an exorbitant price?
These questions may soon become a lot more real for many of us.
Read the full piece at The Conversation.
Related reading: “Understanding the Public’s Reservations about Broad Consent and Study-By-Study Consent for Donations to a Biobank: Results of a National Survey” published July 14, 2016 in PLoS ONE, an open-access peer-reviewed journal. Authors: Raymond Gene De Vries, Tom Tomlinson, Hyungjin Myra Kim, Chris Krenz, Diana Haggerty, Kerry A. Ryan, Scott Y. H. Kim.