Tag: CBSSM

Would you donate to a biobank?

Tom TomlinsonCenter 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.

Dr. Stahl presents at CBSSM Research Colloquium

Stahl headshotThe Center for Bioethics and Social Sciences in Medicine (CBSSM) at University of Michigan held its 5th annual Research Colloquium on April 27, 2016. Assistant Professor Dr. Devan Stahl attended and presented on the patients’ right not to know their prognosis, and topic that generated much conversation among the participants both during and after the presentation.

The colloquium brought together scholars working in a variety of areas of bioethics. Presentations included topics such as clinical ethics consultation,  medical insurance, VIP patients, breastfeeding, gene sequencing and community engagement in research. Overall, it was a very engaged group who had much to offer one another on a variety of interesting topics.

Abstract: There is a widespread presumption within medicine that terminally ill patients have a “right not to know” their prognosis. Guidelines for giving bad news (SPIKES; ABCDE) all require that the patient be asked first. There may be a dark side to this practice, however: terminally ill patients’ ignorance or denial of their prognosis too often lasts to the very end, one important factor discouraging timely referral and use of palliative and hospice care. Because of a possible link between a right not to know one’s prognosis and the aggressive treatment that patients with advanced illness too often receive at the end of life, the claim that there is a right not to know needs much more serious examination than it has received.

The authors argue that patients with advanced illness do not have a right not to know their prognosis. Withholding prognostic information in deference to a right not to know impedes patients’ capacity to make informed autonomous decisions about their treatment, encourages denial, and increases the likelihood of poor end of life care.