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.
Precision medicine, a promising new approach to treating and preventing disease, will require thousands, or even millions, of us to provide samples for genetic research. So how much privacy are we willing to give up in the name of cutting-edge science? And do we care about the kinds of research that will be done with our donations?
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Precision medicine needs you
In January 2015, President Obama announced his “Precision Medicine Initiative” (PMI), asking for US$215 million to move medical care from a “one size fits all” approach to one that tailors treatments to each person’s genetic makeup. In his words, precision medicine is “one of the greatest opportunities for new medical breakthroughs that we have ever seen,” allowing doctors to provide “the right treatments at the right time, every time, to the right person.”
The PMI is now being implemented, and a critical part of the initiative is the creation of a “voluntary national research cohort” of one million people who will provide the “data” researchers need to make this big jump in medical care. And yes, those “data” will include blood, urine and information from your electronic health records, all of which will help scientists find the link between genes, illness and treatments.
Recognizing that there may be some reluctance to donate, the drafters of the initiative bent over backwards to assure future donors that their privacy will be “rigorously protected.” But privacy is not the only thing donors are worrying about.
Together with our colleagues at the Center for Bioethics and Social Sciences in Medicine at the University of Michigan and the Center for Ethics and Humanities in the Life Sciences at Michigan State University, we asked the American public about their willingness to donate blood and tissue to researchers.
Data from our national survey – published in the Journal of the American Medical Association – reveal that while most Americans are willing to donate to biobanks, they have serious concerns about how we ask for their consent and about how their donations may be used in future research.
What are you consenting to?
We asked our respondents – a sample representative of the U.S. population – if they would be willing to donate to a biobank using the current method of “blanket consent” where donors are asked to agree that their tissue can be used for any research study approved by the biobank, “without further consent from me.”
A healthy majority – 68 percent – agreed. But when we asked if they would still be willing to give blanket consent if their specimens might be used “to develop patents and earn profits for commercial companies,” that number dropped to 55 percent. Only 57 percent agreed to donate if there was a possibility their donation would be used to develop vaccines against biological weapons, research that might first require creating biological weapons. And less than 50 percent of our sample agreed to donate if told their specimen may be used “to develop more safe and effective abortion methods.”
You may think that some of these scenarios are far-fetched, but we consulted with a biobank researcher who reviewed all of our scenarios and confirmed that such research could be done with donations to biobanks, or associated data. And some scenarios are real. For instance, biobanked human embryos have been used to confirm how mifepristone, a drug which is used to induce miscarriages, works.