My DNA, My Results

Are donors of biological material privy to research results that stem from their donation?

By | March 22, 2012

Flickr, Official U.S. Navy Imagery

FLICKR, OFFICIAL U.S NAVY IMAGERY

People who have donated biological material and data to science have a right to be informed of any significant discoveries that may arise from research down the line, a National Institutes of Health-funded committee. In a statement signed by 26 experts and published earlier this week, the committee concluded that biobanks housing donated materials, as well as researchers working on them, should shoulder the responsibilities of contacting and sharing any incidental findings with the original donors.

Currently, less than half of US biobanks return results to the donors of biological material, Nature reported. The NIH-funded committee, led by Susan Wolf of the University of Minnesota Law School in Minneapolis, suggested that biobanks create committees specialized for this purpose.

However, there are worries about the ethical and logistical implications of keeping track of the identities and contact information of donors, as well as the costs.

“It's unfortunate that the authors of the consensus statement didn't discuss the cost implications of what they're proposing, because what they have in mind is going to be expensive and difficult, particularly at a time when funding success is as low as it's ever been,” Ellen Wright Clayton, a pediatrician and lawyer at the Center for Biomedical Ethics and Society at Vanderbilt University in Nashville, told Nature.

Read a recent opinion piece about increasing the participation of donors in biomedical studies, and how openness can foster better research.

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Comments

Avatar of: Kumar Sambamurti

Kumar Sambamurti

Posts: 1

March 26, 2012

Unfortunately, no single piece of data is useful in isolation. Even a mutation found in only one person is identified in the context of the wild type in the normal population.  Moreover, providing customized data for a particular donor other than clinically accepted pathology reports is likely to generate privacy problems, as well as fear and confusion from half-baked hypotheses. It is probably more important for investigators to share financial rewards of intellectual property generated from the donors with the all the donors involved as a group and to a greater extent with donors who have contributed more support and effort to the donation process. This sort of automatic flat monetary compensation should probably be extended to tissue donors for transplantation as well. In all these cases, we need to acknowledge that we can never adequately compensate the donors for their kindness, but are only providing a token of appreciation and recognition, whenever we do achieve any success using their contributions. 

Avatar of:

Posts: 0

March 26, 2012

Unfortunately, no single piece of data is useful in isolation. Even a mutation found in only one person is identified in the context of the wild type in the normal population.  Moreover, providing customized data for a particular donor other than clinically accepted pathology reports is likely to generate privacy problems, as well as fear and confusion from half-baked hypotheses. It is probably more important for investigators to share financial rewards of intellectual property generated from the donors with the all the donors involved as a group and to a greater extent with donors who have contributed more support and effort to the donation process. This sort of automatic flat monetary compensation should probably be extended to tissue donors for transplantation as well. In all these cases, we need to acknowledge that we can never adequately compensate the donors for their kindness, but are only providing a token of appreciation and recognition, whenever we do achieve any success using their contributions. 

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