A new Michigan State University study, published in the Journal of the American Medical Association, indicates that most people are willing to donate just knowing that their contribution is going toward research. But, when specific scenarios are brought into the equation, that willingness changes.
“We really wanted to document the concerns people have that may affect their desire to donate,” said Tom Tomlinson, director of MSU’s Center for Ethics and Humanities. “Biobanks are becoming more and more important to health research, so it’s important to understand these concerns and how transparent these facilities need to be in the research they support.”
Tomlinson, who led the study with co-author Raymond De Vries, a bioethics professor at the University of Michigan, surveyed nearly 1,600 people within the United States and found 68 percent were willing to donate using a blanket consent method. This approach gives a biobank one-time permission to use a donation for whatever research they deem acceptable.
Yet, that percentage drops when specific projects are mentioned dealing with abortion, vaccines, embryonic stem cells and studies used for commercial profit. More than half of the participants refused to give blanket consent if their sample might be used in research involving abortion, while 45 percent would not give this type of permission if it might be used for commercial purposes.
The only project that saw an increase in donor willingness involved the creation of stem cells to grow tissues or organs for use in research. Seventy percent indicated they would give blanket consent knowing the biobank might sponsor this type of study.
“These scenarios present people with a moral question where they have to balance their competing goals,” Tomlinson said. “They want to contribute to medical progress, but on the other hand, there are certain things they don’t want to be involved in.”
Tomlinson said these results give biobanks reason to rethink the way they get consent and how transparent they need to be about the research they support, without making the process more difficult on the donor and more costly on the facility.
“In the end, the recruitment of donors is essential to the success of biobanks,” Tomlinson said. “As research efforts continue to grow, getting more people to donate becomes even more important. These concerns have to be addressed in order to control possible effects on donation rates in the future.”
The National Institutes of Health funded the three-year project.
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