Blanket consent—the most common form of permission asked of potential biobank donors—garnered the highest “willingness” scores in a survey that asked participants to evaluate different consent scenarios. Consent scenarios that highlighted specific moral concerns tended reduce survey respondents’ willingness to donate tissue specimens.
The survey, which included nearly 1,600 individuals, indicated that when blanket consent language was used, 68% of respondents indicated a willingness to donate. When various “even if” scenarios were used, survey respondents generally indicated lower degrees of willingness.
Scenarios specifically citing research programs such as safer abortion methods, commercial development, vaccines to protect against biological weapons, and understanding propensities for violent behavior had lower willingness responses. They fell to 49.5, 55.2, 56.6, and 58.1%, respectively. A scenario about using kidney stem cells to grow human kidneys in pigs was associated with a willingness of 64.2%.
The only exception to the trend concerned a more general stem cell scenario. The development of stem cell lines based on the donor’s genetic code was associated with a willingness of 70.1%.
These results appeared January 27 in JAMA, in a Research Letter entitled, “Moral Concerns and the Willingness to Donate to a Research Biobank.” According to the Research Letter, survey participants were recruited to be representative of the U.S. population.
“Previous studies suggest that donors may have moral, religious, and cultural concerns about the use to which their specimens are put, which may affect their willingness to give blanket consent,” wrote the authors. “These earlier studies, however, surveyed groups that were not representative of the U.S. population.”
Participants who provided responses to the current survey were older (51 years versus 45 years for nonrespondents), were more commonly white, and had higher levels of education and household income.
The current survey, which was led by Tom Tomlinson, Ph.D., and Raymond de Vries, Ph.D., of Michigan State University, also gave respondents short descriptions of the benefits and consequences of five methods of gaining consent and asked them to indicate which were the acceptable, best, and worst options.
When respondents were asked about different approaches to gaining consent, 43.6% found the blanket consent method to be unacceptable. Specific consent, in which donors are asked to consent to each study using their specimen, was considered the worst option by 45.0%. These findings suggest “that an adequate approach for dealing with donors’ moral concerns may lie between these two extremes,” the authors indicated.
“We really wanted to document the concerns people have that may affect their desire to donate,” said Dr. Tomlinson. “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.”
Dr. Tomlinson added the study’s 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: “[People] want to contribute to medical progress, but on the other hand, there are certain things they don't want to be involved in.”
“The recruitment of donors is essential to the success of biobanks,” Dr. Tomlinson concluded. “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.”