Say scientific research could determine if you had a gene that has been linked to Alzheimer’s disease. Would you want to know about it? But say that same research couldn’t tell you how much this increases your risk for developing Alzheimer’s, nor could it tell you what to do about it. Would you still want to know then? And what if you could find out the same thing about your children?
These questions about biobank research are far from settled in the scientific community, let alone in the public. Biobanks are collections of blood and tissue samples and health data used to study large populations, specific age and ethnic groups or high-risk families. There has been some effort to include the general public in developing policies for returning research results and protecting the privacy of children during this type of research, but less is known about what minority groups think about these tough questions. A bioethicist at the University of Chicago Medicine and her colleagues recently engaged African Americans on the South Side of Chicago to assess their attitudes about contributing health information and blood samples to a biobank, and to inform them about policies that govern biobank-based research.
Biobanks are different from individual genetic testing, where a person is screened for a specific condition in order to treat them. Sometimes biobanks are used for researching a specific gene for a specific disease, but samples are often stored indefinitely for multiple research purposes that may not be known at the time a sample is taken. People donate samples to biobanks for the greater good, and the health records linked to these samples are scrubbed of any identifying information that could connect them to a specific person. But if that research finds crucial information about a disease, what is the researcher’s ethical obligation to re-identify the samples to the donors and communicate those results to the biobank participants?
Lainie Friedman Ross, MD, PhD, the Carolyn and Matthew Bucksbaum Professor of Clinical Medical Ethics at the University of Chicago Medicine, led a yearlong study of 45 African American adults who receive care at two different healthcare facilities on the South Side of Chicago. Along with Colin Halverson, a graduate student in the Department of Anthropology and Amy Lemke, a genetics researcher from the Medical College of Wisconsin, she conducted four, two-day deliberative engagement programs. The sessions began with educational modules to teach survey participants about biobanks and biobank-based research. Ross and her colleagues then asked participants questions to gauge their attitudes about participating in research and receiving results. Their findings were published in a series of four papers earlier this year.
Ross said that for the most part, what they found wasn’t surprising. “We know this from every biobank study, in the United States and internationally, that every participant says that they want information back,” she said. Despite efforts to educate the group on the difficulty and ambiguity of explaining what those results mean, their general attitudes changed very little during the study.
“We explained to them about the complexity and ambiguity of most information and the numerous hours of genetic counseling and expense that would be required to try to return the information in a meaningful way, and it didn’t make a difference,” Ross said. “They wanted the information back, and they were very clear about it.”
The most interesting responses came when participants were asked about what information they wanted to know about their children—basically, everything they wanted to know about themselves. “Nobody distinguished between themselves and their children,” Ross said. “In general the feeling was that if they wanted to know it about themselves, why wouldn’t they want to know it about their children?”
Any parent wants to know about potential medical problems in their children so they can find the right treatment. The problem is that research might discover information that isn’t relevant to a person until adulthood. Does a parent have a right to know everything about the health issues that their children may experience as adults? At what point does a parent’s right to know stop and a child’s right to privacy begin?
“The rules about engaging children in research are different than for adults,” Ross said. “We are more protective of children, in part because there’s some information you as an adult might not want your parents to have known about you. If it’s about health problems that aren’t going to hit you until age 60 or 65, and may never hit you, why do your parents need to know about it when you’re ten?”
During this project, Ross and her colleagues also encountered a common misunderstanding about basic research called “therapeutic misconception.” This is the mistaken belief by research subjects that any study they participate in will have a direct medical benefit. The participants did not understand the difference between clinical care and the kind of medical research conducted with biobanks. Ross said this is because for most people, their only interaction with physicians is in the context of traditional clinical care.
“People trust their doctor, and believe he would only do things that are going to benefit them,” she said. “What we call therapeutic misconception happens when people have so much trust in their doctor they don’t understand he’s wearing another hat as a researcher.”
In one interesting twist, they found that for this study group, the misconception also stems from mistrust. Participants expressed concern that biobank-based research would identify important health factors that could improve health, but that researchers wouldn’t share the results. They didn’t believe that the research would yield ambiguous information.
As research progresses and technology improves, initial findings could be reversed or rendered invalid. Ross said the participants in this project wanted that information anyway because they didn’t want to believe that medicine didn’t have an answer. “There’s this belief that medicine can do everything and will do everything,” she said. “The idea that we’re doing it to learn something new and novel just eluded their understanding.”
To further examine differences within the study group, Ross and her colleagues also looked for the effects of socioeconomic status on attitudes about biobank research. They compared study participants who receive primary care at a university-based practice and those at a Federally Qualified Health Clinic, and found very few differences.
Despite the difficulty they encountered trying to educate study participants about the practicality of returning research results, Ross said she was encouraged by the work overall.
“Given that this attitude about biobanks and return of results is rampant across America, I have a feeling no matter what educational materials we developed and discussed, that they wouldn’t have changed,” she said. “But the whole experience of really thinking about these issues and learning about it was viewed very positively by the community participants. You could see that the average American is really interested in this stuff. And it was eye-opening and rewarding for me and my research team to engage with them about these issues ”
Some of the study participants even offered to give samples to biobanks at the University of Chicago before they left. While that wasn’t what Ross had in mind when she started this project, any study that can make participants more interested in science and volunteer an ounce of blood is definitely worth the effort.
Halverson CM, & Ross LF (2012). Incidental findings of therapeutic misconception in biobank-based research. Genetics in medicine : official journal of the American College of Medical Genetics, 14 (6), 611-5 PMID: 22261760
Lemke AA, Halverson C, & Ross LF (2012). Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago. American journal of medical genetics. Part A, 158A (5), 1029-37 PMID: 22438108
Halverson CM, & Ross LF (2012). Engaging African-Americans about biobanks and the return of research results. Journal of community genetics PMID: 22454259
Halverson CM, & Ross LF (2012). Attitudes of African-American parents about biobank participation and return of results for themselves and their children. Journal of medical ethics PMID: 22573882