Research participation often is viewed as a selfless act, with participants enrolling in studies with little expectation of reward or benefit in return. The assumption is most participate with the anticipation findings from research will help others. Investigators explored if this perception also was true in terms of allowing one’s health information to be used.
“We wanted to understand the extent to which altruism, the sacrifice of one’s well-being without expectation of reward to oneself, is associated with the belief that people have an ethical obligation to allow their health information to be used for research,” says Minakshi Raj, PhD, MPH, an assistant professor in the department of kinesiology and community health at the University of Illinois at Urbana-Champaign.
Raj and colleagues surveyed 2,069 adults to learn how altruism contributes to the belief in an ethical obligation to share health information for research.1 “Sharing health information can be a relatively passive act and an easy way for people to contribute altruistically to research,” Raj says.
The study’s findings suggest this belief is shaped by altruism, by one’s experience with healthcare, and by general concerns on the use of personal information. The authors explored the relationship between feeling obligated to share health information and altruism, along with the conditions under which participants might not believe they have to share their health information, according to Raj.
Raj and colleagues found a person’s belief in an obligation to share health information for research is complex. Altruism is associated with this belief, but so are notions of trust and privacy. They were surprised to find perceiving that discrimination based on ethnicity or race occurs in the health system was associated with a greater likelihood of believing there is an ethical obligation to share health information for research, according to Raj. It is possible that perceiving discrimination makes people believe that allowing their health information to be shared could improve well-being and healthcare for communities that have been affected by discrimination.
Jodyn Platt, PhD, MPH, another study author, says these findings should “prompt ethicists in the clinical setting to challenge assumptions about risks and benefits.” Ethicists can do this by engaging in deeper dialogue with research participants, says Platt, an assistant professor in the division of learning and knowledge systems at the University of Michigan. Researchers could ask direct questions such as: “What are your expectations about participating in research?” or “What are your hopes and concerns?”
As for ethical implications on the findings, Raj says assumptions about willingness to participate (or not participate) in research should be questioned. Just because people are generous and selfless, one cannot assume they are comfortable or willing to share their health information. “Similarly, just because people have had negative experiences of discrimination does not mean they are reluctant to help others,” Raj says.
The findings underscore the importance of good informed consent. Participants should understand how their health information will be used and, ideally, have a say in it. “Ethicists might think about new ways to show participants appreciation for their contribution to science and society,” Raj offers.
The study’s findings suggest general altruism is different from the obligation to allow sharing of health information. “If we want to make an argument that people are obligated to participate in research, including research that uses only their health information, we need to find ways to recognize that participants are handing over their personal information for a cause that they may never benefit from personally,” Raj says.
- Raj M, De Vries R, Nong P, et al. Do people have an ethical obligation to share their health information? Comparing narratives of altruism and health information sharing in a nationally representative sample. PLoS One 2020;15:e0244767.