Receptiveness to participation in genetic research: A pilot study comparing views of people with depression, diabetes, or no illness.

BACKGROUND: Genetic research in human health relies on the participation of individuals with or at-risk for different types of diseases, including health conditions that may be stigmatized, such as mental illnesses. This preliminary study examines the differences in attitudes toward participation in genetic research among individuals with a psychiatric disorder, individuals with a physical disorder, and individuals with no known illness.

METHODS: Seventy-nine individuals with a history of diabetes or depression, or no known illness, underwent a simulated consent process for a hypothetical genetic research study. They were then surveyed about their willingness to participate in the hypothetical study and their attitudes about future and family participation in genetic research.

RESULTS: Participants with and without a history of depression ranked participating in genetic and medical research as very important and indicated that they were likely to participate in the hypothetical genetics study. Expressed willingness to participate was generally stable and consistent with future willingness. Individuals less strongly endorsed willingness to ask family members to participate in genetic research.

CONCLUSION: Individuals with and without a history of mental illness viewed genetic and medical research favorably and expressed willingness to participate in real-time and in the future. Informed consent processes ideally include an exploration of influences upon volunteers' enrollment decisions. Additional empirical study of influences upon genetic research participation is important to ensure that volunteers' rights are respected and that conditions that greatly affect the health of the public are not neglected scientifically.