“The risks cannot be compensated”: The willingness to donate DNA for science and its relationship with economic preferences

Abstract

The accumulation of large genetic data is crucial for the scientific advancement of genetic research and precision medicine, but various participation biases threaten the validity of genetic research data sets. To better understand the decision to participate and its relationship with economic incentives and preferences, we studied the stated willingness to donate DNA for science by saliva sample in a representative panel of Dutch households. There were two randomized treatments, varying (i) the information material on benefits and risks and (ii) the intended financial incentive. The first treatment had no detectable effect, suggesting insensitivity to the information material. The higher incentive conditions had modest and diminishing effects, suggesting that offering higher incentives is not cost-effective. Stated reasons not to donate DNA concentrated on personal risks, e.g., privacy violations and data exploitation. Accordingly, stated risk willingness was found strongly associated, followed by trust and positive reciprocity. Revealed economic preferences were not associated. The results support previous findings for self-rated health, interpersonal trust and confidence in science or societal institutions but not for certain demographic variables (e.g., age, education and religiosity). We conclude by proposing strategies to encourage participation, e.g., to reallocate resources to risk-minimizing or compensatory measures.