Abstract
The social and ethical implications of large-scale biobank donor recruitment campaigns have remained understudied. We use two recent campaigns of the population-based genetic biobank in Estonia as an example to demonstrate how campaign spokespersons try to persuade potential donors by appealing to (1) gaining self-knowledge, (2) gaining control over one's health, (3) fear of illness, (4) contributing to healthcare, (5) contributing to science, and (6) contributing to one's country. While these campaigns succeeded in recruiting 15 percent of the country's adult population as donors, we explain how the use of some of these appeals may (a) create unrealistic expectations regarding the benefits donors could receive and (b) conceal the risks regarding health data. The study lays a necessary groundwork for future empirical research on the ethics of biobank recruitment campaigns.
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More From: Journal of Empirical Research on Human Research Ethics
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