University of Tartu, Tartu, Estonia.
J Empir Res Hum Res Ethics. 2023 Oct;18(4):284-295. doi: 10.1177/15562646231181028. Epub 2023 Jun 20.
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.
大规模生物银行捐赠者招募活动的社会和伦理影响仍未得到充分研究。我们以爱沙尼亚基于人群的基因生物库的两个最近的活动为例,展示活动发言人如何通过以下方式试图说服潜在捐赠者:(1)获得自我认识,(2)控制自己的健康,(3)对疾病的恐惧,(4)为医疗保健做出贡献,(5)为科学做出贡献,以及 (6)为自己的国家做出贡献。虽然这些活动成功招募了该国 15%的成年人口作为捐赠者,但我们解释了使用其中一些呼吁可能会造成的影响:(a) 对捐赠者可能获得的收益产生不切实际的期望;(b) 掩盖健康数据方面的风险。本研究为爱沙尼亚生物库招募活动的伦理未来实证研究奠定了必要的基础。