Public Preferences for Addressing Donors' Moral Concerns about Biobank Research

描述(申请人提供)：随着生物库研究的重要性日益增加，人们对如何保护捐赠者的利益提出了担忧。目前的道德框架主要侧重于保护捐赠者的福利和隐私免受风险。然而，很少有系统的经验、规范或政策关注捐赠者的非福利利益，即对以下问题的道德、社会或宗教影响的关注 研究使用他们的捐赠可能会影响他们的捐赠意愿。尽管重要的理论讨论、委员会报告中的提及以及几项定性研究的见解都引起了人们对这些利益的严重性质的关注，但我们缺乏用于政策制定的重要数据：(1)关于非福利利益潜在影响的性质和程度的系统数据，以及(2)公众的高质量(即，知情和考虑过的)政策偏好，说明如何平衡这些非福利利益与生物库研究的承诺。我们的项目将通过两个相辅相成的项目来填补这些空白。首先，一项全国性的调查将评估非福利利益对生物库研究的潜在影响的轮廓，通过解决：哪些类型的非福利利益对捐赠生物材料的意愿有重大影响？这些利益有多普遍？捐赠者在捐赠时对这些非福利利益的潜在参与有多大了解？非福利利益如何受到种族或民族、社会经济地位、信任等因素的影响？ 医学研究、宗教信仰和实践，还是政治取向？其次，我们将利用一种民主的审议方法，即受试者将参加全天的教育和同行审议会议，就如何处理生物库的公共利益和潜在捐赠者之间相互冲突的非福利利益之间的紧张关系，获得公众经过深思熟虑和知情的判断。审议的影响将使用随机的实验设计进行验证。总而言之，尽管非福利利益对于生物库研究具有伦理意义，但关于它们的潜在影响和潜在的政策解决方案，缺乏系统的数据。这个项目将对非福利利益的潜在影响提供高度概括的评估，并根据公众知情和深思熟虑的意见提出政策建议。

DESCRIPTION (provided by applicant): With the growing importance of biobank research, concerns have been raised about how to protect the interests of donors. The current ethics framework mainly focuses on protecting against risks to donors' welfare and to their privacy. However, there has been little systematic empirical, normative, or policy focus on the non-welfare interests of donors, i.e., concerns about the moral, societal, or religious implications of research using their donation that may affect their willingness to donate. Although important theoretical discussions, mentions in commission reports, and insights from several qualitative studies have drawn attention to the serious nature of these interests, we lack important data for policy development: (1) systematic data on the nature and extent of potential impact of non-welfare interests and (2) high quality (i.e., informed and considered) policy preferences of the public addressing how to balance these non-welfare interests with the promise of biobank research. Our project will fill these gaps with two complementary projects. First, a national survey will assess the contours of the potential impact of non-welfare interests on biobank research, by addressing: what kinds of non-welfare interests substantially affect willingness to donate biological materials?; how common are these interests?; how much do donors want to know about the potential involvement of such non-welfare interests when donating?; how are non-welfare interests affected by such factors as race or ethnicity, socioeconomic status, trust in medical research, religious beliefs and practice, or political orientation? Second, we will obtain considered, informed judgments of the public regarding how to handle the tension between the public good of biobanks and the conflicting non-welfare interests of potential donors, using a democratic deliberation method in which subjects will attend an all-day education and peer deliberation session. The impact of the deliberation will be validated using a randomized, experimental design. In summary, despite the ethical significance of non-welfare interests for biobank research, there is a paucity of systematic data regarding both their potential impact and the potential policy solutions. This project will provide a highly generalizable assessment of the potential impact of non-welfare interests as well as policy recommendations based on informed, deliberative opinions of the general public.