Public Preferences for Addressing Donors' Moral Concerns about Biobank Research

公众对解决捐赠者对生物样本库研究的道德担忧的偏好

• 批准号: 8627685
• 负责人: RAYMOND G DE VRIES
• 金额: $ 52.81万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-09-20 至 2016-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8627685
• 关键词: Address; Affect; Attention; Belief; Biocompatible Materials; Conflict (Psychology); Consent; Data; Development; Disclosure; Education; Equilibrium; Ethics; Ethnic Origin; Experimental Designs; Face; Facies; General Population; Individual; Informed Consent; Judgment; Knowledge; Link; Medical Research; Methods; Mission; Modeling; Morals; Nature; Persons; Policies; Policy Developments; Policy Research; Privacy; Process; Race; Randomized; Recommendation; Regulation; Relative (related person); Religion and Spirituality; Religious Belief; Reporting; Research; Research Project Grants; Research Support; Resources; Risk; Sampling; Science; Social Welfare; Socioeconomic Status; Solutions; Statistical Models; Surveys; Trust; Withdrawal; base; biobank; cost; data sharing; insight; interest; peer; preference; public health relevance; research study; social; willingness

Project Summary/Abstract 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.

项目总结/摘要 随着生物库研究的日益重要，人们对如何保护生物库研究者的利益提出了担忧。 捐助者。目前的道德操守框架主要侧重于保护捐助者的福利和隐私免受风险。 然而，很少有系统的经验，规范，或政策的重点是捐助者的非福利利益，即， 对使用他们的捐赠进行研究的道德、社会或宗教影响的担忧， 愿意捐赠。虽然重要的理论讨论，在委员会报告中提到， 一些定性研究已经引起了人们对这些利益的严重性的关注，我们缺乏政策制定的重要数据。 发展：（1）关于非福利利益潜在影响的性质和程度的系统数据;（2）高质量的 (i.e.,（了解情况并经过深思熟虑）公众的政策偏好，解决如何平衡这些非福利利益， 生物库研究的前景 我们的项目将通过两个互补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，通过解决：什么样的非福利利益 是否会对捐赠生物材料的意愿产生实质性影响？这些兴趣有多普遍？捐赠者有多少 想知道捐赠时这种非福利利益的潜在参与吗？非福利 受种族或族裔、社会经济地位、对医学研究的信任、宗教信仰和 实践，还是政治导向？第二，我们将获得公众关于如何 处理好生物银行的公共利益和潜在捐赠者的非福利利益之间的矛盾， 采用民主评议方式，受试者参加全天教育和同侪评议会。 审议的影响将使用随机实验设计进行验证。 总之，尽管生物库研究的非福利利益具有伦理意义， 关于其潜在影响和潜在政策解决方案的系统数据。该项目将提供一个高度 对非福利利益的潜在影响的普遍评估以及基于以下方面的政策建议： 公众知情的、深思熟虑的意见。