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.

项目摘要/摘要 随着生物库研究的重要性，人们对如何保护的利益引起了人们的关注 捐助者。当前的道德框架主要集中于保护捐助者福利及其隐私的风险。 但是，几乎没有系统的经验，规范或政策关注捐助者的非福利利益，即 对研究可能会影响其研究的捐赠对研究的道德，社会或宗教含义的关注 愿意捐款。尽管重要的理论讨论，但在委员会报告中提到了 一些定性研究引起了人们对这些兴趣的严重性的关注，我们缺乏重要的政策数据 开发：（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 （即已知和考虑的）公众的政策偏好，以解决这些非福利利益之间的平衡 生物银行研究的希望。 我们的项目将通过两个补充项目填补这些空白。首先，全国调查将评估轮廓 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 实质上影响捐赠生物材料的意愿？这些利益有多普遍？捐助者多少钱 想知道捐赠时这种非福利利益的潜在参与吗？非福利如何 受种族或种族，社会经济地位，对医学研究的信任，宗教信仰和 练习还是政治取向？其次，我们将获得有关公众的考虑，知情的判决 处理生物库的公共利益与潜在捐助者的非福利利益之间的紧张关系， 使用民主审议方法，主题将参加全天的教育和同伴审议。 审议的影响将使用随机，实验设计进行验证。 总而言之，尽管非福利利益对生物库研究具有道德意义，但很少 有关其潜在影响和潜在政策解决方案的系统数据。该项目将提供高度 可概括地评估非福利利益的潜在影响以及基于政策建议 公众的知情，审议意见。