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: 8737928
• 负责人: RAYMOND G DE VRIES
• 金额: $ 55.95万
• 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/8737928
• 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

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.

描述（由申请人提供）：随着生物银行研究的重要性日益提高，人们开始关注如何保护捐赠者的利益。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，即对道德、社会或宗教影响的关注