Gornick Michele C, Ryan Kerry A, Kim Scott Y H
VA Ann Arbor Center for Clinical Management Research, MI, USA University of Michigan, Ann Arbor, USA.
University of Michigan, Ann Arbor, USA.
J Empir Res Hum Res Ethics. 2014 Oct;9(4):22-33. doi: 10.1177/1556264614544277. Epub 2014 Aug 11.
The ethical debate surrounding biobanks has focused on protecting donors' welfare and privacy. However, little attention has been given to the ethical significance of donor interests that go beyond privacy and welfare (non-welfare interests [NWIs]), such as their concerns about the moral or religious implications of researchers using their donated samples. Using an experimental survey design with 1,276 participants recruited via Amazon Mechanical Turk (MTurk), we studied the potential impact of eight NWI scenarios on people's attitudes toward research studies being performed on samples donated to biobanks by assessing willingness to donate, attitudes toward disclosure of NWIs, impact of timing and format of disclosure (number of NWIs disclosed on a page), and participant factors associated with willingness to donate. Baseline willingness to donate to biobanks prior to any mention of NWIs was comparable with previous studies, at 85% to 89%. Most participants wanted NWI disclosures prior to donation to biobanks, but far fewer favored specific consent. Overall pattern of responses showed that as participants receive more information about NWIs, willingness to donate decreases in a scenario dependent manner. Specifically, NWI concerns about profit seeking research and insurance risk assessment had the strongest impact, even greater than controversial issues such as reproductive research, regardless of political, religious, and most other characteristics of respondents. Based on the results, a schema of NWI types is proposed that could be used for further research and policy discussions.
围绕生物样本库的伦理辩论主要集中在保护捐赠者的福利和隐私上。然而，对于捐赠者利益超出隐私和福利范畴（非福利利益[NWIs]）的伦理意义却鲜有关注，比如他们对研究人员使用其捐赠样本的道德或宗教影响的担忧。我们通过亚马逊土耳其机器人（MTurk）招募了1276名参与者，采用实验性调查设计，通过评估捐赠意愿、对非福利利益披露的态度、披露时间和形式（页面上披露的非福利利益数量）的影响以及与捐赠意愿相关的参与者因素，研究了八种非福利利益情景对人们对于在捐赠给生物样本库的样本上进行研究的态度的潜在影响。在未提及任何非福利利益之前，捐赠者对生物样本库的基线捐赠意愿与之前的研究相当，为85%至89%。大多数参与者希望在向生物样本库捐赠之前了解非福利利益披露情况，但支持特定同意的人要少得多。总体反应模式表明，随着参与者获得更多关于非福利利益的信息，捐赠意愿会以情景依赖的方式下降。具体而言，对逐利性研究和保险风险评估的非福利利益担忧影响最大，甚至超过了生殖研究等有争议的问题，而与受访者的政治、宗教和大多数其他特征无关。基于这些结果，我们提出了一个非福利利益类型的模式，可用于进一步的研究和政策讨论。
