De Vries Raymond G, Tomlinson Tom, Kim H Myra, Krenz Chris D, Ryan Kerry A, Lehpamer Nicole, Kim Scott Y H
Center for Bioethics and Social Sciences in Medicine (CBSSM), University of Michigan, 2800 Plymouth Road, North Campus Research Complex (NCRC), B16-419 W, Ann Arbor, MI, 48109-2800, USA.
Center for Ethics and Humanities in the Life Sciences, Michigan State University, C-223 East Fee Hall, 965 Fee Road Rm C-208, East Lansing, MI, 48824, USA.
Life Sci Soc Policy. 2016;12:3. doi: 10.1186/s40504-016-0036-4. Epub 2016 Mar 11.
Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have moral, religious, or cultural concerns about the future uses of their donations - concerns we call "non-welfare interests". The nature of non-welfare interests and their effect on willingness to donate to a biobank is not well understood.In order to better undersand the influence of non-welfare interests, we surveyed a national sample of the US population (in June 2014) using a probability-based internet panel. Logistic regression models assessed the demographic and attitudinal characteristics associated with participants' willingness to give consent for unspecified future uses of their donation when presented with 7 research scenarios that raised possible non-welfare interest concerns. Most people had non-welfare interests that significantly affect their willingness to donate to a biobank using blanket consent. Some non-welfare interests are associated with subgroups but others are not. A positive attitude toward biomedical research in general was associated with increased willingness to donate, while concerns about privacy and being African American were associated with decreased willingness.Non-welfare interests matter and can diminish willingness to donate to a biobank. Our data suggest that trust in research promotes willingness to donate. Ignoring non-welfare interests could erode this trust. Donors' non-welfare interests could be accommodated through greater transparency and easier access to information about the uses of donations.
生物样本库的捐赠者通常被要求给予全面同意，允许其捐赠用于生物样本库授权的任何研究。这种同意方式忽视了一些证据，即一些捐赠者对其捐赠的未来用途存在道德、宗教或文化方面的担忧——我们将这些担忧称为“非福利利益”。非福利利益的性质及其对向生物样本库捐赠意愿的影响尚未得到充分理解。为了更好地理解非福利利益的影响，我们在2014年6月使用基于概率的互联网面板对美国全国人口样本进行了调查。逻辑回归模型评估了在呈现7种引发可能的非福利利益担忧的研究场景时，与参与者同意其捐赠用于未指定未来用途的意愿相关的人口统计学和态度特征。大多数人都有非福利利益，这些利益会显著影响他们通过全面同意向生物样本库捐赠的意愿。一些非福利利益与亚群体相关，但其他一些则不然。总体上对生物医学研究持积极态度与捐赠意愿增加相关，而对隐私的担忧以及非裔美国人身份则与捐赠意愿降低相关。非福利利益很重要，会降低向生物样本库捐赠的意愿。我们的数据表明，对研究的信任会促进捐赠意愿。忽视非福利利益可能会侵蚀这种信任。通过提高透明度和更容易获取有关捐赠用途的信息，可以顾及捐赠者的非福利利益。
