The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.
The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.
复制标题
DOI：
10.1186/s40504-016-0036-4
复制
发表时间：
2016
影响因子：
--
通讯作者：
Kim SY
中科院分区：
文献类型：
--
作者：
De Vries RG;Tomlinson T;Kim HM;Krenz CD;Ryan KA;Lehpamer N;Kim SY
生物库的捐赠者通常会被要求给予全面同意，允许他们的捐赠用于生物库授权的任何研究。这种类型的同意忽略了一些捐赠者对其捐赠的未来用途存在道德、宗教或文化担忧的证据——我们称之为“非福利利益”的担忧。非福利利益的性质及其对生物样本库捐赠意愿的影响尚不清楚。为了更好地了解非福利利益的影响，我们使用基于概率的互联网面板对美国人口进行了全国样本调查（2014 年 6 月）。当提出 7 种可能引起非福利利益担忧的研究情景时，逻辑回归模型评估了与参与者同意其捐赠的未来用途的意愿相关的人口统计和态度特征。大多数人都有非福利利益，这会严重影响他们使用一揽子同意向生物库捐赠的意愿。一些非福利利益与子群体相关，但另一些则不然。一般来说，对生物医学研究的积极态度与捐赠意愿的增加有关，而对隐私和非裔美国人身份的担忧则与捐赠意愿的下降有关。非福利利益很重要，可能会降低向生物样本库捐款的意愿。我们的数据表明，对研究的信任会提高捐赠意愿。忽视非福利利益可能会削弱这种信任。捐助者的非福利利益可以通过提高透明度和更容易获取有关捐款用途的信息来满足。
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.