Public Opinion about the Importance of Privacy in Biobank Research
Public Opinion about the Importance of Privacy in Biobank Research
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DOI：
10.1016/j.ajhg.2009.10.002
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发表时间：
2009-11-13
影响因子：
9.8
通讯作者：
Hudson, Kathy L.
中科院分区：
文献类型：
--
作者：
Kaufman, David J.;Murphy-Bollinger, Juli;Hudson, Kathy L.
对隐私的担忧可能会阻止人们参与基因研究。招募和留住生物库参与者需要了解这些问题的性质和规模。一个拟议的生物库的潜在参与者被问及他们参与的意愿、他们的隐私问题、知情同意和数据共享。对4659名美国成年人进行了一项具有代表性的调查。90%的受访者会担心隐私，56%的受访者会担心研究人员拥有他们的信息，37%的受访者会担心研究数据可能会被用来攻击他们。然而，如果被要求，60%的人会参与生物库。近一半(48%)的人更愿意为监督小组批准的所有研究提供一次同意，而42%的人更愿意为每个项目单独提供同意。虽然92%的人允许学术研究人员使用研究数据，但80%和75%的人分别允许政府和行业研究人员使用。对隐私的担忧与只有当受访者被告知他们将获得50美元的参与并且不会收到个人研究结果时，参与的意愿较低有关。在被告知将获得200美元或个人研究结果的受访者中，隐私问题与意愿无关。调查受访者重视隐私和对生物医学研究的参与。尽管普遍存在隐私问题，60%的人会参与生物库。向研究参与者保证，他们的隐私将得到最大限度的保护，这可能会增加参与者对生物库数据的广泛研究用途的同意，得到广泛的研究人员的同意。
Concerns about privacy may deter people from participating in genetic research. Recruitment and retention of biobank participants requires understanding the nature and magnitude of these concerns. Potential participants in a proposed biobank were asked about their willingness to participate, their privacy concerns, informed consent, and data sharing. A representative survey of 4659 U.S. adults was conducted. Ninety percent of respondents would be concerned about privacy, 56% would be concerned about researchers having their information, and 37% would worry that study data could be used against them. However, 60% would participate in the biobank if asked. Nearly half (48%) would prefer to provide consent once for all research approved by an oversight panel, whereas 42% would prefer to provide consent for each project separately. Although 92% would allow academic researchers to use study data, 80% and 75%, respectively, would grant access to government and industry researchers. Concern about privacy was related to lower willingness to participate only when respondents were told that they would receive $50 for participation and would not receive individual research results back. Among respondents who were told that they would receive $200 or individual research results, privacy concerns were not related to willingness. Survey respondents valued both privacy and participation in biomedical research. Despite pervasive privacy concerns, 60% would participate in a biobank. Assuring research participants that their privacy will be protected to the best of researchers' abilities may increase participants' acceptance of consent for broad research uses of biobank data by a wide range of researchers.