Evolving public views on the value of one's DNA and expectations for genomic database governance: Results from a national survey
Evolving public views on the value of one's DNA and expectations for genomic database governance: Results from a national survey
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DOI：
10.1371/journal.pone.0229044
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发表时间：
2020-03-11
期刊：
影响因子：
3.7
通讯作者：
McCormick, Jennifer
中科院分区：
文献类型：
--
作者：
Briscoe, Forrest;Ajunwa, Ifeoma;McCormick, Jennifer
我们报告了一项关于基因组数据库治理的公众态度的大型调查结果。之前的调查集中在学术赞助的生物银行的背景下，将数据提供框定为利他捐赠;我们的调查旨在反映四个不断增长的趋势：基因组数据库在许多领域都有发现;它们不仅仅用于学术生物医学研究;它们的价值反映在企业交易中;以及其他相关的隐私风险正在显现。为了研究如何应对这些趋势的态度可能会演变，我们提供了调查受访者的信息，从主流媒体的报道。然后，我们发现只有11.7%的受访者愿意无私地捐赠他们的数据，而50.6%的受访者愿意在经济补偿的情况下提供数据，37.8%的受访者不愿意提供数据。由于提供一个人的基因组数据有时与收到个性化的基因组报告捆绑在一起，我们还询问了受访者他们愿意为个性化报告支付的价格。从提供数据的预期报酬（如果有的话）中减去该响应值，得到净预期报酬。对于利他主义捐赠者来说，净预期支付的中位数是-75美元（即他们预期为捆绑支付75美元）。然而，对于希望获得数据补偿的受访者，净预期付款中位数为+95美元（即他们预计将获得95美元）。当被问及不同的基因组数据库治理政策时，大多数受访者倾向于允许他们更多地控制数据的选项。特别是，他们赞成限制数据共享或重用的政策，除非个人特别授予许可。无论基因组数据库位于哪个部门，政策优惠也相对一致。这些研究结果共同提供了一个关于个人偏好的前瞻性窗口，对于所有类型的机构在大规模数据共享领域制定治理方法都是有用的。
We report results from a large survey of public attitudes regarding genomic database governance. Prior surveys focused on the context of academic-sponsored biobanks, framing data provision as altruistic donation; our survey is designed to reflect four growing trends: genomic databases are found across many sectors; they are used for more than academic biomedical research; their value is reflected in corporate transactions; and additional related privacy risks are coming to light. To examine how attitudes may evolve in response to these trends, we provided survey respondents with information from mainstream media coverage of them. We then found only 11.7% of respondents willing to altruistically donate their data, versus 50.6% willing to provide data if financially compensated, and 37.8% unwilling to provide data regardless of compensation. Because providing one's genomic data is sometimes bundled with receipt of a personalized genomic report, we also asked respondents what price they would be willing to pay for a personalized report. Subtracting that response value from one's expected compensation for providing data (if any) yields a net expected payment. For the altruistic donors, median net expected payment was -$75 (i.e. they expected to pay $75 for the bundle). For respondents wanting compensation for their data, however, median net expected payment was +$95 (i.e. they expected to receive $95). When asked about different genomic database governance policies, most respondents preferred options that allowed them more control over their data. In particular, they favored policies restricting data sharing or reuse unless permission is specifically granted by the individual. Policy preferences were also relatively consistent regardless of the sector in which the genomic database was located. Together these findings offer a forward-looking window on individual preferences that can be useful for institutions of all types as they develop governance approaches in this area of large-scale data sharing.