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J Community Genet. 2014 Oct;5(4):313-27. doi: 10.1007/s12687-014-0186-0. Epub 2014 Mar 25.
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Ethics. The bioethics commission on incidental findings.伦理。关于偶发发现的生物伦理委员会。
Science. 2013 Dec 13;342(6164):1321-3. doi: 10.1126/science.1248764.
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Unexpected findings in the exploration of African American underrepresentation in biospecimen collection and biobanks.在探索非裔美国人在生物样本采集和生物样本库中代表性不足问题时的意外发现。
J Cancer Educ. 2014 Sep;29(3):580-7. doi: 10.1007/s13187-013-0586-6.
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Genet Med. 2014 Jun;16(6):491-4. doi: 10.1038/gim.2013.175. Epub 2013 Nov 7.
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An effective multisource informed consent procedure for research and clinical practice: an observational study of patient understanding and awareness of their roles as research stakeholders in a cancer biobank.一种有效的多源知情同意程序，适用于研究和临床实践：一项观察性研究，调查患者对其作为癌症生物库研究利益相关者的角色的理解和认知。
BMC Med Ethics. 2013 Jul 30;14:30. doi: 10.1186/1472-6939-14-30.
7
Public preferences regarding informed consent models for participation in population-based genomic research.公众对参与基于人群的基因组研究的知情同意模式的偏好。
Genet Med. 2014 Jan;16(1):11-8. doi: 10.1038/gim.2013.59. Epub 2013 May 9.
8
Potential bias in the bank: what distinguishes refusers, nonresponders and participants in a clinic-based biobank?生物样本库中的潜在偏倚：在基于诊所的生物样本库中，拒绝者、无应答者和参与者有何不同？
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Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?基因组规模研究中的知情同意：潜在参与者怎么看？
AJOB Prim Res. 2012 Jul 1;3(3):3-11. doi: 10.1080/21507716.2012.662575. Epub 2012 Jun 19.
10
Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem?生物库研究中的广泛同意与动态同意：被动参与是一个伦理问题吗？
Eur J Hum Genet. 2013 Sep;21(9):897-902. doi: 10.1038/ejhg.2012.282. Epub 2013 Jan 9.

生物样本库研究中提供广义和狭义同意意愿的人口统计学差异。

Demographic differences in willingness to provide broad and narrow consent for biobank research.

作者信息

Ewing Altovise T, Erby Lori A H, Bollinger Juli, Tetteyfio Eva, Ricks-Santi Luisel J, Kaufman David

机构信息

1 Department of Health, Behavior, and Society, The Johns Hopkins University Bloomberg School of Public Health , Baltimore, Maryland.

出版信息

Biopreserv Biobank. 2015 Apr;13(2):98-106. doi: 10.1089/bio.2014.0032. Epub 2015 Mar 31.

DOI:10.1089/bio.2014.0032
PMID:25825819
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4574731/
Abstract

PURPOSE

This study examined acceptability of two biobank consent models and evaluated the impact of beliefs about privacy and genetic safeguards on acceptance.

METHODS

U.S. adults surveyed online in English and Spanish were randomly assigned to one of two scenarios examining acceptance of broad consent (n=1528), or narrow consent (n=1533).

RESULTS

Overall, willingness to provide broad (76%) and narrow (74%) consents were similar. African Americans were as likely as white non-Hispanics to accept narrow consent (72% vs. 77%, p=0.35) but significantly less likely to accept broad consent (69% vs. 81%, p=0.004). Education, insurance, and blood donation history were also related to acceptance. Adjusting for beliefs about privacy and policy protections (Genetic Information Nondiscrimination Act, GINA), the effects of the variables were reduced. Respondents who drew comfort from GINA were more likely to support both consent (both p<0.001); those who believed it is impossible to maintain privacy were less likely to find both broad (p=0.04) and narrow models acceptable (p=0.02).

CONCLUSIONS

Choice of consent model matters when engaging diverse populations in biobank research. Beliefs underlying concerns about privacy and genetic protections should be considered when constructing biobank protocols.

摘要

目的

本研究考察了两种生物样本库知情同意模型的可接受性，并评估了对隐私和基因保障措施的信念对接受程度的影响。

方法

通过在线调查以英语和西班牙语对美国成年人进行调查，他们被随机分配到两种情景之一，分别考察对广泛同意（n = 1528）或狭义同意（n = 1533）的接受情况。

结果

总体而言，提供广泛同意（76%）和狭义同意（74%）的意愿相似。非裔美国人接受狭义同意的可能性与非西班牙裔白人相似（72% 对 77%，p = 0.35），但接受广泛同意的可能性显著较低（69% 对 81%，p = 0.004）。教育程度、保险和献血史也与接受程度有关。在调整了对隐私和政策保护（《基因信息非歧视法案》，GINA）的信念后，这些变量的影响有所降低。从GINA中获得安慰的受访者更有可能支持两种同意方式（p均<0.001）；那些认为不可能保持隐私的人不太可能认为广泛（p = 0.04）和狭义模型都是可接受的（p = 0.02）。

结论

在生物样本库研究中让不同人群参与时，知情同意模型的选择很重要。在构建生物样本库方案时，应考虑对隐私和基因保护问题的潜在信念。