Ethical Considerations in Biobanks: How a Public Health Ethics Perspective Sheds New Light on Old Controversies
Ethical Considerations in Biobanks: How a Public Health Ethics Perspective Sheds New Light on Old Controversies
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DOI：
10.1007/s10897-014-9781-9
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发表时间：
2015-06-01
影响因子：
1.9
通讯作者：
Longstaff, Holly
中科院分区：
文献类型：
--
作者：
Virani, Alice Hawkins;Longstaff, Holly
过去二十年来，生物样本库，即有或没有相关医疗数据的生物标本的集合，数量急剧增加。它们在确定罕见病和常见病的潜在机制方面的潜在能力，促进了它们在学术、医疗和私营部门的扩散。尽管公众对生物银行表示支持，但学术界、政府和公共领域的一些人也对生物银行的伦理、法律和社会（ELSI）影响表示了警告。这些问题包括与数据的隐私和机密性有关的问题；向参与者返回结果和附带发现；数据共享和样本二次利用；知情同意机制；标本所有权；以及利益分享（即分配研究产生的财务或其他资产）。随着越来越多的研究人员寻求生物银行之间的国家和跨境合作，这种担忧变得更加严重。本文概述了生物库文献中两个最具争议的主题——知情同意和个人研究结果或偶然发现的回报——并探讨了公共卫生伦理视角如何有助于揭示如何最好地处理和管理这些问题。这样做也证明了遗传咨询师在伦理上合适的生物库招募和管理策略的持续讨论中可以发挥的重要作用，以及在这些未解决的主题上确定正在进行的实证研究的重要领域。
Biobanks, collections of biospecimens with or without linked medical data, have increased dramatically in number in the last two decades. Their potential power to identify the underlying mechanisms of both rare and common disease has catalyzed their proliferation in the academic, medical, and private sectors. Despite demonstrated public support of biobanks, some within the academic, governmental, and public realms have also expressed cautions associated with the ethical, legal, and social (ELSI) implications of biobanks. These issues include concerns related to the privacy and confidentiality of data; return of results and incidental findings to participants; data sharing and secondary use of samples; informed consent mechanisms; ownership of specimens; and benefit sharing (i.e., the distribution of financial or other assets that result from the research). Such apprehensions become amplified as more researchers seek to pursue national and cross-border collaborations between biobanks. This paper provides an overview of two of the most contentious topics in biobank literature -informed consent and return of individual research results or incidental findings - and explores how a public health ethics lens may help to shed new light on how these issues may be best approached and managed. Doing so also demonstrates the important role that genetic counselors can play in the ongoing discussion of ethically appropriate biobank recruitment and management strategies, as well as identifies important areas of ongoing empirical research on these unresolved topics.