Genetic Testing for Hereditary Disease: Attending to Relational Responsibility
Genetic Testing for Hereditary Disease: Attending to Relational Responsibility
复制标题
遗传性疾病基因检测：关注关系责任
DOI：
10.1086/jce200112403
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发表时间：
2001
期刊：
影响因子：
--
通讯作者：
L. d’Agincourt
中科院分区：
文献类型：
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作者：
M. Burgess;L. d’Agincourt
Proponents of genetic testing for hereditary disease have advanced this technology in the hopes that it will offer persons from families at risk of hereditary disease new choices for managing their health. For example, women found to carry a genetic mutation for breast cancer susceptibility may choose to engage in cancer surveillance or have prophylactic surgery, and those at risk for Huntington disease (HD) may find relief from anxiety or plan for reproduction or retirement. Guiding the use of this technology are traditional conceptions of autonomy (the right to self-determination or self-governance) and informed consent. In this article, we question the sufficiency of autonomy as the principal defining feature of personal motivations around genetic testing. Rather, we propose that relational responsibility (the experiences of responsibility in everyday life) plays a key role in people’s experiences regarding testing. Drawing on individual interviews and focus groups with persons undergoing genetic testing and their family members, we illustrate how decisions about genetic testing occur within complex social relationships that are embedded in and shaped by relational understandings of responsibility. We argue that the concept of relational responsibility captures dimensions of participants’ moral experiences that may be missed if ethical analysis is limited to assessing autonomy or weighing confidentiality against a duty to warn. This article is organized into three sections. The first section provides a brief review of mainstream and feminist approaches to autonomy in bioethics and then presents a broad outline of relational responsibility based on our own conceptualizations and the work of other feminist scholars. The second section refers to an empirical study that illustrates the role that relational responsibility plays in people’s decisions whether or not to seek genetic testing for HD and hereditary breast or ovarian cancer. The third section discusses the ethical relevance of this concept for genetic counseling.
