作者
Michael Arribas-Ayllon
发表日期
2011/12/1
来源
British medical bulletin
卷号
100
期号
1
页码范围
7
简介
Most clinicians will be aware that disclosing genetic risk is a complex issue. Unlike other kinds of medical testing, genetic testing not only reveals the risk to an individual, but it also reveals the risk to other family members. Disclosure is ‘complex’because the effects of genetic information may be wide ranging and unpredictable. In addition to the immediate or future consequences that information may have for an individual, a genetic test may reveal the risk to an offspring, it may have serious reproductive consequences for a family, the information may become a burden, it may lead to onerous obligations to disclose that risk to other relatives, and it may lead to stigma and discrimination. Research has shown that people can react to genetic information in very different ways, ranging from relief and resolution to denial and self-blame. 1–6 Furthermore, people’s understandings of genetic risk can change over time. 7 Since the 1970s, ethical frameworks have been established to guide professional practice and to protect individuals and families from the potentially harmful effects of receiving a genetic diagnosis. The application of ethical principles grew out of professional concerns about the social–ethical implications of the ‘new genetics’. To a large extent, these policies were developed with a particular disease in mind, the extreme nature of which served as a model for other kinds of genetic testing. Predictive testing of Huntington’s disease (HD) became the benchmark against which other kinds of genetic tests were evaluated. However, new evidence has come to light that suggests that Mendelian disorders may not be a suitable model with respect to …
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