Shinaman Aileen, Bain Lisa J, Shoulson Ira
University of Rochester Medical Center, Rochester, New York 14620, USA.
Am J Med Genet A. 2003 Aug 1;120A(4):589-93. doi: 10.1002/ajmg.a.20092.
At a symposium in June, 2002, biomedical researchers, clinicians, legal experts, policymakers, and representatives of the insurance industry and the advocacy community gathered to address issues of genetic privacy and discrimination; and to identify research, legal, and policy gaps needing to be filled. They concluded that over the next decade, as more genetic information becomes available and the public becomes more aware of individual risks, concerns about privacy and discrimination will become increasingly important. Documented cases of genetic discrimination are rare and largely anecdotal, yet individuals with genetic conditions harbor significant fears about discrimination. Current laws enacted to protect individuals from workplace and insurance discrimination offer some measure of protection, but leave many unfilled gaps. Moreover, the use of genetic information in potentially discriminatory ways is not limited to employment and insurability. Existing laws do little to protect people seeking life, disability, or long-term care insurance. And the courts have used genetic information in a wide variety of cases including paternity, criminal, and tort (personal injury) cases. Genetic information that might jeopardize an individual's right to privacy may also be obtained in the course of research studies, including through the collection of DNA and tissue samples. The insurance industry, State and Federal agencies, and the advocacy community are all making efforts to address some of these gaps through legislation and education of clinicians, the public, and policy makers.
2002年6月，生物医学研究人员、临床医生、法律专家、政策制定者以及保险业和倡导团体的代表齐聚一堂，共同探讨基因隐私和歧视问题，并找出需要填补的研究、法律和政策空白。他们得出结论，在未来十年里，随着更多基因信息的获取以及公众对个人风险的日益了解，对隐私和歧视的担忧将变得愈发重要。有记录的基因歧视案例很少，且大多只是传闻，但患有基因疾病的个人却对歧视怀有极大的恐惧。现行旨在保护个人免受职场和保险歧视的法律提供了一定程度的保护，但仍存在许多空白。此外，以潜在歧视性方式使用基因信息并不局限于就业和可保性方面。现行法律在保护寻求人寿、残疾或长期护理保险的人方面作用甚微。而且，法院在包括亲子鉴定、刑事和侵权（人身伤害）案件等各类案件中都使用了基因信息。在研究过程中，包括通过收集DNA和组织样本，也可能获取到可能危及个人隐私权的基因信息。保险业、州和联邦机构以及倡导团体都在努力通过对临床医生、公众和政策制定者进行立法和教育来填补其中一些空白。
