Bondy M, Mastromarino C
Department of Epidemiology, The University of Texas, M.D. Anderson Cancer Center, Houston 77030, USA.
Ann Epidemiol. 1997 Jul;7(5):363-6. doi: 10.1016/s1047-2797(97)00029-x.
To discuss and summarize the ethical controversies related to genetic testing and screening, and their effects on the research and other professional activities of epidemiologists.
We reviewed the literature and proposed legislation to discuss the controversies related to the ethical issues of genetic testing in epidemiologic research.
From a review of the literature and proposed legislation, we found these controversies may continue for some time and will probably add to the duties and difficulties of epidemiologists. It is important for the profession to respond to developments such as the proposed federal Genetic Confidentiality and Nondiscrimination Act of 1996 (Senate Bill 1898), which is summarized here; changes in research protocols and informed-consent forms as well as inclusion of other professionals from many disciplines will be necessary. In addition to revising training, and expanding their ethical code, epidemiologists should respond to public concerns about genetic information by disseminating knowledge about freedom to conduct clinical research, protection of the individual, and the limits of genetic information.
The possibility of genetic discrimination may complicate epidemiological research unless the public, employers, insurers, physicians, and researchers reach a consensus on the meaning of, and need for, genetic information. Although ethical concerns are appropriate, they will make accrual of study subjects and tissue samples more difficult.
探讨并总结与基因检测和筛查相关的伦理争议，以及它们对流行病学家研究和其他专业活动的影响。
我们查阅了文献并提出立法建议，以讨论流行病学研究中基因检测伦理问题相关的争议。
通过对文献的回顾和提出的立法建议，我们发现这些争议可能会持续一段时间，并可能增加流行病学家的职责和困难。该专业应对诸如1996年拟议的联邦《基因保密与非歧视法案》（参议院法案1898号）等发展情况做出回应，此处对其进行了总结；研究方案和知情同意书的变更以及纳入许多学科的其他专业人员将是必要的。除了修订培训内容和扩展伦理准则外，流行病学家还应通过传播有关开展临床研究的自由、个人保护以及基因信息局限性的知识，来回应公众对基因信息的关注。
除非公众、雇主、保险公司、医生和研究人员就基因信息的意义和需求达成共识，否则基因歧视的可能性可能会使流行病学研究复杂化。尽管伦理问题是合理的，但它们将使研究对象和组织样本的积累更加困难。
