Informed Consent for Genetics Research in Italy

P. Fedeli, N. Cannovo, Rosa Guarino, V. Graziano
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引用次数: 3

Abstract

Genetic research has become an indispensable instrument for medical research, and the subjects involved have both divergent and convergent interests.The possibility of having more detailed genetic information undoubtedly offers benefits for the health of the subject, but could also pose risks and make the subject vulnerable to discrimination.The scientific community has viewed very favorably the public health utility of family history, in which data from a family whose members suffer from chronic pathologies is collected and filed, in order to develop a sort of "stratification of family risk."Even though in the last decade the scientific and juridical literature has contributed greatly to the topic of biobanks, the perplexities that continue to surround this theme give the idea that current ethical protocols on research are inadequate.Genetic data must be used not to exploit, but to serve the person. Freedom and responsibility must be the twin guiding lights for establishing parameters for the use of biological samples. An evaluation of how this technology impacts the various aspects of the future of society is urgently needed.
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意大利遗传学研究的知情同意
基因研究已成为医学研究不可缺少的工具,涉及的学科既有不同的利益,也有共同的利益。获得更详细的遗传信息的可能性无疑对受试者的健康有益,但也可能带来风险,使受试者容易受到歧视。科学界非常看好家族史在公共卫生方面的效用,家族史收集了患有慢性疾病的家庭成员的数据,并将其归档,以形成一种“家庭风险分层”。尽管在过去的十年里,科学和司法文献对生物银行的主题做出了巨大的贡献,但围绕这一主题的困惑仍然使人们认为,目前的研究伦理协议是不充分的。基因数据不能用于开发,而必须用于为人服务。自由和责任必须成为确定生物样品使用参数的双重指路明灯。迫切需要评估这项技术如何影响未来社会的各个方面。
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