Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.
EUI San Joan de Deu, Barcelona, Spain.
Eur J Hum Genet. 2023 Dec;31(12):1393-1397. doi: 10.1038/s41431-023-01457-y. Epub 2023 Sep 13.
Important advances in genetics research have been made in recent years. Such advances have facilitated the availability of huge amounts of genetic information that could potentially be reused beyond the original purpose for which such information was obtained. Any such reuse must meet certain ethical criteria to ensure that the dignity, integrity, and autonomy of the individual from whom that information was obtained are protected. The aim of this paper is to reflect on these criteria through a critical analysis of the literature. To guarantee these values, ethical criteria need to be established in several respects. For instance, the question must be posed whether the information requires special attention and protection (so-called genetic exceptionalism). Another aspect to bear in mind is the most appropriate type of consent to be given by the person involved, on the one hand favouring research and the reuse of genetic information while on the other protecting the autonomy of that person. Finally, there is a need to determine what protection such reuse should have in order to avoid detrimental consequences and protect the rights of the individual. The main conclusions are that genetic information requires special care and protection (genetic exceptionalism) and that broad consent is the most practical and trustworthy type of consent for the reuse of genetic information.
近年来，遗传学研究取得了重要进展。这些进展使得大量的遗传信息得以获取，这些信息有可能在超出原始获取目的的情况下被重复利用。任何此类重复利用都必须符合一定的伦理标准，以确保从信息来源获得信息的个人的尊严、完整性和自主权得到保护。本文旨在通过对文献的批判性分析来反思这些标准。为了保证这些价值观，需要在几个方面建立伦理标准。例如，必须提出这样一个问题：信息是否需要特别关注和保护（所谓的遗传例外主义）。另一个需要考虑的方面是由相关人员提供的最合适的同意类型，一方面有利于研究和遗传信息的重复利用，另一方面又保护该人员的自主权。最后，有必要确定这种重复利用应该受到何种保护，以避免不利后果并保护个人的权利。主要结论是，遗传信息需要特别的关注和保护（遗传例外主义），而广泛的同意是重复利用遗传信息最实用和最值得信赖的同意类型。
