Brownsword Roger, Wale Jeff
King's College London, London, UK.
Bournemouth University, Poole, UK.
Asian Bioeth Rev. 2017;9(1):3-18. doi: 10.1007/s41649-017-0012-1. Epub 2017 Jul 13.
Prompted by developments in human genetics, a recurrent bioethical question concerns a person's 'right to know' and 'right not to know' about genetic information held that is intrinsically related to or linked to them. In this paper, we will revisit the claimed rights in relation to two particular test cases. One concerns the rights of the 500,000 participants in UK Biobank (UKB) whose biosamples, already having been genotyped, will now be exome sequenced, and the other concerns the rights of pregnant women (and their children) who undergo non-invasive prenatal testing (NIPT)-a simple blood test that can reveal genetic information about both a foetus and its mother. This two-part paper is in four principal sections. First, we sketch the relevant features of our two test cases. Secondly, we consider the significance of recent legal jurisprudence in the UK and Singapore. Thirdly, we consider how, the jurisprudence apart, the claimed rights might be grounded. Fourthly, we consider the limits on the rights. We conclude with some short remarks about the kind of genetically aware society that we might want to be and how far there is still an opportunity meaningfully to debate the claimed rights.
受人类遗传学发展的推动,一个反复出现的生物伦理问题涉及个人对于与其自身内在相关或有联系的基因信息的“知情权”和“不知情权”。在本文中,我们将结合两个特定的测试案例重新审视这些所谓的权利。一个案例涉及英国生物银行(UKB)的50万名参与者的权利,他们的生物样本已经进行了基因分型,现在将进行外显子组测序;另一个案例涉及接受无创产前检测(NIPT)的孕妇(及其子女)的权利,NIPT是一种简单的血液检测,可以揭示胎儿及其母亲的基因信息。这篇分为两部分的论文包括四个主要部分。首先,我们概述两个测试案例的相关特征。其次,我们考虑英国和新加坡近期法律判例的意义。第三,我们思考除了判例法之外,这些所谓的权利可能基于何种依据。第四,我们考虑权利的限制。我们最后简要谈谈我们可能想要成为的那种有基因意识的社会,以及在多大程度上仍然有机会对这些所谓的权利进行有意义的辩论。