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Choosing Between Possible Lives: Legal and Ethical Issues in Prenatal and Preimplantation Genetic Diagnosis

在可能的生命之间进行选择：产前和植入前基因诊断的法律和伦理问题

基本信息

批准号：
AH/E505074/1
负责人：
Rosamund Scott
金额：
$ 3.46万
依托单位：
King's College London
依托单位国家：
英国
项目类别：
Research Grant
财政年份：
2007
资助国家：
英国
起止时间：
2007 至无数据
项目状态：
已结题

来源：
https://gtr.ukri.org/projects?ref=AH%2FE505074%2F1
关键词：
Choosing Between Possible Lives Legal

项目摘要

The unfortunate phrase "designer baby" has become familiar to debates surrounding reproduction. As a reference to current possibilities the term is misleading, but the phrase indicates a societal concern of some kind about control and choice in the course of reproduction. People can choose to reproduce. They also have an interest in choosing, to some extent, the conditions under which they do so. However, it is always difficult and controversial to delineate the moral and legal scope of this interest. This is the central task of this research.Developments in the scope of prenatal genetic screening are now testing the limits of our ethical and legal conceptions of prenatal selection practices and put the issue high on the agenda of legal and ethical issues in reproduction for doctors, ethicists, lawyers and policy-makers. This research examines ethical, legal and public policy issues in prenatal diagnosis (PND) and pre implantation genetic diagnosis (PGD). It analyses the ethics of selection practices and explores the ability of current ethical guidelines and legal mechanisms to deal with genetic advances in these areas. The law has a key role to play in this area, if a limited one, so that the role of ethical guidelines is also crucial.The central theme of the research concerns the appropriate ethical and legal extent of reproductive autonomy in PND and PGD, thus: to what extent should a woman or couple be able to choose the kind of child to which they give birth? The research also examines how reproductive autonomy works in practice. The analysis further considers the interests of people with disabilities in these practices and whether these should be accommodated in prenatal selection practices. The resulting book should be the first monograph to approach both these topics from a dual ethical and legal perspective.As regards PND, the research analyses ethical arguments as to how extensive reproductive autonomy should be and thus how much choice, for instance, about the severity of a condition in a possible child should be offered to prospective parents through screening, testing and abortion. The legal discussion analyses and critiques the current locus and extent of decision-making authority as regards the disabled fetus, with reference to the law on abortion and the law relating to the negligent non-disclosure of information about the developing fetus.The appropriate extent of reproductive autonomy is also central to an analysis of PGD. Here there is concern about the degree to which we should permit negative testing and selection against disabilities at the embryonic stage. Currently this is closely regulated in England such that the legal criteria for PGD are broadly the same as those for selective abortion. There is also concern about negative or positive selection in relation to marginal features (such as height or eye colour) or positive selection for significant features relating to health or intelligence, although there is a limit to what will ever be possible here. In this light, the research explores the appropriate ethical and legal extent of PGD.In England, the law governing these areas is not inherently rights-based, but the impact of the Human Rights Act 1998 inevitably raises questions about the proper scope of reproductive autonomy in these contexts. By contrast, the United States has long had a rights-based approach to these issues, but recently there have been calls for some form of regulation of techniques such as PGD. Whether we should move to a more rights-based approach to these issues, or should further develop recognition of autonomy within our predominantly regulated approach, is an important question. In addition to analysing aspects of the US approach to these issues, the research also considers that of our European counterparts.A central purpose of this research is to consider the implications for the development of law, public policy and ethical guidelines in this area.

不幸的是，“设计婴儿”这个词在围绕生殖的辩论中已经变得很熟悉了。作为对当前可能性的参考，这个词是误导性的，但这个短语表明了对繁殖过程中的控制和选择的某种社会关注。人们可以选择繁殖。在某种程度上，他们也有兴趣选择他们这样做的条件。然而，如何界定这一利益的道德和法律的范围，一直是一个困难和有争议的问题。这是这项研究的中心任务，产前遗传筛查范围的发展正在考验我们对产前选择做法的伦理和法律的概念的限度，并将这个问题放在医生、伦理学家、律师和政策制定者生殖方面的法律的和伦理问题的议程上。本研究探讨了产前诊断（PND）和植入前遗传学诊断（PGD）中的伦理、法律的和公共政策问题。它分析了选择做法的道德，并探讨了目前的道德准则和法律的机制处理这些领域的遗传进步的能力。法律在这一领域发挥了关键作用，如果一个有限的，所以道德准则的作用也是至关重要的。研究的中心主题涉及适当的道德和法律的程度的生育自主权在PND和PGD，因此：在多大程度上应该一个女人或夫妇能够选择的孩子，他们生下来的那种？这项研究还探讨了生殖自主权在实践中如何发挥作用。该分析进一步考虑了残疾人在这些做法中的利益，以及是否应该在产前选择做法中考虑这些利益。由此产生的书应该是第一个专著，从双重伦理和法律的perspectives.For产后抑郁症，研究分析了伦理争论，生殖自主权应该有多广泛，从而有多少选择，例如，在一个可能的孩子的病情的严重程度，应该提供给未来的父母通过筛选，测试和堕胎。法律的讨论分析和批评目前的地点和范围的决策权，就残疾胎儿，参考法律堕胎和法律有关的疏忽不披露信息的发展中的胎儿。适当程度的生育自主权也是中心的PGD分析。在这方面，人们关注的是，在胚胎阶段，我们应在多大程度上允许对残疾进行阴性测试和选择。目前，这在英国受到严格的管制，因此PGD的法律的标准与选择性堕胎的标准大致相同。人们还担心与边缘特征（如身高或眼睛颜色）有关的消极或积极选择，或与健康或智力有关的重要特征的积极选择，尽管这里可能的情况有限。在这种情况下，本研究探讨了适当的伦理和法律的程度PGD。在英格兰，这些领域的法律管辖的不是固有的权利为基础的，但1998年的人权法的影响不可避免地提出了问题，在这些情况下生殖自主权的适当范围。相比之下，美国长期以来一直对这些问题采取基于权利的方法，但最近有人呼吁对PGD等技术进行某种形式的监管。对于这些问题，我们是否应该采取一种更加以权利为基础的办法，还是应该在我们以管制为主的办法中进一步承认自主权，这是一个重要的问题。除了分析美国对这些问题的处理方法外，这项研究还考虑了我们的欧洲同行。这项研究的一个中心目的是考虑这一领域的法律，公共政策和道德准则的发展的影响。