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

围绕生育的争论中，“设计师设计的宝宝”这个令人遗憾的短语已经变得耳熟能详了。作为对当前可能性的引用，这个术语具有误导性，但这个短语表明了对生殖过程中的控制和选择的某种社会关切。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，划定这一利益的道德和法律范围始终是困难和有争议的。这是这项研究的中心任务。产前基因筛查领域的发展现在正在考验我们对产前选择做法的伦理和法律观念的局限性，并将这一问题置于医生、伦理学家、律师和政策制定者的生殖法律和伦理问题的重要议事日程上。这项研究考察了产前诊断(PND)和植入前遗传诊断(PGD)的伦理、法律和公共政策问题。它分析了选择做法的伦理，并探讨了当前伦理准则和法律机制处理这些领域遗传进步的能力。法律在这一领域发挥着关键作用，尽管作用有限，因此道德准则的作用也至关重要。研究的中心主题涉及PND和PGD生殖自主权的适当伦理和法律范围，因此：一名妇女或夫妇应该在多大程度上能够选择他们生育的孩子？这项研究还考察了生殖自主是如何在实践中发挥作用的。分析进一步考虑了残疾人在这些做法中的利益，以及是否应将这些利益纳入产前选择做法。这本书应该是第一本从伦理和法律的双重角度来探讨这两个主题的专著。关于PND，这项研究分析了伦理争论，比如应该在多大程度上扩大生殖自主权，从而应该通过筛查、测试和堕胎向未来的父母提供多大的选择，例如关于可能孩子的病情的严重程度。法律讨论参照堕胎法和有关疏忽不披露发育中胎儿信息的法律，分析和批评了目前关于残疾胎儿的决策权的地点和范围。适当程度的生殖自主也是分析PGD的核心。在这里，人们担心我们应该在多大程度上允许对处于胚胎阶段的残疾进行阴性测试和选择。目前，这在英格兰受到严格的监管，因此PGD的法律标准与选择性堕胎的法律标准大体相同。也有人担心与边缘特征(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，尽管这方面的可能性是有限的。在这方面，研究探讨了生殖健康的适当伦理和法律范围。在英国，管理这些领域的法律本身并不是以权利为基础的，但1998年《人权法》的影响不可避免地提出了在这些情况下生殖自主的适当范围的问题。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。我们是否应该在这些问题上采取更注重权利的方法，或者是否应该在我们以监管为主的方法中进一步发展对自主权的承认，这是一个重要的问题。除了分析美国在这些问题上的做法外，这项研究还考虑了我们欧洲同行的做法。这项研究的一个中心目的是考虑对这一领域的法律、公共政策和道德准则发展的影响。

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.