Choosing disability: preimplantation genetic diagnosis and negative enhancement

This article examines the unusual circumstance of what the author has tentatively termed "negative enhancement". This term is used to describe those instances where individuals seek to use preimplantation genetic diagnosis (PGD) to achieve outcomes that, commonly, are socially not preferred. In a recent survey by the Genetics and Public Policy Centre, it was found that 3% of IVF-PGD clinics in the United States reported having provided PGD to couples who seek to select an embryo for the presence of a particular disease or disability, such as deafness, in order that the child share the characteristic with the parents. The idea of "negative enhancement" is, therefore, both a paradox and a useful means to describe the hidden assumptions behind claims that enhancement technologies can only lead us in one direction -- towards a race of blond, blue-eyed, able-bodied, intellectually magnificent and athletically superior beings. In Australia there does appear to be a consensus that PGD should only be used to select against serious disability. This inevitably raises the question of how we define disability and who is best placed to make decisions about the kind of kin we want to create.     

Choosing between possible lives: legal and ethical issues in preimplantation genetic diagnosis

This article critically appraises the current legal scope of the principal applications of preimplantation genetic diagnosis (PGD). This relatively new technique, which is available to some parents undergoing in vitro fertilization (IVF) treatment, aims to ensure that a child is not born with a seemingly undesirable genetic condition. The question addressed here is whether there should be serious reasons to test for genetic conditions in embryos in order to be able to select between them. The Human Fertilisation and Embryology Authority and the Human Genetics Commission have decided that there should be such reasons by broadly aligning the criteria for PGD with those for selective abortion. This stance is critically explored, as are its implications for the possible use of PGD to select either against or for marginal features or for significant traits. The government is currently reviewing the legal scope and regulation of PGD.     

The Cagliari (Italy) Court authorizes the preimplantation genetic diagnosis]

Today, preimplantation genetic diagnosis (PGD) has been greatly accepted within the framework of positive law of many European countries. Nevertheless, in other countries, such as Italy, it is forbidden by law. The ruling of the Civil Court of Cagliari which has authorized its use to a Sardinian couple, has opened, in this way, a small crack to be able to asses possible modifications to the Italian regulation on this matter. This article analyses the ruling of the Civil Court of Cagliari (Italy) from an ethical and legal perspective. The criteria which is used to analyse the legitimacy or illegitimacy of the practice of PGD is analysed. That is, on reasons which could justify or not the transfer of embryos in vitro to the woman. With this objective in mind, the Italian and Spanish normative models which regulates this controversial subject are looked at. As a conclusion, a critical evaluation of the arguments presented is made.     

Pre-implantation genetic diagnosis, tissue typing and beyond: the legal implications of the Hashmi case

The legality of pre-implantation genetic diagnosis (PGD) has recently been confirmed by the Court of Appeal in the Hashmi case, based on a purposive construction of the statute. The court went on to declare tissue typing lawful and strained the wording of the statute in order to do so. The Hashmi case confirms that it would be lawful for the HFEA to license tissue typing in the absence of PGD. However, the HFEA only licenses tissue typing where PGD is also indicated, on the basis of a blanket application of the welfare of the child test set out in S 13 (5). This policy can be criticised. Firstly, a blanket approach to S 13 (5) is not appropriate. Secondly, the HFEA is applying the test too strictly when compared to the 'best interests' test which would govern the situation were an existing child to be a potential donor. Thirdly, by licensing tissue typing in the Hashmi case, where it was the primary reason for testing, the HFEA has undermined the argument that it can be justified only in cases where it is ancillary to PGD. These arguments, coupled with human rights arguments, based on Art 8 and Art 12, could be used to challenge the legitimacy of the HFEA's policy. The restriction on tissue typing to cases where PGD is also indicated is not ethically justified. It offers the same direct benefit to the embryo as PGD, namely selection for implantation. PGD does not cure the relevant condition so offers no additional benefit in a causative sense. Moreover, the Kantian injunction against treating people solely as means is not breached where the child will be wanted for its own sake, as well as for its potential as a cord blood donor.     

Regulating assisted reproductive technologies in Victoria: the impact of changing policy concerning the accessibility of in vitro fertilisation for preimplantation tissue-typing

On 1 January 2010, the Assisted Reproductive Treatment Act 2008 (Vic) came into force. The legislation was the outcome of a detailed review and consultation process undertaken by the Victorian Law Reform Commission. Arguably, the change to the regulatory framework represents a significant shift in policy compared to previous regulatory approaches on this topic in Victoria. This article considers the impact of the new legislation on eligibility for reproductive treatments, focusing on the accessibility of such services for the purpose of creating a "saviour sibling". It also highlights the impact of the Victorian regulatory body's decision to abolish its regulatory policies on preimplantation genetic diagnosis and preimplantation tissue-typing, concluding that the regulatory approach in relation to these latter issues is similar to other Australian jurisdictions where such practices are not addressed by a statutory framework.     

Preimplantation genetic diagnosis: current and future perspectives

Over the last 30 years prenatal diagnosis has been available to couples at genetic risk to determine the genetic health of a naturally conceived pregnancy. Prenatal diagnosis involves fetal cell sampling either by chorionic villous sampling at 10-12 weeks or by amniocentesis at 12-15 weeks gestation and testing for genetic disease. If the fetus is affected, termination of pregnancy is a difficult and emotional issue for the couple. The advent of assisted reproductive technologies (ARTs) and more recently preimplantation genetic diagnosis (PGD) now provides an alternative reproductive option that allows couples to commence a pregnancy knowing that their baby will not be affected with the indicated genetic condition. This article explores the option of PGD, its clinical application now and into the future and the current status of regulation and legislation. With recent changes to national legislation, scientists now have the opportunity to access affected PGD embryos donated by patients to establish disease-specific stem cells that may be useful models of human disease and a means to develop more effective therapies for treatment.     

Regulating hospital labor costs: a case study in the politics of state rate commissions

With the advent of various attempts to control hospital costs by direct state regulation, labor input costs have become a target of particular attention. This focus is due in part to the unique discretion administrators can exercise over labor factors, and in part to the large absolute part of hospital resources devoted to labor costs, conservatively estimated to be about 55 percent of total budget. This paper examines the impact of state efforts in prospectively setting rates on collective bargaining outcomes in the hospital sector. Specifically, bargaining in New York, Maryland and Connecticut is examined. The paper concludes that government attempts at controlling costs have, in all cases, required the regulatory bodies to consciously exert influence on the collective bargaining process. Further, while such attempts seem to be within the paradigm of multilateral bargaining, there are significant distinguishing features in the role hospital regulatory bodies play in the bargaining process. These variations from the multilateral paradigm may impede the long run ability of rate review efforts to control bargaining outcomes with respect to wages.     

Protecting genetic materials and genetic information: a case study of Guthrie Cards in Victoria

The authors are privileged to have been provided with correspondence about a dispute over the ongoing storage of genetic material (as Guthrie Cards) in Victoria. The correspondence details confusion over the roles of government and the private sector service provider in accounting for the storage, use and destruction of these stored genetic materials collected as part of a government public health program. The purpose in publishing this account is to highlight the present inadequacies in current practices and the ongoing potential for a crisis in the management of collected genetic materials through a lack of appropriate regulation, transparency and accountability. The article suggests measures to remedy some of the existing inadequacies in contractual arrangements and recommends that the government retain ownership and control of both the genetic materials and the derived information to ensure some accountability in the present legal environment.     

Regulating behaviours on the European Union internet,the case of spam versus cookies

This article examines the soft-law politics of regulating behaviours on the internet in the European Union (EU) context. It shows the struggles behind internet standards, and delegation of power to commercial actors, while looking at spam and web-cookies as a case study. This article argues that by creating a false division between private and public spaces on the internet, it was possible to legitimize certain practices over others, despite being similar. In this way, spam was categorized as unsolicited communication associated with private space, whereas web-cookies were categorized as wanted communication in public space. By influencing and lobbying EU legislation and Internet Engineering Task Force (IETF) technical standards, the advertising industry and tech companies simultaneously authorize and institutionalize their own practices and illegalize people’s ‘problematic’ behaviour and other advertising companies. In this way, EU legislation and internet standards create a naturalized discourse that institutionalizes the roles of different actors in the online market, while emphasizing the central role of commercial actors in creating, defining, managing and enforcing the online market. Thus, spam operates as a regulatory tool applied to any type of behaviour that can interfere with the functioning of the EU e-commerce.     

行政自由裁量权控制的四个模型——兼论中国行政自由裁量权控制模式的选择

自由裁量权是行政权的核心要素。根据控制主体、控制理念、控制制度和控制技术的不同,行政自由裁量权的控制可被归纳为四种模式:通过规则的命令控制模式,通过原则的指导控制模式,通过程序的竞争控制模式,通过监督的审查控制模式。控制自由裁量的核心目标,应当是将自由裁量的行使引向理性化。行政自由裁量失衡和滥用情形的复杂性,决定了单一控制技术无法现实地控制目标。因此,控制行政自由裁量的模式需要从单一控制模式转向复合控制模式。