Selecting "saviour siblings": reconsidering the regulation in Australia of pre-implantation genetic diagnosis in conjunction with tissue typing

In recent years, pre-implantation genetic diagnosis (PGD) has been developed to enable the selection of a tissue type matched "saviour sibling" for a sick child. This article examines the current regulatory framework governing PGD in Australia. The availability of PGD in Australia to create a saviour sibling depends on the regulation of ART services by each State and Territory. The limitations on the use of PGD vary throughout Australia, according to the level of regulation of ART in each jurisdiction. This article considers the limitations on the use of PGD for tissue typing in Australia and argues that some of these should be removed for a more consistent national approach. In particular, the focus in ART legislation on the "paramount interests" of the child to be born is inappropriate for the application of tissue typing, which necessarily involves the interests of other family members.     

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.     

WHEN PARENTS CAN CHOOSE TO HAVE THE “PERFECT” CHILD: WHY FERTILITY CLINICS SHOULD BE REQUIRED TO REPORT PREIMPLANTATION GENETIC DIAGNOSIS DATA

Preimplantation Genetic Diagnosis (PGD) is a procedure used to screen embryos for certain genetic conditions before implantation via in vitro fertilization (IVF) so the desired embryos can be chosen for implantation. The procedure was originally used to prevent the birth of children with deadly genetic disorders, but it is now used for more controversial reasons, such as to select for sex. Limited information is available regarding how PGD is used in the United States and there are many ethical concerns surrounding the practice of PGD, most notably that it could lead to the creation of designer babies and eugenic practices. This Note proposes amending a federal act to require fertility clinics to report PGD data through an existing web‐based system. This data can then be used by policymakers to federally regulate PGD practices.     

Symbiotic relationships: saviour siblings, family rights and biomedicine

It is now possible to combine the use of preimplantation genetic diagnosis (PGD) and tissue matching to select an IVF embryo that will, after birth, be a compatible tissue donor for an existing individual. This article analyses the ethical issues and the regulatory frameworks that intersect around the creation of tissue compatible children.     

Reviewing regulation of assisted reproductive technology in New South Wales: the Assisted Reproductive Technology Act 2007 (NSW)

In November 2007, the Assisted Reproductive Technology Act 2007 (NSW) was passed to deal with a number of issues under the spectrum of reproductive technologies. The legislation was the outcome of a review conducted by the New South Wales Health Department and adopts a different approach to other Australian statutory regulation. This article considers the approach of the new legislation and whether there are some issues that require further consideration under the new regulatory regime. In particular, discussion is focused on the failure of the new legislation to address eligibility for reproductive treatments as well as the use of pre-implantation genetic diagnosis for the creation of tissue-matched children.     

Embryonal genetic diagnosis and reproductive freedom in assisted procreation]

This article analyses the repercussions that the Preimplantational Genetic Diagnosis (PGD) has in the bioethical as well as legal fields in relation with the so-called "reproductive freedom" of the couple. Besides analysing the legal situation of this technique in Spain as well as other surrounding States, the article studies the problems associated with some scenarios of PGD, such as the use in the selection of sex, for therapeutic purposes for third parties, in relation with diseases of a possible late onset, multifactorial or of a variable phenotype expression and for the selection of embryos affected by a disease or disability. All are based on real clinical cases.     

Prenatal diagnosis,genetics and reproductive decision-making

Recent developments in genetic science will potentially have a significant impact on reproductive decision-making by adding to the list of conditions which can be diagnosed through prenatal diagnosis. This article analyses the jurisdictional variations that exist in Australian abortion laws and examines the extent to which Australian abortion laws specifically provide for termination of pregnancy on the grounds of fetal disability. The article also examines the potential impact of pre-implantation genetic diagnosis on reproductive decision-making and considers the meaning of reproductive autonomy in the context of the new genetics.     

Human-nonhuman chimeras: a regulatory proposal on the blurring of species lines

The chimera of modern biotechnology is defined broadly as a single organism composed of a mixture of materials from two or more organisms possessing distinct genetic backgrounds. Unlike the United States, which does not regulate chimeras directly, Canada has responded to the unregulated pursuit of chimera technology by banning certain chimeras as part of comprehensive legislation designed to regulate human reproductive technologies. In 2004, the Canadian Parliament passed the Assisted Human Reproduction Act despite criticism urging greater legislative justification for the Act's provisions and modification to it statutory definitions. Because current regulatory mechanisms in the United States, including patent law and administrative oversight, fail to regulate chimera technology, the United States should enact new legislation, using Canada's legislation as a model, to prohibit embryonic chimeras and to regulate other human-nonhuman combinations. Unregulated biotechnology threatens to disrupt legal and social institutions; therefore, the United States must make a balanced effort now to protect the public interest.     

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.     

Jewish Perspectives on the Use of Preimplantation Genetic Diagnosis

This article presents an analysis of the ethical considerations raised by preimplantation genetic diagnosis (PGD) from a Jewish perspective. It weighs the Jewish imperatives to pursue good health against a number of harms that may follow from the expanded use of PGD technology, including increased medical risk to the mother, the destruction of embryos and possible emotional harm to the child born from this procedure. It pays special attention to the potential harms that may befall those in society who do not have access to PGD or who choose not to employ it.     

Preconception tort liability: recognizing a strict liability cause of action for DES grandchildren.

Over the past decade more than 1,000 "DES daughters" have filed lawsuits against the manufacturers of DES, alleging that their in utero exposure to the drug caused various reproductive tract abnormalities, including cancer. Plaintiffs now allege that their grandmothers' use of DES during pregnancy caused genetic damage leading to cancer in third generations. This Note addresses the validity of preconception tort liability in the context of third-generation DES cases. Plaintiffs in preconception tort liability cases have sought recovery under both negligence and strict liability causes of action. Courts should recognize the validity of preconception tort liability and allow a strict liability cause of action in third-generation cases.     

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.     

Genetic technologies and the regulation of reproductive decision-making in Australia

This article provides a critical analysis of the current Australian regulatory landscape at the interface between genetics and reproductive decision-making. The authors argue that a comparative analysis with other countries and international law and a contextual examination of the way law regulates concepts such as disease and health, abnormality and normality is necessary before we can develop appropriate policy and legislative responses in this area. Specific genetic testing technologies are considered including prenatal genetic testing, preimplantation genetic diagnosis and inheritable genetic modification. An increasing number of members of the Australian community are using genetic testing technologies when they decide to have a baby. The authors argue that as concepts of disease and health vary among members of the community and the potential to test for traits other than illness increases, a new tension arises between an ethic of individual choice and a role for government in regulating reproductive decision-making.     

PGD phenotyping in bloodstains, organ tissues, dental pulps and hair roots by isoelectric focusing

Polymorphism of PGD was investigated in bloodstains, organ tissues, dental pulps, hair roots and semen by isoelectric focusing. This technique provided much higher resolution of PGD isoenzymes than starch gel electrophoresis. Phenotyping was possible from bloodstains for 5 weeks, from organ tissues (except pancreas) for 1-3 weeks, from dental pulps for 2 weeks and from hair roots for 2 weeks when they were stored at room temperature. The method is simple, rapid, reliable and therefore useful in medicolegal individualization of bloodstains, organ tissues, teeth and hairs.     

死后人工生殖的民法问题研究——兼谈台湾地区人工生殖立法新趋向

死后人工生殖打破知情同意法则,违反人工生殖目的,危及子女最佳利益.未来人工生殖立法应在满足生育自由的同时,尊重人性尊严,关怀后代福祗.建议严禁死后取精,严禁死后人工生殖.     

Medical study: aspiring parents, genotypes and phenotypes: the unexamined myth of the perfect baby

Although many have argued that assisted reproductive technologies ("ARTs") attract those with a desire to genetically engineer their offspring, this claim has yet to be verified. To address this question, we surveyed three groups: the general public, people enrolling in an in vitro fertilization ("IVF") program, and pregnant couples. We asked subject which traits they would select in their children if it were possible to use a magic wand to do so and to value genetic relatedness. In our sample, the potential parents who were using ARTs were less likely to express a desire to select traits in their offspring than were the general public, and just as likely as the pregnant couples, Those using ARTs , however, place greater importance on having genetically related children than the others. Thus, the widely held view that reproductive technology is utilized by those most likely to favor genetic engineering is falsified by out findings.     

TWENTY‐FIRST CENTURY PINK OR BLUE: HOW SEX SELECTION TECHNOLOGY FACILITATES GENDERCIDE AND WHAT WE CAN DO ABOUT IT

In the midst of a genetic revolution in medicine, Assisted Reproductive Technology (ART) has become a well‐established technique to help infertile women achieve pregnancy. But many women are now turning to ART not just to circumvent infertility, but consciously to shape their families by determining the sex of their children. Many patriarchal cultures have a gender preference for males and to date have used technological advances in reproductive medicine to predetermine the sex of the child being born. Women have sought sex‐selective abortions, where the pregnancy was being terminated solely on the basis of the sex of the unborn fetus. The combination of ART advances and gender preference has led to the disappearance of at least 100 million girls from the world's population leading to a mass gendercide. This article examines the societal impact of unbalanced gender ratios and the need to regulate sex selection to avoid nations of bachelors.     

“完全代孕”的法律规制初探

“完全代孕”是一种帮助不孕者怀孕生子的有效方法和法律行为。我们应当理性认识和对待代孕问题，确认和保护“完全代孕”，禁止“局部代孕”和“捐胚代孕”。当务之急应尽快通过立法来确认“完全代孕”的性质、“完全代孕”协议的效力及其权利保护与救济等一系列问题，以满足人们享有和行使生育权的正当与合法需求。     

"Chartering" the limits of involuntary psychiatric treatment in Victoria: interpreting the Mental Health Act 1986 (Vic) in the age of the Charter of Human Rights and Responsibilities Act 2006 (Vic)

The Mental Health Act 1986 (Vic) allows for individuals with a serious mental illness to be treated on an involuntary basis either in a psychiatric hospital (on an involuntary treatment order) or in the community (on a community treatment order). The Act also establishes the Mental Health Review Board with the authority to review these orders within eight weeks of those orders being made and at least once every 12 months thereafter. This article analyses a recent decision of the board, Re Appeal of 09-085 [2009] VMHRB 1, in which the appellant challenged a decision of a psychiatrist to extend his community treatment order for a further 12 months. The appellant argued that aspects of his involuntary treatment under the Act amounted to "cruel, inhuman or degrading" treatment and therefore breached his right to freedom from "cruel, inhuman or degrading" treatment under s 10(b) of Victoria's recently enacted Charter of Human Rights and Responsibilities Act 2006 (Vic). Thus, the board was asked to consider whether the definition of "treatment" under the Act was compatible with the rights and freedoms enacted by the Charter. This was the first time that a Victorian court or tribunal had considered the impact of the Charter on involuntary psychiatric treatment. The decision was also a prelude to the Victorian Government's announcement that it would comprehensively review its mental health legislation, now the oldest in Australia. As this case highlights, in determining the future direction of mental health legislation and policy in Victoria, the Charter has been crucial.