RESUMEN

In Australia and the UK, commercialization and corporatization of assisted reproductive technologies have created a marketplace of clinics, products, and services. While this has arguably increased choice for patients, 'choice', shaped by commercial imperatives may not mean better-quality care. At present, regulation of clinics (including clinic-corporations) and clinicians focuses on the doctor-patient dyad and the clinic-consumer dyad. Scant attention has been paid to the conflicts between the clinic-corporation's duty to its shareholders and investors, the medical profession's duty to the corporations within which they practice, and the obligations of both clinicians and corporations to patients and to health systems. Frameworks of regulation based in corporate governance and business ethics, such as stakeholder models and 'corporate social responsibility', have well-recognized limits and may not translate well into healthcare settings. This means that existing governance frameworks may not meet the needs of patients or health systems. We argue for the development of novel regulatory approaches that more explicitly characterize the obligations that both corporations and clinicians in corporate environments have to patients and to society, and that promote fulfilment of these obligations. We consider mechanisms for application in the multi-jurisdictional setting of Australia, and the single jurisdictional settings of the UK.

RESUMEN

In recent years, concerns about the financial burdens of health care and growing recognition of the relevance of cost to decision making and patient experience have increasingly focused attention on financial 'transparency' and disclosure of costs to patients. In some jurisdictions, there have been calls not only for timely disclosure of costs information, but also for 'informed financial consent'. However, simply putting the 'financial' into 'informed consent' and invoking an informed consent standard for cost information encounters several ethical, legal, and practical difficulties. This article will examine the viability and desirability of 'informed financial consent', and whether it is possible to derive ideas from traditional informed consent that may improve decision making and the patient experience. We argue that, while there are important legal, ethical, and practical challenges to consider, some of the principles of informed consent to treatment can usefully guide financial communication. We also argue that, while medical practitioners (and their delegates) have an important role to play in bridging the gap between disclosure and enabling informed (financial) decision making, this must be part of a multi-faceted approach to financial communication that acknowledges the influence of non-clinical providers and other structural forces on discharging such obligations.

Asunto(s)

RESUMEN

Global social movements for justice have called for better legal responses to the harms of inequality. These inequalities have traditionally been dealt with in the political sphere and legal measures to address them have taken little account of emerging knowledge about the biological impact of unequal treatment. We use the concept 'bioinequalities' to foreground the relationship increasingly articulated in studies that show that social stress and trauma associated with unequal treatment have a significant epigenetic and intergenerational impact on the body. This article proposes a way to address the health harms that result from inequality by drawing on the existing concept of the 'hostile environment' in sexual harassment jurisprudence in Australia. Our 'bioinequality' approach focuses on the way that inequality operates in and as a hostile and harmful environment for the embodied and embedded beings that live in it. We examine the possibilities of using the concept of a hostile environment to more effectively address discriminatory harms alongside a positive duty to create non-hostile environments. In so doing we offer a broader, bioscientifically informed approach that can inform equality laws in other jurisdictions.

Asunto(s)

RESUMEN

In this article, we examine how disability is figured in the imaginaries that are given shape by the reproductive projects and parental desires facilitated by the bio-medical techniques and practices of assisted reproductive technologies (ARTs) that involve selection and screening for disability. We investigate how some users of ARTs understand and deploy these imaginaries in ways that are both concordant with and resistant to the understanding of disability embedded within the broader sociotechnical and social imaginaries. It is through users' deliberations, choices, responses, and expectations that we come to understand how these imaginaries are perpetuated and resisted, and how maintaining them is also dependent upon the individual actions and actors who have internalized them. Our examination is grounded in a close analysis of a small selection of interviews drawn from data gathered during a 4-year project funded by the Australian Research Council exploring the Australian experience of cross border reproductive treatment, looking particularly at surrogacy, and gamete and embryo donation. Our interviewees were individuals or couples who used gamete or embryo donation, coupled at times with surrogacy in attempting to have a child. Participants discussed their views on testing, screening, and future disability.

RESUMEN

OBJECTIVES: This study aims to provide an empirical examination of how complementary medicine practice in Australia is actually regulated under the current national registration model. METHODS: Data was obtained from Australian Health Practitioner Regulation Agency (AHPRA) Annual Reports for the years 2011/12-2014/15 and supplemented by the Chinese Medical Registration Board of Victoria (CMRBV) Annual Reports in 2011/12 for Chinese Medicine complaints. The data analysed includes complaint statistics, stage of closure of complaints and the outcome of complaints concerning Chinese medicine, chiropractic and osteopathy under the National Law. RESULTS: During 2014-2015 the number of complaints per 100 registrants for was highest for the medical board (4.4), while much lower for the chiropractic (1.5), osteopath (0.7) and Chinese medicine (0.5) boards. For conventional boards, 58% of complaints were closed at the assessment stage, while 57%, 29% and 16% of complaints to the osteopath, Chinese medicine and chiropractic boards respectively were closed at the assessment stage. The decision to suspend or cancel registration of health professionals was 17% from the Chinese medicine board, 14% from the Osteopathy Board, 1.5% from the chiropractor board and 0.6% from the medical board. CONCLUSION: It appears that complementary medicine practitioner regulation works at least as well as conventional regulation, and at most complementary medicine boards take a stricter interpretation of misconduct though more research would need to be undertaken to state this definitively. Our findings indicate that the public are using the statutory complaint mechanisms available to them with respect to the three CM groups.

Asunto(s)

RESUMEN

Drawing upon the preliminary findings of an Australian empirical project on cross-border reproduction (CBR), this article argues that regulators and policymakers could learn from the experiences of those who travel overseas in order to access fertility treatment and surrogacy. It makes four principal observations. First, the distinction between so-called 'altruistic' and 'commercial' gamete donation and surrogacy is increasingly unsustainable and is not experienced as meaningful by many participants in CBR. Secondly, the status of the law in CBR is profoundly equivocal; for participants it is often there and not there at the same time. Thirdly, self-sourced information, from the internet and more specifically social media such as Facebook, is now the principal source of information and peer support for reproductive travellers. Fourthly, and relatedly, domestic reproductive services providers are often sidestepped. If one of the goals of regulation is to minimise the risk of harm to participants, it is not clear that it is currently achieving this aim, and this article argues that any reforms will only work if they are more responsive to the reality of CBR.

Asunto(s)

RESUMEN

STUDY QUESTION: What is the impact of law and policy upon the experience of embryo donation for reproductive use? SUMMARY ANSWER: Access to, and experience of, embryo donation are influenced by a number of external factors including laws that impose embryo storage limits, those that frame counselling and approval requirements and allow for, or mandate, donor identity disclosure. WHAT IS KNOWN ALREADY: To date only three qualitative studies in Australia and New Zealand have been completed on the experience of embryo donation for reproductive purposes, each with a small cohort of interviewees and divergent findings. STUDY DESIGN, SIZE, DURATION: Embryo donors, recipients, and would-be donors were interviewed between July 2010 and July 2012, with three additional interviews between September 2015 and September 2016, on their experiences of embryo donation. The sampling protocol had the advantage of addressing donation practices across multiple clinical sites under distinct legal frameworks. PARTICIPANTS/MATERIALS, SETTINGS, METHODS: Participants were recruited from five Australian jurisdictions and across 11 clinical sites. Twenty-six participants were interviewed, comprising: 11 people who had donated embryos for the reproductive use of others (nine individuals and one couple), six recipients of donated embryos (four individuals and one couple) and nine individuals who had attempted to donate, or had a strong desire to donate, but had been prevented from doing so. In total, participants reported on 15 completed donation experiences; of which nine had resulted in offspring to the knowledge of the donor. MAIN RESULTS AND THE ROLE OF CHANCE: Donors positively desired donation and did not find the decision difficult. Neither donors nor recipients saw the donation process as akin to adoption . The process and practice of donation varied considerably across different jurisdictions and clinical sites. LIMITATIONS, REASONS FOR CAUTION: Because the pool of donors and recipients is small, caution must be exercised over drawing general conclusions. Saturation was not reached on themes of counselling models and future contact. WIDER IMPLICATIONS OF THE FINDINGS: The differences between our findings and those of a previous study are attributable to varied legal and counselling regimes. Therefore, law and policy governing embryo storage limits, counselling protocols and identity disclosure shape the donation experience and how it is described. STUDY FUNDING/COMPETING INTERESTS: This research was supported by Discovery Project Grants DP 0986213 and 15010157 from the Australian Research Council and additional funding from UTS: Law. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: Not applicable.

Asunto(s)

RESUMEN

The concept of "serious disability" appears to play a significant role in circumscribing treatment-limiting decisions in neonatal care, prenatal counselling, preimplantation genetic diagnosis, and abortion following prenatal diagnosis. However, there is no legal definition for this concept and its meaning varies among members of the community and the medical profession. Legal and policy responses to "serious disability" consist of an assortment of ethical guidelines, specific legislative frameworks and longstanding provisions of the criminal law, some of which were neither enacted nor developed with modern medical practices and dilemmas in mind. In addition, many of these regulatory frameworks and prohibitions vary between State and Territory jurisdictions. This leaves service providers, families wishing to utilise (or avoid utilising) diagnostic technologies and the broader community uncertain about the legal limits. This uncertainty has implications for women's autonomy in reproductive decision-making. For instance, services may be withheld, or their use encouraged, depending on differing understandings of the concept of "serious disability". The time has arrived for governments to consider whether it is appropriate to introduce a uniform set of guidelines and/or regulations across Australia for guiding clinical determinations of "serious disability".

Asunto(s)

Asunto(s)

RESUMEN

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.

Asunto(s)

RESUMEN

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.

Asunto(s)