Sonia Allan

Clinical, ethical and legal considerations in the treatment of newborns with non-ketotic hyperglycinaemia.

Non-ketotic hyperglycinaemia (NKH) is a devastating neurometabolic disorder leading, in its classical form, to early death or severe disability and poor quality of life in survivors. Affected neonates may need ventilatory support during a short period of respiratory depression. The transient dependence on ventilation dictates urgency in decision-making regarding withdrawal of therapy. The occurrence of patients with apparent transient forms of the disease, albeit rare, adds uncertainty to the prediction of clinical outcome and dictates that the current practice of withholding or withdrawing therapy in these neonates be reviewed. Both bioethics and law take the view that treatment decisions should be based on the best interests of the patient. The medical-ethics approach is based on the principles of non-maleficence, beneficence, autonomy and justice. The law relating to withholding or withdrawing life-sustaining treatment is complex and varies between jurisdictions. Physicians treating newborns with NKH need to provide families with accurate and complete information regarding the disease and the relative probability of possible outcomes of the neonatal presentation and to explore the extent to which family members are willing to take part in the decision making process. Cultural and religious attitudes, which may potentially clash with bioethical and juridical principles, need to be considered.

Disclosure and donor-conceived children

Sir, Guido Pennings’ views on favouring donor anonymity are well known. However we were very concerned at your decision to publish and then highlight his article Disclosure of donor conception, age of disclosure and the well-being of donor offspring (Pennings, 2017) which, in our view, fell significantly short of the academic rigour we expect of Human Reproduction and its peer review and editorial processes. The signatories to this letter come from the fields of academia, professional practice, parent/family/ donor-conceived support groups and donor registry services. The research evidence concerning the impact of disclosure and age of disclosure on donor-conceived people and their family members is very limited, both in terms of numbers and range of participants, numbers of research teams working in this field and methodologies used, including sampling across all studies. There are to date no large-scale studies. This was not made clear: more than this, Pennings considered that the evidence was in fact sufficient to make claims based on it, not least through disproportionately weighting selected studies and ones which used primarily parental reports (which form the bulk of existing studies) over those from donor-conceived individuals, which he claimed used biased samples. He went on to attribute morality (‘parents should disclose’) rather than knowledge as the reason Kovacs et al. (2015) and the Nuffield Report (2013) recommended disclosing. In doing so, he ignored Nuffield’s emphasis on adolescent psychological development as a key plank of their decision and Kovacs et al.’s attention to the Australian cultural context. With regard to the latter, Pennings instead chose to represent this approach as being so at odds with their findings as to question their motivation as researchers (‘One wonders why they have done the study in the first place’) rather than acknowledge its validity. Unlike Pennings, some of those he singled out for criticism thoughtfully discuss the complexity of measuring outcomes as evidenced by, for example, Freeman and Golombok (2012) when they said: ‘However, differences between disclosing and nondisclosing families cannot be directly attributed to parents’ disclosure decisions and may reflect other differences between these families’. Both for these reasons and because research evidence only forms one part of what informs theory, policy and practice in any field—and perhaps especially where human relationships are concerned—the basic premise of Pennings’ paper is in our view academically flawed. Pennings omitted any reference at all to human rights, despite this being a key influence on change in this field as shown in current legislative moves in Germany, and dismissed personal experiences when captured through the grey literature or professional experience. Finally, and importantly, Pennings ignored the actual and potential impact of recent rises in DNA testing, including direct-to-consumer DNA testing, on the ability to maintain secrecy about involvement in donor conception given the resulting increased likelihood of unplanned disclosure and its associated risks (risks which Pennings chose largely to ignore). This despite a paper by Harper et al. (2016) ‘The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation out of business being an earlier Human Reproduction ‘Editor’s Highlight’ in 2016. Pennings went on to make critical remarks about counsellors and psychologists, ironically without citing any evidence to substantiate his claims and in the process minimizing multi-disciplinary support for openness as evidenced though such professional bodies’ guidelines as the American Society of Reproductive Medicine, the British Fertility Society, and the Australian and New Zealand Infertility Counsellors Association (ANZICA). His suggestion that counsellors and psychologists should be training parents who do not wish to disclose to ‘build a coherent and easy to maintain story’ is especially troubling; it is one thing to be expected to respect parents’ decisions (which psychosocial professionals do, in our experience), it is entirely another to expect them to teach parents how to lie to their children. Of course academics have the right to prompt debate and discussion on such important topics as disclosure and anonymity and we strongly respect that right; our concern here is that this paper has not met the standards that we would have expected from Human Reproduction.

Public health law and public health policy

Public health law and public health policy are fundamental tools that assist states in the task of protecting people from threats to health, preventing disease, and striving for healthy populations. This paper examines their respective and joint roles in influencing health outcomes. It considers definitions and theories of ‘public health law’ and ‘public health policy’, explores the relationship between law and policy, and provides examples of public health law and policy as dual mechanisms for public health. The limits and bounds of the law as a public health tool are also discussed highlighting where policy may be more effective in achieving particular aims. Supranational and international public health law and policy is also considered, emphasizing the importance of laws and policies that transcend national domains. The important roles of bodies beyond government, including inter-governmental organizations, business, and civil society, are noted, recognizing all may influence and effect law, policy, and practice, and in turn, public health.

Recognition of Same-Sex Parenting in Australia: South Australia, the Final Frontier?

Every state and territory in Australia has legislation the object of which is to provide legal certainty regarding the status of children and their parents. Such legislation was introduced in all jurisdictions in the 1970s to address the stigmatisation of children born to women who were not married and to remove notions of ‘illegitimacy’. There have been significant social changes since the inception of these Acts. Forty years later it is now common place that Australian families come in all shapes and sizes. Children may be parented by their biological parent(s) or they may have adoptive parents, foster parents, or live in blended families. The people who parent them may be heterosexual or gay, lesbian, bisexual or transgender (‘GLBT’). They may be single, married, in heterosexual de facto or same-sex relationships. While the law has been slow to recognise legal parentage in some of these circumstances it is now the case that changes to laws in federal and most state/territory jurisdictions recognise and in some instances facilitate same-sex parenting. This article compares the law in South Australia, which is the only jurisdiction yet to recognise and/or facilitate any form of same-sex parenting other than foster care, with those Australian jurisdictions that do. It is timely as there is currently a parliamentary inquiry into same-sex parenting in South Australia, and a private members bill tabled in parliament concerning the recognition of lesbian co-parents of children born as a result of assisted reproductive treatment (‘ART’).