Bernadette Richards

Perceptions of embryo status and embryo use in an Australian community

Increasingly, important areas of medical therapy and research rely on the donation and use of human embryos. Yet their use is commonly determined by community tolerance and ethico-legal regulation. The aim of this study was to explore the views of an Australian community about what an embryo is, how it should be used and who should make disposition decisions. The findings of a large representative population survey showed that most participants thought of an embryo as human or potentially human but that this did not affect a majority community view that embryos should be used rather than discarded. This study also found divergent views about what the community perceived to be acceptable uses of embryos. The majority perceived the couple as having the authority to make a disposition decision. Women held different views to men across all three questions. The way an embryo was perceived related significantly to how it should be used and who should decide its disposition. These differences and relationships should be considered when developing clinic practices and ethico-legal frameworks to regulate embryo use in science or treatment.

Regulating Consent to Organ and Embryo Donation

As rational adults, we are free to elect what is (or is not) done to our bodies. However, this strong freedom does not extend to the borders of life. Control over the uses of our biological material is constrained and uncertain at law. Our article examines the legal condition of embryos and organs: how law conceptualises them and regulates their uses.

The Medical Innovation Bill: Still more harm than good

The Medical Innovation Bill continues its journey through Parliament. On 23 January 2015, it was debated for the final time in the House of Lords and with one final amendment, the House moved to support the Bill, which then moved to the House of Commons on 26 January. It will be debated again on 27 February 2015. The Bill’s purpose is to encourage responsible innovation in medical treatment. Although this goal is laudable, it is argued that the Bill is unnecessary and has the potential to undermine the very cause it aims to advance. More useful for encouraging responsible innovation is the continued education of health-care professionals on how the law already supports practitioners who look to improve care through responsible innovation.

Considering Professional Misconduct and Best Interests of a Child (Palliative Orders)

Introduction A recent decision of the ACT Civil and Administrative Tribunal is worthy of a brief discussion because it helps to define the parameters of professionalism and endorses the significance of responsible conduct of research. In Australia the different State Medical Boards are now combined under a central body, Australian Health Practitioner Regulation Agency (AHPRA) which was established through a National Act (Health Practitioner Regulation National Law) in 2010. Under the National Act, an appropriate Board or Tribunal may determine that a health practitioner has acted in a manner that constitutes unsatisfactory professional performance, unprofessional conduct, or professional misconduct (s196) and each of these is of escalating severity. Professional misconduct is defined under the Act to include conduct that is

Decision-Making: At the End of Life and the Provision of Pretreatment Advice.

Despite a dearth of affirmative judicial or legislative guidance, it is generally accepted that a capacitated individual may legally and ethically hasten his or her death by voluntarily stopping eating and drinking (VSED) (Pope and Anderson 2011). In contrast, it is far more controversial whether an individual can VSED when s/he lacks capacity to do so contemporaneously (Menzel and Chandler-Cramer 2014). It remains unsettled whether an individual may use an advance directive or surrogate decisionmaker to restrain caregivers from offering food and fluids when s/he later reaches a pre-defined state of advanced dementia. Two new court decisions from the Canadian province of British Columbia are among the few in the world to address the legitimacy of advance VSED (Bentley v. Maplewood Seniors Care Society, 2014 BCSC 165; Bentley v. Maplewood Seniors Care Society, 2015 BCCA 91).

Assisted Dying in Australia and Limiting Court Involvement in Withdrawal of Nutrition and Hydration

In 1995 the Northern Territory passed the Rights of the Terminally Ill Act 1995 (NT) and in 1996 when it came into force, it was a world first and placed Australia at the forefront of legalized assisted dying. The Act was, however, rendered ineffectual by the Commonwealth in 1997 and since that time, euthanasia (assisted dying) has not been addressed by legislation in Australia. This recently changed in the State of Victoria with the passage of the Voluntary Assisted Dying Act 2017 on the 29th of November 2017. Given the complexities of some of the procedural requirements of the Act, it will not come into effect until June 2019. Under the Act, voluntary assisted dying means the administration of a voluntary assisted dying substance (defined as a substance specified in a permit for the purpose of causing death) and all steps reasonably related to such administration (s3). At this point in time there has been no specific substance identified and this will be determined at a later date. The complexities of legislating in this area are recognized in the inclusion of Bguiding principles^ in the Act which include (s5): that every human life has equal value and that autonomy should be respected. Support in making a decision is viewed as a right and the person must be informed about options available to them, including comfort and palliative care. Therefore, the Act reflects a position that assisted dying is not to be presented as the only available option and that patients need to be supported in identification of the most appropriate path for them. Further principles include open and clear communication, support for the patient, protection from abuse and, central to everything is the core principle of respect for culture, beliefs, values, and personal characteristics (s5(i)(j)). There are clear and specific procedural requirements including a first request, followed by a written declaration and a final request (s6). If these criteria are met then a voluntary assisted dying permit will be issued. The Act unambiguously protects any registered health practitioner who conscientiously objects to voluntary assisted dying and specifically authorizes refusal to participate in any aspect of the process. The eligibility criteria which some view as restrictive, are extensive and include a requirement that the person is eighteen or older and is an Australian citizen or permanent resident who ordinarily resides in Victoria (for at least one year). They must have capacity and be suffering from an Bioethical Inquiry (2018) 15:15–18 https://doi.org/10.1007/s11673-018-9839-8

Stretching the Boundaries of Parental Responsibility and New Legal Guidelines for Determination of Brain Death

A recent decision of the Family Court of Australia stretches the boundaries of parental authority and, arguably, fails to protect the interests of the child. At the outset of this discussion it is important to recognize the love and care that the parents of Carla (the child at the centre of this decision) have for her and their strong view that the treatment they are seeking is in her best interests. This overview in no way challenges that motive, rather it raises general questions regarding the broad legal principal that emerges from the decision. Five-year-old Carla was born genetically male but with a sexual development disorder (17 beta hydroxysteroid dehydrogenase 3 deficiency) which meant that she was Bunder virilised for a genetic male^ ([1]). Carla did not have any female reproductive organs but was born with the external appearance of a female and with male gonads not contained within a scrotum ([2]). After careful consultation with Carla’s doctors, her parents decided to Brear her as a female and to review that decision ... as she grew^ ([2]). Of note however is the decision, when Carla was three, for her to undergo surgery to Benhance the appearance of her genitalia^ ([2]). The case before the court was in response to an application by Carla’s parents for orders authorizing them to consent to further treatment including the removal of her male gonads and Bsuch further or other necessary and consequential procedures ... so that Carla can continue to live a healthy life as a female in the way that she identifies and is being raised^ ([3]). There are two points to note here, the first being the absence of any voice in the alternative, this application was seeking advice and approval for an already identified path. And the second is that there was a core assumption that Carla’s identification as a female was correct and there was no further evidence of the early decision to Breview that ... as she grew.^ The application to the court was unanimously supported by her parents and her treatment team and this summary is not challenging that support—the legal development of note here is the departure from the earlier decision of Barry J in Re Lesley (Special Medical Procedure) [2008] FamCA1226 which was described by Forrest J Bioethical Inquiry (2017) 14:323–328 DOI 10.1007/s11673-017-9803-z

Investigating Research and Accessing Reproductive Material

Dan Markingson was acutely psychotic when University of Minnesota psychiatrists enrolled him in 2004 into the local arm of a controversial multisite CAFE clinical trial, an AstraZeneca-sponsored comparative study of three of the newer neuroleptic drugs. He had been repeatedly judged incompetent to make his own treatment decisions—including as late as two days before enrolling in the study—and was involuntarily committed after making delusional threats to his mother. But his commitment was suspended by a “stay of commitment order” from a district court judge that allowed him to leave the hospital under court-imposed conditions, a key condition being that he had to follow the treatment instructions of his treating psychiatrist, Dr. Olson. Shortly after the stay of commitment order, Dr. Olson proposed that Markingson participate in the clinical trial (of which Olson was the lead investigator at the Minnesota site). Markingson was surprisingly assessed as competent to consent to participate in this trial. Seventeen days after his enrolment in the trial, he moved to a halfway house. His mother, Mary Weiss, believing his condition was deteriorating, attempted repeatedly to get her son out of the study. Notes from a social worker and an occupational therapist also suggested that he was not doing well while in the trial. At one point, Weiss explicitly warned the research team that her son was in serious danger of killing himself. Her warnings were ignored. On May 8, 2004, Markingson committed a violent suicide. These are, in short, the facts of a case that has created turmoil in the bioethics and research communities, particularly in North America, since the St. Paul, Minnesota, Pioneer Press reported on it in 2008 in a series of articles. That the case never completely faded away in the 5 years following the first media report and continues to be the focus of heated debate is due to ongoing actions by Mary Weiss and her friend, Mike Howard, as well as the relentless questioning and reporting by Carl Elliott, a University of Minnesota professor of bioethics. After Bioethical Inquiry (2014) 11:11–19 DOI 10.1007/s11673-013-9503-2

Professional conduct and making decisions for minors.

The regulatory framework of health care professionals in Australia was, until 2010, a matter of individual state and territory discretion. In 2006, the Council of Australian Governments (COAG) reached an agreement, and all jurisdictions began to move toward a national regulatory scheme (see ch 15 in White, McDonald, and Willmott 2010). This scheme is now a reality and some recent tribunal activity has provided valuable insight into the expectations of professional conduct (and misconduct) under the national scheme. These decisions are worth consideration, as they draw a distinction between unprofessional conduct and professional misconduct and provide guidance on the role of the professional boards and tribunals under the national scheme. In a recent decision of the Queensland Civil and Administrative Tribunal (QCAT), the definition of professional conduct and professional misconduct under the National Act was considered. Pharmacy Board of Australia v The Registrant [2012] QCAT 515 required the Tribunal to consider the actions of the registrant, a well-established pharmacist, with regards to the record-keeping and distribution of pseudoephedrine (PSE). PSE is a Schedule 3, Pharmacists only Poison under the Health (Drugs and Poisons) Regulation 1996 (Qld) ([13]) and is therefore subject to strict controls on the amount that is kept by the pharmacy at any one time (this was exceeded) and to specific requirements on the keeping of a register and reporting of access (neither of these was done appropriately). The registrant did not dispute any of this and accepted that he had not acted in an appropriate or professional manner. The point to be drawn from this decision is the discussion regarding what constitutes professional misconduct Bioethical Inquiry (2013) 10:11–15 DOI 10.1007/s11673-012-9410-y

Introducing the Internet to the Law School: Some Lessons from Adelaide

The world of education is shifting outside of the four walls of the traditional classroom and into the virtual world of the internet. Some view this shift with trepidation whilst others embrace it with an almost religious zeal. Neither of these extreme reactions is necessary. Web-based learning is neither the natural enemy of the traditional teacher nor the panacea to all that ails the traditional approach. It is simply an extra tool which, when used in combination with traditional methods, can result in a powerful teaching and learning experience. This paper explores the benefits and pitfalls of introducing the internet into the Law School curriculum. The experiences of the Adelaide University in the introduction and implementation of the internet provide a context for this exploration via a consideration of some of the lessons learnt.