Should we consider the costs of treatment of rare disorders: Is justice just a myth?

Isaacs D, Kilham H, Xafis V

Children’s Hospital at Westmead, Westmead NSW 2145 (david.isaacs@health.nsw.gov.au)

Justice and equity are important ethical principles in health care, but life is not fair. Children may rarely be born with severe health problems which are expensive to treat. The principle of equity could be interpreted as meaning we should not allow an ill child to be disadvantaged by the severity or rarity of their illness, even if their treatment is extremely costly, so we should pay whatever it costs. Alternatively, if the health budget is limited, equity might dictate that we should not spend excessive amounts on one child. In this talk we discuss how we ought to decide about expensive treatments for rare disorders.


Biography

David is a paediatric infectious disease specialist and general paediatrician from Sydney. He has been editor-in-chief of the Journal of Paediatrics & Child Health since 2009. In 2002, he and A/Prof Henry Kilham obtained post-graduate diplomas in bioethics from Monash University. Since then they have supervised medical students in bioethics research projects, taught post-graduate bioethics at the University of Sydney and published over 100 peer-reviewed articles on bioethics.

Is “gender disappointment” a mental disorder?

 

Tereza Hendl1, Tamara Kayali Browne2

1 Centre for Values, Ethics and the Law in Medicine, Medical Foundation Building, University of Sydney, NSW, 2006, Australia, Tereza.hendl@sydney.edu.au
2 Centre for Applied Philosophy and Public Ethics at Charles Sturt University, ACT, Australia, t.kayali.05@cantab.net

“Gender disappointment” is the feeling of sadness at the conception and/or birth of a child of the “wrong” sex. This feeling is experienced by parents who have a strong preference for a child of a particular gender and their desire is not realised. This article explores the phenomenon of gender disappointment that is increasingly being raised in the context of sex selection for social reasons and the parental drive to pursue it. Gender disappointment tends to be framed as a mental disorder in the media, on sex selection forums and among parents who have been interviewed about sex selection. Our aim is to investigate whether gender disappointment would qualify as a mental disorder under the current definition. We agree with Rashed and Bingham who call for attention to the origins of distress related to a particular “condition” and contend that if the distress is socially constituted, then it should not be considered a mental disorder. We argue that the distress related to gender disappointment is socially constituted, as the parent’s desire for a child of a particular gender is grounded in gender essentialism, a socially harmful set of beliefs which underlie sexism. It would therefore be wrong to state that the suffering within gender disappointment is the result of a mental disorder, or a dysfunction within the individual, which should be treated by sex selection. Rather, this suffering is the result of accepting sexist beliefs which are all too-prevalent within society. The solution is therefore not to permit sex selection, but to challenge gender essentialism.


Biography

Tereza Hendl completed a PhD in Philosophy at Macquarie University with a dissertation exploring ethical aspects of sex selection. She received the 2015 Max Charlesworth Prize. Currently, she works as a Postdoctoral Research Fellow at VELiM on a project focusing on the regulation of autologous stem cell therapies in Australia.

Dr Tamara Kayali Browne is a Research Officer at the Centre for Applied Philosophy and Public Ethics at Charles Sturt University. She was awarded her PhD from Cambridge University in 2012.

Her research focuses on the ethics and philosophy of reproductive technology and mental illness.

Ethical governance of biobanking and genomic research

A/Professor Andrew Crowden1, Professor John Devereux2, Dr Julian Lamont.3

1 School of Historical and Philosophical Inquiry, University of Queensland, St Lucia, Qld 4072, Australia.
2.T.C. Beirne School of Law, University of Queensland, St Lucia, Qld 4072, Australia.
3 School of Historical and Philosophical Inquiry, University of Queensland, St Lucia, Qld 4072, Australia.

This presentation is a summary of a discussion paper that was written as part of the University of Queensland Genomics in Society: Policy and Ethics Project. The current state of ethical and legal governance of biobanking and genomic research was audited, reviewed and analysed in response to a research question that asked if Australia’s existing institutional and regulatory arrangements are sufficiently robust and flexible to account for the uncertainties and risks posed by public health genomics?  Relevant documents, frameworks, guidelines, and statements that influence and guide the ethical and legal governance of biobanks and genomic research were identified and examined. The review discovered how biobanking governance and policy has been, and is, articulated across different jurisdictions and policy categories, with reference to international, national, state and territory, and local health service levels. The project included consideration of culturally appropriate guidelines developed by Indigenous peoples, including Maori and Aboriginal and Torres Strait Islanders.  A clear picture of the biobank governance policy environment in Australia will be outlined and a preferred practical ethical governance framework will be identified and defended.


Biography

A/Prof Andrew Crowden is at the School of Historical and Philosophical Inquiry, University of Queensland.

Patient-targeted Googling and social media: A cohort study of senior medical students in New Zealand

Aaron N. Chester1, Susan E. Walthert2, MBChB, Stephen J. Gallagher3, Ph.D., Lynley C. Anderson4, Ph.D., Michael L. Stitely2, M.D.

1Otago School of Medicine, University of Otago, Dunedin.
2Department of Women’s and Children’s Health, Dunedin School of Medicine, University of Otago, Dunedin.
3Dean’s Department, Dunedin School of Medicine, University of Otago, Dunedin.
4Bioethics Centre, Division of Health Sciences, University of Otago, Dunedin.

Social media and Internet technologies present several emerging and ill-explored issues for a modern healthcare workforce. One issue is patient-targeted Googling (PTG), which involves healthcare professionals using social networking sites (SNS) or publicly available search engines to collect patient information. The aim of this study was to address a deficit in data and knowledge regarding PTG; as well as medical student use of SNS commonly associated with PTG.

The authors surveyed final-year students at the University of Otago Dunedin School of Medicine in January 2016. A subset completed focus groups and findings were analysed using thematic analysis.

Fifty-four students completed the survey (response rate = 65.1%). The findings indicated that PTG was uncommon (n=9, 16.7%). Attitudes were varied and context dependent. Most participants identified problems with PTG (n=36, 66.7%), favouring more explicit guidance on this issue (n=29, 53.7%). A majority viewed PTG as inappropriate for routine matters (n=47, 87.0%). Levels of SNS usage were high (n=51, 94.4%); with participants concerned that patients and future employers could view the content of their SNS profiles (n=19, 35.2%).

Many participants were concerned that PTG could retrieve misleading information that altered the professional’s perception of the patient, potentially harming their relationship. Healthcare professionals should consider the potential ethical issues raised by PTG in advance of their search. Concern was also expressed that PTG could blur personal-professional boundaries between doctor and patient. Similarly, blurred personal-professional boundaries were of concern for many students using SNS where the student’s personal life could be accessed by patients and employers, thereby negatively affecting their perception of the emerging professional.


Biography

Aaron Chester is a medical student with the Otago School of Medicine in Dunedin, New Zealand. Finishing his third year of medicine, Aaron has directed his research interests towards the ethics of emerging technologies within New Zealand healthcare systems and educational curricula.

About the Association

The Australasian Association of Bioethics and Health Law (AABHL) was formed in 2009.

It encourages open discussion and debate on a range of bioethical issues, providing a place where people can ask difficult questions about ideas and practices associated with health and illness, biomedical research and human values.

The AABHL seeks to foster a distinctive Australasian voice in bioethics, and provide opportunities for international engagement through its membership, journal and conferences.

Members come from all the contributing humanities, social science and science disciplines that make up contemporary bioethics.

Many members have cross-disciplinary interests and all seek to broaden the dialogues in which all members of the wider community ultimately have an interest.

The AABHL is a supportive, creative and challenging community that provides a rich source of continuing academic refreshment and renewal.

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