Ethical Genetic Counselling Forum 30 th October, 2008, RBWH, Brisbane

1. Ethical Genetic Counselling Forum30th October, 2008, RBWH, Brisbane Dr Eleanor Milligan • Clinical Ethics Coordinator, Princess Alexandra Hospital, Brisbane. • Senior Lecturer, Medical Ethics and Professional Practice, School of Medicine, Griffith University. • eleanor_milligan@health.qld.gov.au • Ph- 0439 751 629

2. What are the current ethical practice standards ? What is ethics? Is it ….. “critical skills in logical philosophical reasoning in order to rationally resolve the individual cases of ethical conflict that arise in the clinical setting” (p2 of ASGC Code of Ethics)

3. Or, perhaps as Hoffmaster (2006, p. 43) suggests….. ‘Human beings are rational, but human beings also have bodies and because they have bodies, they are vulnerable. In fact vulnerability is an even more basic feature of our human constitution than rationality, because while all human beings are vulnerable, not all are rational or even possess the potential to become rational…………it is our very vulnerability that creates the need for morality.’ • Coming to terms with the personal/social/relational impact of illness can be a time of intense vulnerability. • It is a time of questioning one’s identity and future – the seismic shift from ‘well’ to ‘unwell’

4. What are the current ethical practice standards ? • In practical terms, as health practitioners what ethical response does such vulnerability in another person invite from us? • Does the description……“critical skills in logical philosophical reasoning in order to rationally resolve the individual cases of ethical conflict that arise in the clinical setting”capture the intention of your ethical response? • If not, do you need to articulate a different framework? One which acknowledges the shared vulnerability and fragility of human being, one founded on relationship and care?

5. What ethical problems commonly arise in practice? • NOT ABLE TO COMMENT……but offer some background thoughts for your consideration. • Medicine is a social practice – genetics, which is a branch of medicine, is also a social practice ……. • Inevitably, there are social prejudices inherent within social practices including the practice of genetics • These inherent prejudices prefigure which choices become available to patients and endorsed by physicians ie. Genetic knowledge is not NEUTRAL

6. What about ensuring ‘balanced’ information? Possible but…. • ‘the framing of information in favour of particular options, ensured compliance with the “right” choice’ .Stapleton et al (2002, p.641) • ‘ although there were some examples of excellent counselling, there were other examples of grossly inadequate or frankly misleading information being given’ Abramsky, Hall, Levitan, & Marteau, (2001, p.466).

7. Much genetic advice/education appears to be given by medical personnel with limited knowledge of genetics. • Less than 15% of practitioners provided accurate information on the characteristics of screening tests regarding Down syndrome, ‘the majority of health professionals in the present survey are not providing their patients with accurate information about screening in an age-specific manner’ (Tyzack and Wallace, 2003, p.220). • UK survey of the GP’s role in prenatal genetic counselling ….GPs displayed a ‘lack of confidence in providing basic prenatal genetic advice………..indirectly demonstrating a lack of confidence in providing prenatal advice about the risk of Downs Syndrome’ (Qureshi, Armstrong, & Modell, 2006, p.109)

8. What ethical insights might the humanities offer? • The medical condition is embedded in the human condition, not vice versa. • ‘Medicine being simultaneously the scientific and humanistic study of man cannot escape being based in an explicit or implicit philosophy of human nature’ (Pellegrino, 2003, p.10). • Thus, understandings of the human condition must lie the heart of developing an ethical practice framework. • “The resolution of moral issues demands more than the ability to marry moral theory with the facts” (Caplan, 1982, p.2).

9. What might this look like in practice? • Focus on an ethics of engagement • Human ‘predicaments’ not conflicts/dilemmas • Embedded in contexts of time and place • Sensibilities – open and attentive • Responsive to multi-layered vulnerability • Based on the above, developing an ethical framework of practice becomes a question of • “How ought we (relationally) respond?” Rather than • “What ought I (rationally) do?”