Navigating ethics in Genetic Counselling
Analytic philosopher Dr Lisa Dive delves into the ethical minefield of Genetic Counselling.
Dr Lisa Dive is an analytic philosopher who has spent many years working in health and social policy in the non-profit sector. As a member of our UTS Genetic Counselling Curriculum Advisory Committee, she is working with the Graduate School of Health to develop and deliver ethics content for the Master of Genetic Counselling students.
We asked Lisa to tell us about her career and her fascination with the complexities of healthcare ethics.
As an analytic philosopher by training, I’m always interested in asking the “why” and “what do you mean by that?” questions. Despite leaving the field of analytic philosophy after completing my PhD nearly 15 years ago, I am still very much a philosopher in the way that I approach my work. After enjoying a doctorate in philosophy of mathematics, I wanted to pursue a career that made more of a practical difference in the world. I found a research role in a small non-profit organisation working in drug policy, and there began my fascination with health and social policy.
Over subsequent years, I worked in various roles in the non-profit sector and particularly in health policy, but became increasingly interested in the complex ethical issues that arise in healthcare. This led me to transition back to academic work, with a focus on examining conceptual issues and how they become more complex in the face of emerging medical technologies. My interest in the ethical issues around genomic medicine has led to some great opportunities, including contributing to the new Master of Genetic Counselling program at UTS.
Currently I’m working on developing integrated ethical content for the Master of Genetic Counselling. This involves both specific modules in some subjects that clearly require a focus on ethics, as well as contributing to the way ethical issues are framed more generally in the program.
Genetic counselling is an area of practice that gets into many rich areas of ethics. Ethics is all about the kinds of reasons that we give (explicitly or implicitly) for what we should do, or what we think is good or bad, or what we value. One of the important things that genetic counsellors do is help patients work out what is important to them, what they are hoping for, and so on. These questions really get at the big ethical question “what is a good life?” because some idea about what constitutes a good life is always in the background when you answer questions like that. This makes it important for genetic counsellors to have some idea about the landscape of ethics, so they can ask appropriate questions and help patients get the best outcome.
It is important for genetic counsellors to have some idea about the landscape of ethics, so they can ask appropriate questions and help patients get the best outcome.
An example of when an understanding of ethics might be useful is when navigating the complexities of family communication. Genetic counsellors frequently encounter situations where there are family secrets or stories that only some members of the family know about, and which can make the communication of information related to health for other members of the family more complex. Of course there are many skills and attributes required in such situations, but an understanding of ethics can help genetic counsellors focus conversations on the reasons why patients and family members might make different choices and have different preferences. Exploring the underlying values that matter to patients and their family members can be helpful both to inform decision-making, and also for finding common ground when there is conflict.
The practice of genetic counselling also has to navigate areas that are ethically contentious such as individual autonomy, paternalism, privacy and confidentiality. The fact that genetic and genomic testing is inextricably familial presents a challenge to the traditional individualistic focus of clinical ethics. An example of this is when an individual’s (presumed) right not to know their genetic information might conflict with a clinician’s duty to inform them of a risk factor, or the right of family members to be made aware of familial risk. Such a dilemma involves many contested concepts, and we aim to give students the tools they need to approach such ethical complexities with confidence.
Genetic counselling is a great example of where philosophical analysis and theory can be applied to real-world ethical dilemmas, and can make a practical difference to help clinicians navigate the ethical complexities they face. This is why I love teaching ethics to clinicians, and I’m looking forward to working with the first cohort in 2019.
Learn more about Genetic Counselling at the Graduate School of Health.