Working with communities: Engaging the public about the ethics of and decision to pursue personal genomic testing

Dr Jacqueline  Savard1,2,3, Ms Chriselle  Hickerton4,5, Professor Brenda Wilson6, Professor Sylvia Metcalfe4,5, Ms Bronwyn Terrill3,7,8, Associate Professor Clara Gaff9, Associate Professor Kathleen  Gray5, Dr Anna  Middleton10, Associate Professor Ainsley Newson2

1Deakin University, Geelong , Australia, 2The University of Sydney, Sydney, Australia, 3Garvan Institute of Medical Research, Sydney, Australia, 4Murdoch Children’s Research Institute , Melbourne , Australia , 5The University of Melbourne, Melbourne, Australia , 6The University of Ottawa, Ottawa, Canada, 7The University of New South Wales, Sydney , Australia , 8Genome.One , Sydney , Australia , 9Melbourne Genomics Health Alliance , Melbourne, Australia , 10Society and Ethics Research, Connecting Science, Welcome Genome Campus, Cambridge, United Kingdom

Personal genomic testing (PGT) for multiple purposes is marketed to ostensibly healthy people.  Interest in these tests has significantly expanded in recent years.  In turn, access to tests and the reported results to consumers are blurring boundaries between medical, ‘wellness’ and ‘recreational’ genomic testing.

As part of our Genioz project, in 2017 we conducted nine public deliberative workshops Australia-wide, involving 129 participants with (n=23) and without (n=106) experience of testing. We aimed to explore non-expert perspectives on PGT. Drawing on earlier survey and interview data, we selected three categories of testing for exploration: ancestry (n=61), wellness (n=34), and children’s health and aptitudes (n=34).

Four stepwise, neutrally-framed information sets pertaining to key scientific and ethical issues in PGT, were presented with time for facilitated discussion over a 2.5hr period. Data were captured using a mixed methods approach. We report the results of: tracker questions from 5 time points in the workshops (including baseline); participant attitudes regarding information consumers should know about PGT; and a thematic analysis of discussions and written responses by participants.

Tracker question data during the workshops indicate that participants became less comfortable with, and more thoughtful about, pursuing testing. Discussions and written responses reflected this change, with participants identifying ethically complex issues (about consent, family communication and privacy) that aligned with information they rated as important to know when considering PGT.

This relatively brief deliberative methodology highlights a useful public engagement strategy focusing on the ethics of new technologies. This research and its findings demonstrate that bioethics need not be left behind in conversations around emerging issues in health care and research. Instead it can inform discussions across different stakeholder groups, contribute to policy and aid the development of relevant resources for other non-expert users, so they can critically reflect on their choices around new genomic technologies.


Biography:

Dr. Jacqueline Savard is a lecturer in health ethics and professionalism at Deakin University. Her research interests include the ethics of new genomic technologies, how genetic information is used in daily life and how these evolving ideas can be communicated and engaged with the public.

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.

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