Disclosure: Not One but a Series of Conversations and Actions

Ms Serene Ong1

1Centre for Biomedical Ethics, National University of Singapore, , Singapore

For hereditary diseases, early awareness of genetic risk can improve outcomes for family members at risk. While there are strong clinical, public health, and social reasons for disclosure to family, particularly for actionable diseases, there are also valid clinical and social reasons against disclosure. Examining these tensions is important because genetic tests are likely to play an expanding role in standard clinical care.

This presentation reports on preliminary findings from semi-structured interviews conducted in Singapore between March-June 2021, which aimed to examine how patients diagnosed with familial hypercholesterolemia inform their family, and how their decisions and practices are affected by familial relations. Familial hypercholesterolemia has been noted as a disease common enough to be a burden, but un-addressed by existing clinical care. Fourteen patients and family members were individually interviewed. I found that familial disclosure was not a singular event but a series of conversations and actions. Patients are situated in a network of social structures and relations, and particularly for close family members, patients’ actions are not hidden. Disclosure is therefore an ongoing series of events that often starts long before the actual genetic test. Further, disclosure is continued by reciprocal actions and even counter-disclosure from family members who indicate their interest and concern. Indeed, disclosure is a joint construction of a mutually desirable and ongoing outcome. The understanding of the complex trust relations in families can assist in steering practice guidelines regarding genetic testing and disclosure


Biography:

Serene Ong is a PhD candidate at the Centre for Biomedical Ethics, National University of Singapore. She is interested in ethical issues arising from emerging technologies such as genetic testing, precision medicine and AI, reading, and most things chocolate. Holding previous degrees in computational chemistry and bioinformatics, Serene takes an interdisciplinary approach to research. Her PhD research focuses on the disclosure of genetic risk information to family members.

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