Dr Serene Ong1
1National University Of Singapore, Singapore
Biography:
Serene is a research fellow at the Centre for Biomedical Ethics. She is interested in ethical issues arising from emerging technologies, specifically genetic testing and familial disclosure, responsibility in healthcare, data sharing, precision medicine and AI. Serene also sits on the Southeast Asian Bioethics Network steering committee.
Abstract:
Genetic data has a dualistic nature. It is highly personal — each individual’s DNA is unique. However, parts of an individual’s genetic data are held in common with genetically-related family members. This can create ethical issues as these members may hold legitimate claims to the individual’s genetic data. This individual-shared duality of genetic information creates challenges in regulating and protecting genetic data. For instance, despite the individual’s consent, some family members may object to the collection and use of the individual’s genetic data for certain types of research. They may not wish to have the individual’s genetic test results documented in health records for fear of family history implications in insurance applications. It is unclear how we should treat the duality of genetic data, and balance the interests of the individual and others who might hold valid claims to the individual’s genetic information.
I start by considering genetic privacy, a concern that underpins much of the concerns surrounding access to and use of genetic data. I consider how the concept of privacy has evolved, and what this means for genetic information. Next, I look at genetic data itself. Not all genetic data has informational value; thus, it is important to distinguish the various types of genetic information. I propose a criterion based on utility, sensitivity, and relatedness, and I explain why a one-size-fits-all approach is unlikely to work. This criterion informs my differential approach to regulating how we collect, use and disclose genetic information.