In clinical genetics, individual autonomy remains the dominant organising principle which shapes how information is disclosed, how consent is obtained, and who is considered ‘the patient’. Yet, genetic information is inherently familial: a test result for one person often has implications for biological relatives.
This paper argues for a relational approach to disclosure that reinterprets prevailing criteria for breaching confidentiality, such as identifiability, imminence, and utility, by recognising the structural features of genetic risk. The familial, probabilistic, and intergenerational natures of genetic risk challenge the assumptions underpinning dominant individual-centred approaches and demand we interpret disclosure criteria relationally.
Instead of positioning the duty of healthcare professionals to warn at-risk relatives as a deviation from patient confidentiality, adopting a relational framing from the outset recognises disclosure as integral to shared responsibility and familial care. This approach alleviates the moral burden placed on individual patients to inform relatives and allows healthcare professionals to navigate disclosure decisions in ways that reflect how genetic risk actually operates within families. While a relational approach requires careful attention to consent, responsibility, privacy, and family dynamics, it aligns more closely with the realities of genetic medicine and with relational values already present in many communities.
This paper considers whether such a shift should be implemented within Aotearoa, focusing on mechanisms and responsibilities that shape clinical genetics: clinical guidelines, family-mediated disclosure tools and professional responsibilities. An explicitly relational approach to these elements would better align clinical genetics with more collective understandings of self-determination and benefit, and of genes themselves.