Relatives' Right to Know Genetic Information in Aotearoa New Zealand.

Abstract

Once someone is diagnosed with a genetic abnormality or disorder, that information can be extremely valuable to their biological relatives. It may allow them to access preventive treatment or make informed decisions, such as whether to have a biological child or not. However, when the original family member refuses to disclose that information to at-risk relatives, a conflict arises between their right to patient confidentiality and their relatives' right to know. Aotearoa New Zealand lacks a specific, workable mechanism for disclosing genetic information to at-risk relatives. This article traverses the theoretical and practical issues involved in non-consensual disclosure of genetic information to suggest a new path for Aotearoa. It argues that the current, Western attitude of autonomy as an individual right free from obligations to others is no longer an appropriate justification for confidentiality over genetic information. Instead, patients diagnosed with a genetic abnormality or disorder should only be entitled to confidentiality where they have a reasonable expectation of privacy - determined by weighing the objective interests for and against disclosure. This approach recognises that we ought to consider our close relationships with others when we exercise autonomy over what is ultimately shared family information.