Who counts as family: A pluralistic account of family in the genetic context

• In Event: Inclusion and Its Consequences: The Politics of Diversity and Recognition in Health Data Projects - II

Abstract

Genetic testing is increasingly utilised as part of standard clinical care for patients with inheritable conditions. Notably, genetic information has unique aspects that present ethical challenges distinct from other types of medical information. Though generated in confidence to the patient, genetic test results are also of compelling interest to family members. However, disclosure relies on the patient revealing the information or consenting to the disclosure. The interests and preferences of family members may be excluded from consideration in decisions around disclosure, which may be unfair and lack justification. However, multiple understandings of family exist, which may result in misunderstandings and the exclusion of family that could have valid interests, particularly non-traditional forms not conventionally recognised as family. There is therefore a need to clarify who counts as family, and why. An understanding of who counts as family will have normative implications in clinical practice guidelines and policies regarding decisions surrounding genetic information, for instance in cascade screening. This paper reviews definitions of family relevant to the genetic context. Three aspects of family crucial in the genetic context are then discussed: biomedical, functional, and legal. Based on these aspects and a common limitation of existing definitions, I propose a pluralistic account of family that is inclusive and respectful of the various forms family can take.

Author

• Serene Ong