Maps of beauty and disease: thoughts on genetics, confidentiality, and biological family

The author explores the ethics of decision-making and confidentiality in donor insemination through the narrative of her experience having two children with a sperm donor who was later discovered to carry a gene for a serious heart disease, hypertrophic cardiomyopathy. Contrasting individualist and communitarian ethical models, she questions understandings of confidentiality that hamper the construction of a medical family tree, especially when prognosis and treatment depend on the larger familial profile of the disease. She also emphasises that for the patient family the discovery of biological family through the lens of transmitted illness leads to a shift in family identity that goes beyond the purely medical.