To Tell or Not to Tell: Te Ethics and Law of Disclosing Health-Related Genetic Information to Family Members

Abstract

Background. Genetic conditions and susceptibilities difer from other diseases and health-related risks. Genetic information is shared between blood relatives, and therefore a genetic fnding can have implications for the wider family. Objective. Te present study investigates people’s views on issues related to disclosing genetic information to relatives. Specifcally, the study assesses opinions in relation to two issues: 1) whether people have a moral obligation to share their genetic data with family members; and 2) whether healthcare providers should have a legal obligation to share such data when consent is withheld. Design. A public engagement event was held based on the real-life court case of ABC vs the UK National Health Service (NHS). Participants were provided with information in three phases: frst, about the case; then, with progressively more details of the case; and fnally, with other relevant information. Afer being given each portion of information, the participants were asked to disclose their views on the rights and responsibilities related to the sharing of this information. Results. Te results clearly demonstrate that people hold strong and polarized views regarding confdentiality, and the moral and legal duties to disclose genetic information to family members. Even when withholding information could have an adverse impact on the health and life choices of relatives, participants disagreed about the legal obligations for healthcare providers to disclose a person’s genetic information to those relatives. Conclusion. Te results suggest that the issues of privacy and disclosure of genetic information are complex and divisive

Keywords

• Genetics
• ethics
• public engagement
• patient confdentiality
• duty of care
• data access rights