title: The return of results of deceased research participants.
abstract: The death of a research participant raises numerous ethical and legal issues regarding the return of research results to related family members. This question is particularly acute in the context of genetic research since the research results from an individual may be relevant to each of the biological relatives. This paper first investigates the ethical and legal frameworks governing the return of a deceased participant's individual research results to his or her related family members. Then, it weighs the rights and interests of both the deceased individual and related family members in an attempt to identify key ethical considerations underlying the return of such results. This analysis of international guidelines and national laws and regulations reveals that though the legal framework regarding privacy and confidentiality of clinical and research information is well established (albeit not homogenous), guidelines are generally absent in the post-mortem context. Nevertheless, a brief analysis of this issue through two ethical perspectives (principlism and consequentialism) allows us to identify six key elements to be taken into consideration when returning a deceased participant's research results.
authors.affiliation: Centre for Genomics and Policy at McGill University, Canada.
authors.forename: Anne Marie
authors.initials: AM
authors.lastname: Tassé
mesh_terms: D003643:Death; D030881:Disclosure / Q000941:ethics* / Q000331:legislation & jurisprudence; D005190:Family; D036281:Genetic Research; D005820:Genetic Testing; D017408:Guidelines as Topic; D006801:Humans; D038622:Internationality; D035842:Research Subjects