title: Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.
abstract: OBJECTIVE
  The extent of the responsibility of health-care professionals (HCPs) to ensure that patients' relatives are told of their risk is unclear. Current international guidelines take confidentiality to the individual patient as the default position, but some suggest that disclosure could be default and genetic information could be conceptualized as familial.
  
  
  METHODS
  Our systematic review and synthesis of 17 studies explored the attitudes of HCPs, patients, and the public regarding the extent of HCPs' responsibility to relatives with respect to disclosure.
  
  
  RESULTS
  Health-care professionals generally felt a responsibility to patients' relatives but perceived a variety of reasons why it would be difficult to act on this responsibility. Public/patient views were more wide-ranging. Participants identified several competing and overlapping arguments for and against HCP disclosure: guidelines do not permit/mandate it, privacy, medical benefit, impact on family dynamics, quality of communication, and respecting autonomy.
  
  
  CONCLUSIONS
  We argue that HCPs can sometimes share genetic information without breaching confidentiality and that they could factor into their considerations the potential harm to family dynamics of nondisclosure. However, we need more nuanced research about their responsibilities to relatives, particularly as genomic tests are used more frequently in clinical practice.Genet Med 18 4, 290-301.
authors.affiliation: Clinical Ethics and Law, University of Southampton, Southampton, UK.
authors.forename: Sandi
authors.identifier: http://orcid.org/0000-0002-6412-696X
authors.initials: S
authors.lastname: Dheensa
authors.affiliation: Clinical Ethics and Law, University of Southampton, Southampton, UK.
authors.forename: Angela
authors.initials: A
authors.lastname: Fenwick
authors.affiliation: Clinical Ethics and Law, University of Southampton, Southampton, UK.|Wessex Clinical Genetics Service, University Hospitals Southampton NHS Foundation Trust, Southampton, UK.
authors.forename: Shiri
authors.initials: S
authors.lastname: Shkedi-Rafid
authors.affiliation: Clinical Ethics and Law, University of Southampton, Southampton, UK.|Wessex Clinical Genetics Service, University Hospitals Southampton NHS Foundation Trust, Southampton, UK.
authors.forename: Gillian
authors.initials: G
authors.lastname: Crawford
authors.affiliation: Clinical Ethics and Law, University of Southampton, Southampton, UK.|Wessex Clinical Genetics Service, University Hospitals Southampton NHS Foundation Trust, Southampton, UK.
authors.forename: Anneke
authors.identifier: http://orcid.org/0000-0003-3324-4338
authors.initials: A
authors.lastname: Lucassen
mesh_terms: D017007:Duty to Warn; D036262:Empirical Research; D004992:Ethics, Medical; D005190:Family; D005195:Family Relations; D005817:Genetic Counseling; D005826:Genetics, Medical; D006282:Health Personnel / Q000941:ethics; D006801:Humans; D011369:Professional-Patient Relations; D011795:Surveys and Questionnaires