Genetic professionals' reports of nondisclosure of genetic risk information within families

摘要: Patients attending genetic clinics are often the main gatekeepers of information for other family members. There has been much debate about circumstances under which professionals may have an obligation, or be permitted, to pass on personal their clients but without consent We report findings from first prospective study investigating frequency with genetics become concerned failure such relatives. In all, 12 UK and two Australian regional services reported cases over months, including details actions taken by in response clients' disclose information. A total 65 nondisclosure were reported, representing <1% clinic consultations collaborating centres during period. These included 39 parents not passing full adult offspring, 22 where siblings relatives given four was withheld partners – former partners. Professionals reasons withholding as complex, more citing concern desire shield distress rather than poor relationships. most cases, took further steps persuade make a disclosure no instance did professional force client's consent.