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

Angus Clarke, Martin Richards, Lauren Kerzin-Storrar, Jane Halliday, Mary Anne Young, Sheila A Simpson, Katie Featherstone, Karen Forrest, Anneke Lucassen, Patrick J Morrison, Oliver W J Quarrell, Helen Stewart, Karen Forrest-Keenan

Research output: Contribution to journalArticle

91 Citations (Scopus)

Abstract

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

Original languageEnglish
Pages (from-to)556-562
Number of pages7
JournalEJHG : European journal of human genetics : the official journal of the European Society of Human Genetics.
Volume13
Issue number5
DOIs
Publication statusPublished - 1 May 2005

Keywords

  • attitude of health personnel
  • Australia
  • confidentiality
  • disclosure
  • family health
  • genetic counselling
  • Genetic Diseases, Inborn
  • Genetics, Medical
  • Great Britain
  • humans
  • prospective studies
  • risk factors
  • Huntingdons disease
  • ovarian cancer
  • relatives
  • communication
  • ethics
  • experience
  • breast

Cite this

Clarke, A., Richards, M., Kerzin-Storrar, L., Halliday, J., Young, M. A., Simpson, S. A., Featherstone, K., Forrest, K., Lucassen, A., Morrison, P. J., Quarrell, O. W. J., Stewart, H., & Forrest-Keenan, K. (2005). Genetic professionals' reports of nondisclosure of genetic risk information within families. EJHG : European journal of human genetics : the official journal of the European Society of Human Genetics. , 13(5), 556-562. https://doi.org/10.1038/sj.ejhg.5201394