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Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information
  1. N Hallowell1,
  2. C Foster1,
  3. R Eeles2,
  4. A Ardern-Jones3,
  5. V Murday4,
  6. M Watson5
  1. 1The Institute of Cancer Research, London, UK
  2. 2Translational Cancer Genetics Team, Institute of Cancer Research and Royal Marsden NHS Trust, London, UK
  3. 3Cancer Genetics Clinic, The Royal Marsden NHS Trust, London, UK
  4. 4St George’s Hospital, London, UK
  5. 5Department of Psychological Medicine, Royal Marsden NHS Trust, London, UK
  1. Correspondence to:
 Dr N Hallowell, Department of Psychological Medicine, The Royal Marsden NHS Trust, Downs Road, Sutton, Surrey SM2 5PT, UK;
 ninah{at}icr.ac.uk

Abstract

Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information to kin raise different types of ethical issues. The implications of these findings for ethical debates about informed choice in the context of genetic testing are discussed.

  • BRCA1
  • 2 testing
  • mutation searching
  • care based ethics
  • qualitative study
  • informed consent
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