Privacy: Confidentiality and Responsibility

Fiona M Robson, St James's University Hospital, Leeds, UK

Published online: July 2006

DOI: 10.1038/npg.els.0005192

There may be conflict between the right of an individual to retain their genetic privacy and the right of family members who have serious claims to that information for reasons of their own health. Complex issues can be behind these difficulties for patients and practitioners in the struggle to resolve such dilemmas.

Keywords: genetic privacy; confidentiality; family dynamics; grief; ethics

 References
    Baker A and Duncan SP (1985) Child Sexual abuse: a study of prevalence in Great Britain. Child Abuse and Neglect 9: 457–467.
    book Human Genetics Commission (2000) Whose Hands on Your Genes? London: Department of Health.
    book Human Genetics Commission (2001) Debating the Ethical Future of Human Genetics: First Annual Report of the Human Genetics Commission. London: Department of Health.
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 Further Reading
    book Abramsky L and Chapple J (eds.) (1994) Prenatal Diagnosis: The Human Side. London, UK: Chapman & Hall.
    book Darr A (1998) Genetics? What's it Got to Do with Me? London: Genetic Interest Group. [A resource pack for brothers, sisters and parents of people with a genetic disorder.]
    book Emery AEH and Pullen I (eds.) (1984) Psychological Aspects of Genetic Counselling. London, UK: Academic Press.
    book Evers-Kiebooms G, Fryns J, Cassiman J and Van Den Berge (1992) Psychosocial Aspects of Genetic Counselling. New York, NY: Wiley-Liss.
    book Harper P (1993) "Genetic counselling and society". Practical Genetic Counselling, part III, pp. 317–329. Oxford, UK: Butterworth-Heinemann.
    book Jones DG (1999) "Genetic dilemmas". Valuing People: Human Value in a World of Medical Technology. "chap. 8", pp. 128–153. Carlisle, UK: Paternoster Press.
    book Kelly PT (1977) Dealing with Dilemma: A Manual for Genetic Counsellors. New York, NY: Springer-Verlag.
    book Lenaghan J (1998) Brave New NHS? The Impact of the New Genetics on the Health Service. London: Institute for Public Policy Research.
    book Marteau T and Richards M (eds.) (1996) The Troubled Helix. Cambridge, UK: Cambridge University Press.
    book Murphy TF and Lappe MA (eds.) (1994) Justice and the Human Genome Project. London, UK: University of California Press.
    book Weatherall DJ (1991) The New Genetics and Clinical Practice. Oxford, UK: Oxford University Press.

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Article Title: Privacy: Confidentiality and Responsibility
 
How to Cite close
Robson, Fiona M(Jul 2006) Privacy: Confidentiality and Responsibility. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1038/npg.els.0005192]