Privacy and Genetic Information


To what extent can genetic information be considered private and personal? What obligations and duties do we owe to those with whom we have close family and personal ties?

Keywords: privacy; confidentiality; duty; obligation; family


British Medical Association (1998) Human Genetics: Choice and Responsibility. Oxford, UK: Oxford University Press.

Buchanan A (1998) Ethical responsibilities of patients and clinical geneticists. Journal of Health Care Law and Policy 1(2): 391–420.

General Medical Council (2000) Confidentiality: Protecting and Providing Information, para 36. London, UK: General Medical Council.

House of Commons Science and Technology Committee (1995) Human Genetics: The Science and its Consequences, para 228. London, UK: HMSO.

Lehmann LS, Weeks JC, Klar N, Biener L and Garber JE (2000) Disclosure of familial genetic information: perceptions of the duty to inform. American Journal of Medicine 109(9): 705–711.

Meyer M (1992) Patients' duties. Journal of Medicine and Philosophy 17: 541–555.

Rhodes R (1998) Genetic links, family ties and social bonds: rights and responsibilities in the face of genetic knowledge. Journal of Medicine and Philosophy 3: 10–30.

Royal College of Physicians (1991) Ethical Issues in Clinical Genetics, para 4.10. London, UK: Royal College of Physicians.

Further Reading

Clarke AJ (1997) Challenges to genetic privacy, the control of personal genetic information. In: Harper PS and Clarke AJ (eds.) Genetics Society and Clinical Practice, pp. 149–164. Oxford, UK: Bios Scientific Publishers.

Richards M (1998) Families, kinship and genetics. In: Marteau T and Richards M (eds.) The Troubled Helix, pp. 249–273. Cambridge, UK: Cambridge University Press.

Sommerville A and English V (1999) Genetic privacy: orthodoxy or oxymoron? Journal of Medical Ethics 25: 144–150.

Sulmasy DP (2000) On warning families about genetic risk: the ghost of Tarasoff. American Journal of Medicine 1099: 738–739.

Tauer CA (2001) Personal privacy and the common good. Health Progress 822: 36–42.

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How to Cite close
English, Veronica, and Sommerville, Ann(Jul 2006) Privacy and Genetic Information. In: eLS. John Wiley & Sons Ltd, Chichester. [doi: 10.1038/npg.els.0005191]