Genetic Information Access, a Legal Perspective: A Duty to Know or a Right Not to Know, and a Duty or Option to Warn?

It is often argued that concern with basic personal privacy suggests that individuals should be allowed to decide in isolation whether to obtain genetic information through testing and whether to make the results available to others. However, the familial nature of genetic information complicates matters by raising question regarding whether an individual has a moral duty to discover and/or reveal existing genetic information to possibly affected family members. Alternatively, if this information would harm family members, do individuals have a duty not to obtain, or at least not to divulge, genetic test results? What role, if any, should legislation play in dealing with access to genetic information at the familial level? Do health care professionals have a responsibility or a right to inform close family members of the genetic status of a related individual? We consider the personal, familial and public health care perspectives regarding this debate.

Keywords: genetic tests; privacy legislation; right not to know; duty to know; duty and privilege to warn

 References
    book Andrews LB (1997) "Gen-etiquette: genetic information, family relationships, and adoption". In: Mark A and Rothstein X (ed.) Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. New Haven: Yale University Press.
    Babul R, Adam S, Kremer B et al. (1993) Attitudes towards predictive testing for the Huntington's Disease gene. Journal of the American Medical Association 270: 2321–2325.
    Cox SM and McKellin W (1999) There's this thing in our family: predictive testing and the construction of risk for Huntington Disease. Sociology of Health and Illness 21(5): 622–646.
    book Lemmens T, Lacroix M and Mykitiuk R (2007) Reading the Future? Legal and Ethical Challenges of Predictive Genetic Testing. Montreal: Thémis. 308 pp.
    Machina M (1987) Choice under uncertainty: problems solved and unsolved. Journal of Economic Perspectives 1: 121–154.
    Meiser B and Dunn S (2000) Psychological impact of genetic testing for Huntington's Disease: an update of the literature. Journal of Neurosurgery and Psychiatry 69: 574–578.
    Parker M and Lucassen A (2004) Genetic information: a joint account? British Medical Journal 329: 165–167.
    Quaid KA and Morris M (1993) Reluctance to undergo predictive testing: the case of Huntington's Disease. American Journal of Medical Genetics 45: 41–45.
    Rabin M and Thaler RH (2001) Anomalies: risk aversion. Journal of Economic Perspectives 15(1): 219–232.
    book Rosenberg A (2000) "Privacy as a matter of taste and right". In: Paul EK, Miller Jr, FD and Paul J (eds) The Right to Privacy, pp. 1–24. Cambridge, MA: Cambridge University Press.
    book Wertz DC, Fletcher JC and Berg K (1995) Guidelines on Ethical Issues in medical Genetics and the provision of Genetic Services. Geneva: WHO.
 Further Reading
    Gold JL (2004) To warn or not to warn? Genetic information, families and physician liability. McGill Journal of Medicine 8(1): 72–78.
    ePath Luther L and Lemmens T (2007) Human Genetic Data Banks: From Consent to Commercialization – An Overview of Current Concerns and Conundrums, http://greenplanet.eolss.net/EolssLogn/searchdt.asp?cmd=getdoc&maxSize=200000&DocId=112&Index=D%3a%5cProgram%20Files%5cdtSearch%20Developer%5cUserData%5cC17&HitCount=12&hits=27+2a+3bd4+407e+4091+40c2+4443+4469+44bc+4510+45ae+45b1+&hc=12&req=Luther%2Band%2BLemmens
Contact Editor close
Submit a note to the editor about this article by filling in the form below.

* Required Field

How to Cite close
Lemmens, Trudo, Luther, Lori, and Hoy, Michael(Jul 2008) Genetic Information Access, a Legal Perspective: A Duty to Know or a Right Not to Know, and a Duty or Option to Warn?. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005188]