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Familial Communication of Research Results: A Need to Know?

Published online by Cambridge University Press:  01 January 2021

Lee Black  and
Kelly A. McClellan
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Extract

In recent years, the research participant’s family’s need, if not right, to know their disease risk has comprised a great deal of the genetic testing discourse. This most often arises in the context of clinical genetic tests for hereditary cancers, especially colorectal and breast cancer, and other genetic disorders where the presence of a genetic mutation greatly increases the likelihood of the disease’s manifestation (such as Huntington’s Disease). However, this discussion has not led to comprehensive or cohesive guidance for health care professionals or patients. Indeed, various governmental and professional bodies run the gamut of possibilities, from no disclosure to family without the consent of the patient, to recognition that genetic risk information is important enough to the family to allow exception to traditional notions of confidentiality.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 39 , Issue 4 , Winter 2011 , pp. 605 - 613
Copyright
Copyright © American Society of Law, Medicine and Ethics 2011

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