Ethical Issues in Cancer Genetics: 1) Whose Information Is It?

Abstract

This article presents and discusses four clinical cases that exemplify the complexity of ethical dilemmas concerning the provider's obligation to disclose or withhold genetic information from patients. Case 1: What is the responsibility of the cancer genetics provider to ensure that a positive test results is shared with distant relatives? Case 2: To ensure that results go to at-risk relatives, do we have the right to ignore the wishes of the designated next-of-kin? Case 3: Do we have the right to reveal a familial BRCA1 mutation to a patient's relative, who is at 50% risk? Case 4: Do we have an obligation to reveal that a patient is not a blood relative and therefore, not at risk to have inherited a familial mutation? These cases form the basis for discussing the provider's dual obligations to keeping patient confidentiality and informing patients and families about risk (i.e. duty to warn). We also provide a summary of consensus points and additional discussion questions for each case.

Decision‐Making About Inherited Cancer Risk: Exploring Dimensions of Genetic Responsibility

“…While facilitating family communication about genetic risk is not currently a formal goal of genetic counseling (Biesecker and Peters 2001;McAllister et al 2007), some evidence suggests that at risk individuals value professional guidance and support in this matter (Gaff et al 2005). While genetic counselors may encourage people to contact their relatives and provide family letters to help them, the dissemination of family risk information is usually left to the test candidate (Schneider et al 2006).…”

Communicating genetic risk information within families: a review

“…Clinicians are ethically poised between the rights of the individual regarding their privacy in relation to medical information and the rights of the family to know about their genetic risk [42]. Genetic counsellors ask counsellees to obtain confidential medical information from their relatives, such as the nature of illnesses, and suggest that counsellees may wish to inform family members of their result and the availability of predictive genetic testing, and screening where available, if a mutation is identified.…”

How do healthcare professionals manage ethical challenges regarding information in healthcare professional/patient clinical interactions? A review of concept- or argument-based articles and case analyses

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