An Ethical Framework for Disclosing Individual Genetic Findings to Patients, Research Participants, and Relatives

Jeffrey S. Farroni, Jessica A. Moore, Colleen M. Gallagher

Research output: Chapter in Book/Report/Conference proceedingChapter

1 Scopus citations

Abstract

Current advances in genetic screening, biomarker development, personalized medicine, and targeted therapeutics have generated unprecedented quantities of patient data. These data are becoming increasingly vital as instruments of patient care and research. However, the nature of genetic information is such that it has clinically actionable implications for the patient’s relatives. This chapter focuses on a practical framework for the disclosure of genetic information to not only the patient but also to the family members who may be impacted by these findings. The potential benefit and utility of this information is carefully balanced with reducing the possible risks and informational harms by the use of policy, institutional safeguards, and empowering patient autonomy through rigorous informed consent standards.

Original languageEnglish (US)
Title of host publicationEthical Challenges in Oncology
Subtitle of host publicationPatient Care, Research, Education, and Economics
PublisherElsevier
Pages275-296
Number of pages22
ISBN (Electronic)9780128038314
ISBN (Print)9780128039014
DOIs
StatePublished - Jan 1 2017
Externally publishedYes

Keywords

  • Incidental findings
  • informed consent
  • research ethics

ASJC Scopus subject areas

  • Medicine(all)

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