Abstract
This clinical case report illustrates the potential dilemmas that can arise from knowledge gained through genetic analysis. These conflicts require careful ethical analysis of presumed duties to protect patient privacy and maintain confidentiality, the duty to warn a second party of a health risk, and the duty of veracity. While the questions raised by genetic testing of one individual for disease that reveals potentially important information about relatives, such as risk for Huntington chorea or breast cancer, have been discussed, the continuing expansion in our capacity for sophisticated genetic analysis continues to present new and challenging situations. The resolution of this case and others like it requires close collaboration among the treatment team, geneticists, and clinical ethicists.
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Notes
Prior to documenting and reporting this case, we first obtained verbal consent from the patient to discuss both the medical and ethical aspects of his situation in professional forums. In addition, we submitted the plan (including the patient’s verbal consent) for developing the case study for dissemination to the hospital’s Institutional Review Board, using their formal “determination” process. The IRB deemed the project to be “not research” and thus did not require IRB approval. Finally, specific potentially identifying descriptors of this patient that are not relevant to the discussion have been altered.
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Daly, B.J., Rosko, A., Zhang, S. et al. The Devil is in the Details: Confidentiality Challenges in the Age of Genetics. HEC Forum 27, 79–86 (2015). https://doi.org/10.1007/s10730-014-9245-5
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DOI: https://doi.org/10.1007/s10730-014-9245-5