Precision Medicine and the Changing Landscape of Research Ethics

Marilyn J. Hammer, PhD, DC, RN

Disclosures

Oncol Nurs Forum. 2016;43(2):149-150. 

In This Article

Morality in Genetics and Genomics

In addition, the vast amount of genetic variants that are unknown raises questions regarding disclosing findings to patients and their family members. One approach is to avoid this by limiting screening to specific known genes or gene panels (Knoppers, Zawati, & Senecal, 2015). However, this approach is not sustainable because research needs to be conducted on the unknowns to uncover clinical application. Morally, is limiting investigations to established clinically applicable gene variant areas being negligent or justifiable until the unknowns become known? From the patient and family member perspective, they have the right to make the choice about being tested and informed. Grayness emerges when a known variant is found (and accurate to a clinical application) in which a family member of the tested individual would also benefit from being tested but may not want to be tested or even know the results of the family member who was tested. A larger problem arises regarding what to disclose or not disclose when an unknown variant emerges. What is the moral and ethical obligation of the provider in these scenarios? If part of a research study, how would the individuals' and family members' choices alter findings? No definitive answers to these questions have been found yet, and decisions are often made on a case-by-case basis.

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