Should a genetic counselor disclose a significant finding to his patient?

An elderly patient lost his sight due to a hereditary condition. When the condition was diagnosed, a genetic counselor became involved. Among other things, he offered to test the patient’s adult son to see if the son was likely to get the same condition. The son agreed to the testing, which involved a thorough informed consent process. The counselor was unaware that, in order to validate the test, the lab would verify the genetic relationship of the father and son. The lab determined that the son wasn’t genetically related to the patient. The elderly patient’s spouse had died approximately a year before.

            According to the counselor, there was no indication from either patient that they knew that they weren’t genetically related. It was possible that the elderly patient’s partner had had an affair and become pregnant without informing her spouse (the patient) or, eventually, her adult son. Since the test was only meant to determine if the younger patient had the genetic condition, the counselor was unsure whether he should just disclose that result, or also disclose that the son and father were not genetically related.

            The ethicist identified two competing values. On the one hand, there is a principle of modern medicine that healthcare providers should not withhold material information from their patients, as this is a form of paternalism. Further, if the counselor withheld the information, the patients might eventually find out, which would lead to distrust of the healthcare system (and potential legal action). On the other hand, there is a principle of modern medicine according to which healthcare providers should “do no harm”. Revealing this information was likely to cause significant harm.

 The ethicist recommended that the counselor disclose the information to the patient.