Consent, notification part of guidelines on genetic tests

Ethics Forum. Feb. 5, 2001.

Scenario: How can you avoid the pitfalls of genetic testing?

A recent headline stated, "Ignorance undercuts genetic tests' potential." The article described many ethical pitfalls of genetic testing when offered by physicians who may not have sufficient knowledge of these tests and the far-reaching implications of test results. Are there basic ethical guidelines that can help physicians navigate these uncharted waters in the course of ongoing relationships with patients, as well as when patients request genetic testing?

Reply:

The first ethical principle physicians should follow when confronting the potentially overwhelming domain of genetic information (and a sound ethical course in any situation) is to seek help when unsure of the terrain. The "ethical pitfalls" highlighted in that news article concern misinterpretation of test results by physicians and patient misunderstanding of the results communicated to them. Help is available to evade these errors, and more is on the way. In most clinical settings, genetic counseling is a prerequisite for performing genetic testing, and genetic counselors have the knowledge and proper training for the job.

Accessible training is also on the way for physicians who want to acquire expertise themselves. State and specialty societies are meeting clinicians' needs for more genetic information with CME courses.

That said, what can physicians themselves do, right now, to respond ethically to the exploding information and misinformation about genetic testing? Patient confusion resulting from media reports offers primary care physicians an excellent opportunity to take a lead in educating patients, for example, by reviewing a patient's family health history and addressing potential concerns. Obviously, doctors cannot undertake a review of all patient medical records in light of advances in genetic information and tests. But they can say, "I'm making it a practice to go over health records and family medical histories with all my patients as the era of genetic testing and technology approaches." Family medical history is the foundation of genetic knowledge. With information from this source, physicians can pursue the necessary course for making further decisions regarding testing. Here are some ethical guidelines to follow after reviewing family history with patients: [...]