Educational material about genetic tests: does it provide key information for patients and practitioners?

Area of Science:

• Genetics
• Primary Care Medicine
• Health Communication

Background:

• Increasing use of genetic testing in primary care necessitates improved patient counseling resources.
• Primary care practitioners require enhanced skills in basic genetic counseling.
• The quality of informational materials for practitioners and patients is critical for informed genetic testing decisions.

Purpose of the Study:

• To assess the content of printed informational materials for practitioners and patients regarding genetic testing.
• To determine the frequency of inclusion of key elements recommended by policy groups in genetic testing materials.

Main Methods:

• A telephone survey of US organizations developing genetic tests or services.
• Content analysis of pamphlets from these organizations to identify 10 critical evaluation elements.
• Analysis of 115 pamphlets from 125 organizations.

Main Results:

• Nearly 95% of surveyed organizations provided informational materials.
• Elements least frequently included were risks, benefits, patient rights, and intended test use.
• Information on test accuracy was often vague, lacking specificity regarding sensitivity, specificity, or predictive value.

Conclusions:

• Printed materials primarily aided in determining patient eligibility for genetic tests.
• Information crucial for understanding the tests themselves and making informed choices was insufficient.
• Several critical elements must be added to enhance informed decision-making for patients and physicians regarding genetic testing.