Direct-to-Consumer Genetic Testing: Genetic Counselors

Carolyn B. Heuer, Arcadia University, Elissa R. Levin, Navigenics, Curtis R. Coughlin, II, Childrens Hospital of Philadelphia, and Laura J. Conway, Arcadia University. Genetic testing can identify risks to an individuals health as well as risks to children or other family members. Under the traditional genetic testing model, individuals meet with a genetic counselor or other medical professional to discuss the benefits and limitations of testing before the testing is performed. Results are provided to the medical professional, who then discusses the results and their implications with the patient in order to design a medical management plan. However, marketing of genetic tests directly to the consumer (DTC) by testing companies is becoming increasingly common. In some cases, companies who provide DTC testing do not require the involvement of any health professionals. As the spectrum of available tests becomes more complex, the concern over the lack of oversight of the clinical validity and utility grows. There is a potential conflict in DTC testing between the rights of individuals to control their own health information (autonomy) and the need to ensure individuals understand the test results and receive the proper follow-up health care (beneficence). Because genetic counselors are so often involved in genetic testing, this study investigated genetic counselors attitudes and practices regarding DTC genetic testing.

Category:

Education

Tags:

• Direct to Consumer
• Genetic Testing
• Genetic Counselors
• Carolyn B. Heuer
• Elissa R. Levin
• Curtis R. Coughlin II
• Laura J. Conway
• Villanova University