Direct-to-consumer genetic testing: an assessment of genetic counselors' knowledge and beliefs

Genet Med. 2011 Apr;13(4):325-32. doi: 10.1097/GIM.0b013e3182011636.


Purpose: Direct-to-consumer genetic testing is a new means of obtaining genetic testing outside of a traditional clinical setting. This study assesses genetic counselors' experience, knowledge, and beliefs regarding direct-to-consumer genetic testing for tests that would currently be offered in genetics clinics.

Methods: Members of the National Society of Genetic Counselors completed a web-administered survey in February 2008.

Results: Response rate was 36%; the final data analysis included 312 respondents. Eighty-three percent of respondents had two or fewer inquiries about direct-to-consumer genetic testing, and 14% had received requests for test interpretation or discussion. Respondents believed that genetic counselors have a professional obligation to be knowledgeable about direct-to-consumer genetic testing (55%) and interpret results (48%). Fifty-one percent of respondents thought genetic testing should be limited to a clinical setting; 56% agreed direct-to-consumer genetic testing is acceptable if genetic counseling is provided. More than 70% of respondents would definitely or possibly consider direct-to-consumer testing for patients who (1) have concerns about genetic discrimination, (2) want anonymous testing, or (3) have geographic constraints.

Conclusions: Results indicate that genetic counselors have limited patient experiences with direct-to-consumer genetic testing and are cautiously considering if and under what circumstances this approach should be used.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Attitude of Health Personnel
  • Community Participation
  • Culture
  • Data Collection
  • Genetic Counseling*
  • Genetic Testing / methods*
  • Humans
  • Knowledge
  • Quality Assurance, Health Care