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

View Abstract

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.

Investigators
Abbreviation
Genet. Med.
Publication Date
2011-01-12
Volume
13
Issue
4
Page Numbers
325-32
Pubmed ID
21233722
Medium
Print
Full Title
Direct-to-consumer genetic testing: an assessment of genetic counselors' knowledge and beliefs.
Authors
Hock KT, Christensen KD, Yashar BM, Roberts JS, Gollust SE, Uhlmann WR