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

Kathryn T. Hock, Kurt D. Christensen, Beverly M. Yashar, J. Scott Roberts, Sarah E. Gollust, Wendy R. Uhlmann

Research output: Contribution to journalArticle

43 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)325-332
Number of pages8
JournalGenetics in Medicine
Volume13
Issue number4
DOIs
StatePublished - Apr 2011

Keywords

  • direct-to-consumer
  • genetic counselors
  • genetic testing

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