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Genet Med. 2016 Jan;18(1):65-72. doi: 10.1038/gim.2015.34. Epub 2015 Mar 26.

Consumers report lower confidence in their genetics knowledge following direct-to-consumer personal genomic testing.

Author information

1
Program in Genetic Epidemiology and Statistical Genetics, Department of Epidemiology, Harvard School of Public Health, Boston, Massachusetts, USA.
2
Division of Genetics, Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.
3
Department of Communication, College of Humanities, The University of Utah, Salt Lake City, Utah, USA.
4
Cancer Control and Population Sciences, Huntsman Cancer Institute, The University of Utah, Salt Lake City, Utah, USA.
5
Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan, USA.
6
Harvard Medical School, Boston, Massachusetts, USA.
7
Partners Personalized Medicine, Boston, Massachusetts, USA.

Abstract

PURPOSE:

The aim of this study was to measure changes to genetics knowledge and self-efficacy following personal genomic testing (PGT).

METHODS:

New customers of 23andMe and Pathway Genomics completed a series of online surveys. We measured genetics knowledge (nine true/false items) and genetics self-efficacy (five Likert-scale items) before receipt of results and 6 months after results and used paired methods to evaluate change over time. Correlates of change (e.g., decision regret) were identified using linear regression.

RESULTS:

998 PGT customers (59.9% female; 85.8% White; mean age 46.9 ± 15.5 years) were included in our analyses. Mean genetics knowledge score was 8.15 ± 0.95 (out of 9) at baseline and 8.25 ± 0.92 at 6 months (P = 0.0024). Mean self-efficacy score was 29.06 ± 5.59 (out of 35) at baseline and 27.7 ± 5.46 at 6 months (P < 0.0001); on each item, 30-45% of participants reported lower self-efficacy following PGT. Change in self-efficacy was positively associated with health-care provider consultation (P = 0.0042), impact of PGT on perceived control over one's health (P < 0.0001), and perceived value of PGT (P < 0.0001) and was negatively associated with decision regret (P < 0.0001).

CONCLUSION:

Lowered genetics self-efficacy following PGT may reflect an appropriate reevaluation by consumers in response to receiving complex genetic information.Genet Med 18 1, 65-72.

PMID:
25812042
PMCID:
PMC4583799
DOI:
10.1038/gim.2015.34
[Indexed for MEDLINE]
Free PMC Article

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