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

被引:51
作者
Carere, Deanna Alexis [1 ,2 ]
Kraft, Peter [1 ]
Kaphingst, Kimberly A. [3 ,4 ]
Roberts, J. Scott [5 ]
Green, Robert C. [2 ,6 ,7 ]
机构
[1] Harvard Univ, Sch Publ Hlth, Dept Epidemiol, Program Genet Epidemiol & Stat Genet, Boston, MA 02115 USA
[2] Brigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
[3] Univ Utah, Coll Humanities, Dept Commun, Salt Lake City, UT USA
[4] Univ Utah, Huntsman Canc Inst, Canc Control & Populat Sci, Salt Lake City, UT USA
[5] Univ Michigan, Sch Publ Hlth, Dept Hlth Behav & Hlth Educ, Ann Arbor, MI 48109 USA
[6] Harvard Univ, Sch Med, Boston, MA USA
[7] Partners Personalized Med, Boston, MA USA
基金
美国国家卫生研究院; 加拿大健康研究院;
关键词
direct-to-consumer genetic testing; genetics knowledge; literacy; personal genomic testing; self-efficacy; HEALTH LITERACY; DECISION-MAKING; RISK PERCEPTION; BREAST-CANCER; IMPACT; OUTCOMES; VALIDATION;
D O I
10.1038/gim.2015.34
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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 Likertscale 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.
引用
收藏
页码:65 / 72
页数:8
相关论文
共 38 条
[31]   Direct-to-consumer personal genome testing: ethical and regulatory issues that arise from wanting to 'know' your DNA [J].
Samuel, G. N. ;
Jordens, C. F. C. ;
Kerridge, I. .
INTERNAL MEDICINE JOURNAL, 2010, 40 (03) :220-224
[32]   Alerting the General Population to Genetic Risks: The Value of Health Messages Communicating the Existence of Genetic Risk Factors for Public Health Promotion [J].
Smerecnik, Chris M. R. ;
Mesters, Ilse ;
de Vries, Nanne K. ;
de Vries, Hein .
HEALTH PSYCHOLOGY, 2009, 28 (06) :734-745
[33]   A Systematic Review of the Impact of Genetic Counseling on Risk Perception Accuracy [J].
Smerecnik, Chris M. R. ;
Mesters, Ilse ;
Verweij, Eline ;
de Vries, Nanne K. ;
de Vries, Hein .
JOURNAL OF GENETIC COUNSELING, 2009, 18 (03) :217-228
[34]   A brief measure for assessing generalized anxiety disorder -: The GAD-7 [J].
Spitzer, Robert L. ;
Kroenke, Kurt ;
Williams, Janet B. W. ;
Loewe, Bernd .
ARCHIVES OF INTERNAL MEDICINE, 2006, 166 (10) :1092-1097
[35]   THE ROLE OF SELF-EFFICACY IN ACHIEVING HEALTH BEHAVIOR-CHANGE [J].
STRECHER, VJ ;
DEVELLIS, BM ;
BECKER, MH ;
ROSENSTOCK, IM .
HEALTH EDUCATION QUARTERLY, 1986, 13 (01) :73-91
[36]  
The White House Office of Management and Budget, 1997, REV STAND CLASS FED
[37]  
Veach Patricia McCarthy, 2007, J Genet Couns, V16, P713
[38]   Overview of the SF-36 Health Survey and the International Quality of Life Assessment (IQOLA) Project [J].
Ware, JE ;
Gandek, B .
JOURNAL OF CLINICAL EPIDEMIOLOGY, 1998, 51 (11) :903-912