Literature DB >> 24058877

Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies.

J Scott Roberts1, Jenny Ostergren.   

Abstract

Direct-to-consumer genetic testing (DTC-GT) has sparked much controversy and undergone dramatic changes in its brief history. Debates over appropriate health policies regarding DTC-GT would benefit from empirical research on its benefits, harms, and limitations. We review the recent literature (2011-present) and summarize findings across (1) content analyses of DTC-GT websites, (2) studies of consumer perspectives and experiences, and (3) surveys of relevant health care providers. Findings suggest that neither the health benefits envisioned by DTC-GT proponents (e.g., significant improvements in positive health behaviors) nor the worst fears expressed by its critics (e.g., catastrophic psychological distress and misunderstanding of test results, undue burden on the health care system) have materialized to date. However, research in this area is in its early stages and possesses numerous key limitations. We note needs for future studies to illuminate the impact of DTC-GT and thereby guide practice and policy regarding this rapidly evolving approach to personal genomics.

Entities:  

Keywords:  Consumer genomics; Genetic testing; Health ethics; Health policy; Personalized medicine

Year:  2013        PMID: 24058877      PMCID: PMC3777821          DOI: 10.1007/s40142-013-0018-2

Source DB:  PubMed          Journal:  Curr Genet Med Rep        ISSN: 2167-4876


  57 in total

1.  Racial and ethnic differences in direct-to-consumer genetic tests awareness in HINTS 2007: sociodemographic and numeracy correlates.

Authors:  Aisha T Langford; Ken Resnicow; J Scott Roberts; Brian J Zikmund-Fisher
Journal:  J Genet Couns       Date:  2012-01-21       Impact factor: 2.537

2.  Direct-to-consumer personal genomic testing: a case study and practical recommendations for “genomic counseling”.

Authors:  Amy C Sturm; Kandamurugu Manickam
Journal:  J Genet Couns       Date:  2012-06       Impact factor: 2.537

Review 3.  The future of direct-to-consumer clinical genetic tests.

Authors:  Felix W Frueh; Henry T Greely; Robert C Green; Stuart Hogarth; Sue Siegel
Journal:  Nat Rev Genet       Date:  2011-06-01       Impact factor: 53.242

4.  Awareness and uptake of direct-to-consumer genetic testing among cancer cases, their relatives, and controls: the Northwest Cancer Genetics Network.

Authors:  Taryn O Hall; Anne D Renz; Katherine W Snapinn; Deborah J Bowen; Karen L Edwards
Journal:  Genet Test Mol Biomarkers       Date:  2012-06-25

5.  Educational needs of primary care physicians regarding direct-to-consumer genetic testing.

Authors:  Karen P Powell; Carol A Christianson; Whitney A Cogswell; Gaurav Dave; Amit Verma; Sonja Eubanks; Vincent C Henrich
Journal:  J Genet Couns       Date:  2011-12-30       Impact factor: 2.537

6.  "It's not like judgment day": public understanding of and reactions to personalized genomic risk information.

Authors:  Erynn S Gordon; Georgia Griffin; Lisa Wawak; Hauchie Pang; Sarah E Gollust; Barbara A Bernhardt
Journal:  J Genet Couns       Date:  2011-12-17       Impact factor: 2.537

7.  Experiences of early users of direct-to-consumer genomics in Switzerland: an exploratory study.

Authors:  E Vayena; E Gourna; J Streuli; E Hafen; B Prainsack
Journal:  Public Health Genomics       Date:  2012-11-15       Impact factor: 2.000

8.  Patients' understanding of and responses to multiplex genetic susceptibility test results.

Authors:  Kimberly A Kaphingst; Colleen M McBride; Christopher Wade; Sharon Hensley Alford; Robert Reid; Eric Larson; Andreas D Baxevanis; Lawrence C Brody
Journal:  Genet Med       Date:  2012-07       Impact factor: 8.822

9.  Public awareness and use of direct-to-consumer personal genomic tests from four state population-based surveys, and implications for clinical and public health practice.

Authors:  Katherine Kolor; Debra Duquette; Amy Zlot; Joan Foland; Beth Anderson; Rebecca Giles; Jennifer Wrathall; Muin J Khoury
Journal:  Genet Med       Date:  2012-07-19       Impact factor: 8.822

Review 10.  Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours.

Authors:  Theresa M Marteau; David P French; Simon J Griffin; A T Prevost; Stephen Sutton; Clare Watkinson; Sophie Attwood; Gareth J Hollands
Journal:  Cochrane Database Syst Rev       Date:  2010-10-06
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  53 in total

1.  Case Report: Direct Access Genetic Testing and A False-Positive Result For Long QT Syndrome.

Authors:  Sarah Predham; Sara Hamilton; Alison M Elliott; William T Gibson
Journal:  J Genet Couns       Date:  2015-08-30       Impact factor: 2.537

2.  Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience.

Authors:  Sarah E Gollust; Stacy W Gray; Deanna Alexis Carere; Barbara A Koenig; Lisa Soleymani Lehmann; Amy L McGUIRE; Richard R Sharp; Kayte Spector-Bagdady; N A Wang; Robert C Green; J Scott Roberts
Journal:  Milbank Q       Date:  2017-06       Impact factor: 4.911

3.  The effect of disease risk probability and disease type on interest in clinic-based versus direct-to-consumer genetic testing services.

Authors:  Kerry Sherman; Laura-Kate Shaw; Katrina Champion; Fernanda Caldeira; Margaret McCaskill
Journal:  J Behav Med       Date:  2015-03-27

4.  Factors Associated with Interest in Gene-Panel Testing and Risk Communication Preferences in Women from BRCA1/2 Negative Families.

Authors:  Kristina G Flores; Laurie E Steffen; Christopher J McLouth; Belinda E Vicuña; Amanda Gammon; Wendy Kohlmann; Lucretia Vigil; Zoneddy R Dayao; Melanie E Royce; Anita Y Kinney
Journal:  J Genet Couns       Date:  2016-08-06       Impact factor: 2.537

Review 5.  Emerging issues in public health genomics.

Authors:  Dana Dolinoy; Beth Tarini; J Scott Roberts
Journal:  Annu Rev Genomics Hum Genet       Date:  2014       Impact factor: 8.929

6.  Influence of individual differences in disease perception on consumer response to direct-to-consumer genomic testing.

Authors:  D L Boeldt; N J Schork; E J Topol; C S Bloss
Journal:  Clin Genet       Date:  2014-06-06       Impact factor: 4.438

7.  The impact of personal genomics on risk perceptions and medical decision-making.

Authors:  Joshua L Krieger; Fiona Murray; J Scott Roberts; Robert C Green
Journal:  Nat Biotechnol       Date:  2016-09-08       Impact factor: 54.908

8.  EMR documentation of physician-patient communication following genomic counseling for actionable complex disease and pharmacogenomic results.

Authors:  K Sweet; A C Sturm; T Schmidlen; S Hovick; J Peng; K Manickam; A Salikhova; J McElroy; L Scheinfeldt; A E Toland; J S Roberts; M Christman
Journal:  Clin Genet       Date:  2016-07-28       Impact factor: 4.438

9.  Direct to consumer genetic testing-law and policy concerns in Ireland.

Authors:  Aisling de Paor
Journal:  Ir J Med Sci       Date:  2017-11-25       Impact factor: 1.568

10.  Utilization of Genetic Counseling after Direct-to-Consumer Genetic Testing: Findings from the Impact of Personal Genomics (PGen) Study.

Authors:  Diane R Koeller; Wendy R Uhlmann; Deanna Alexis Carere; Robert C Green; J Scott Roberts
Journal:  J Genet Couns       Date:  2017-05-16       Impact factor: 2.537

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