Literature DB >> 22194036

Informed choice in direct-to-consumer genetic testing (DTCGT) websites: a content analysis of benefits, risks, and limitations.

Amanda Singleton1, Lori Hamby Erby, Kathryn V Foisie, Kimberly A Kaphingst.   

Abstract

An informed choice about health-related direct-to-consumer genetic testing (DTCGT) requires knowledge of potential benefits, risks, and limitations. To understand the information that potential consumers of DTCGT services are exposed to on company websites, we conducted a content analysis of 23 health-related DTCGT websites. Results revealed that benefit statements outweighed risk and limitation statements 6 to 1. The most frequently described benefits were: 1) disease prevention, 2) consumer education, 3) personalized medical recommendations, and 4) the ability to make health decisions. Thirty-five percent of websites also presented at least one risk of testing. Seventy-eight percent of websites mentioned at least one limitation of testing. Based on this information, potential consumers might get an inaccurate picture of genetic testing which could impact their ability to make an informed decision. Practices that enhance the presentation of balanced information on DTCGT company websites should be encouraged.

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Mesh:

Year:  2011        PMID: 22194036      PMCID: PMC3348288          DOI: 10.1007/s10897-011-9474-6

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  20 in total

1.  The educational value of consumer-targeted prescription drug print advertising.

Authors:  R A Bell; M S Wilkes; R L Kravitz
Journal:  J Fam Pract       Date:  2000-12       Impact factor: 0.493

2.  Facilitating informed choice in prenatal testing: how well are we doing?

Authors:  T M Marteau; E Dormandy
Journal:  Am J Med Genet       Date:  2001

3.  Limitations of direct-to-consumer advertising for clinical genetic testing.

Authors:  Sarah E Gollust; Sara Chandros Hull; Benjamin S Wilfond
Journal:  JAMA       Date:  2002-10-09       Impact factor: 56.272

4.  Direct-to-consumer sales of genetic services on the Internet.

Authors:  Sarah E Gollust; Benjamin S Wilfond; Sara Chandros Hull
Journal:  Genet Med       Date:  2003 Jul-Aug       Impact factor: 8.822

5.  Direct-to-consumer online genetic testing and the four principles: an analysis of the ethical issues.

Authors:  Katherine Wasson; E David Cook; Kathy Helzlsouer
Journal:  Ethics Med       Date:  2006

Review 6.  Regulation of prescription drug promotion: direct-to-consumer advertising.

Authors:  M Baylor-Henry; N A Drezin
Journal:  Clin Ther       Date:  1998       Impact factor: 3.393

Review 7.  Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests.

Authors:  Christopher H Wade; Benjamin S Wilfond
Journal:  Am J Med Genet C Semin Med Genet       Date:  2006-11-15       Impact factor: 3.908

8.  Impact of direct-to-consumer advertising for hereditary breast cancer testing on genetic services at a managed care organization: a naturally-occurring experiment.

Authors:  Judy Mouchawar; Sharon Hensley-Alford; Suzanne Laurion; Jennifer Ellis; Alanna Kulchak-Rahm; Melissa L Finucane; Richard Meenan; Lisen Axell; Rebecca Pollack; Debra Ritzwoller
Journal:  Genet Med       Date:  2005-03       Impact factor: 8.822

9.  Informed decision making in the context of prenatal screening.

Authors:  Matthijs van den Berg; Danielle R M Timmermans; Leo P ten Kate; John M G van Vugt; Gerrit van der Wal
Journal:  Patient Educ Couns       Date:  2005-10-20

10.  Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers.

Authors:  Christina R Lachance; Lori A H Erby; Beth M Ford; Vincent C Allen; Kimberly A Kaphingst
Journal:  Genet Med       Date:  2010-05       Impact factor: 8.822

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  22 in total

Review 1.  Ancestry Testing and the Practice of Genetic Counseling.

Authors:  Brianne E Kirkpatrick; Misha D Rashkin
Journal:  J Genet Couns       Date:  2016-10-04       Impact factor: 2.537

2.  Factors Associated with Acceptability, Consideration and Intention of Uptake of Direct-To-Consumer Genetic Testing: A Survey Study.

Authors:  Kelly F J Stewart; Daša Kokole; Anke Wesselius; Annemie M W J Schols; Maurice P Zeegers; Hein de Vries; Liesbeth A D M van Osch
Journal:  Public Health Genomics       Date:  2018-10-25       Impact factor: 2.000

3.  Effect of direct-to-consumer genetic tests on health behaviour and anxiety: a survey of consumers and potential consumers.

Authors:  Corin Egglestone; Anne Morris; Ann O'Brien
Journal:  J Genet Couns       Date:  2013-04-03       Impact factor: 2.537

Review 4.  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

5.  Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.

Authors:  Josephine Johnston; John D Lantos; Aaron Goldenberg; Flavia Chen; Erik Parens; Barbara A Koenig
Journal:  Hastings Cent Rep       Date:  2018-07       Impact factor: 2.683

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

Authors:  J Scott Roberts; Jenny Ostergren
Journal:  Curr Genet Med Rep       Date:  2013-09

Review 7.  Third party interpretation of raw genetic data: an ethical exploration.

Authors:  Lauren Badalato; Louiza Kalokairinou; Pascal Borry
Journal:  Eur J Hum Genet       Date:  2017-08-23       Impact factor: 4.246

8.  2016 European Guidelines on cardiovascular disease prevention in clinical practice : The Sixth Joint Task Force of the European Society of Cardiology and Other Societies on Cardiovascular Disease Prevention in Clinical Practice (constituted by representatives of 10 societies and by invited experts).

Authors:  Massimo F Piepoli
Journal:  Int J Behav Med       Date:  2017-06

9.  2016 European Guidelines on cardiovascular disease prevention in clinical practice: The Sixth Joint Task Force of the European Society of Cardiology and Other Societies on Cardiovascular Disease Prevention in Clinical Practice (constituted by representatives of 10 societies and by invited experts)Developed with the special contribution of the European Association for Cardiovascular Prevention & Rehabilitation (EACPR).

Authors:  Massimo F Piepoli; Arno W Hoes; Stefan Agewall; Christian Albus; Carlos Brotons; Alberico L Catapano; Marie-Therese Cooney; Ugo Corrà; Bernard Cosyns; Christi Deaton; Ian Graham; Michael Stephen Hall; F D Richard Hobbs; Maja-Lisa Løchen; Herbert Löllgen; Pedro Marques-Vidal; Joep Perk; Eva Prescott; Josep Redon; Dimitrios J Richter; Naveed Sattar; Yvo Smulders; Monica Tiberi; H Bart van der Worp; Ineke van Dis; W M Monique Verschuren; Simone Binno
Journal:  Eur Heart J       Date:  2016-05-23       Impact factor: 29.983

10.  A tiered-layered-staged model for informed consent in personal genome testing.

Authors:  Eline M Bunnik; A Cecile J W Janssens; Maartje H N Schermer
Journal:  Eur J Hum Genet       Date:  2012-11-21       Impact factor: 4.246

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