Literature DB >> 22109820

Users' motivations to purchase direct-to-consumer genome-wide testing: an exploratory study of personal stories.

Yeyang Su1, Heidi C Howard, Pascal Borry.   

Abstract

The relatively rapid growth of the direct-to-consumer (DTC) genetic testing market in the last few years has led to increasing attention from both the scientific community and policy makers. One voice often missing in these debates, however, is that of the actual user of these genetic testing services. In order to gain a better picture of the motivations and expectations that propel individuals to purchase DTC genome-wide testing, we conducted an exploratory study based on users' personal stories. Through qualitative content analysis of users' personal stories found on Internet blogs and DTC genetic testing companies' websites, we identified five major sets of motivations and expectations towards DTC genome-wide testing. These themes are related to (1) health, (2) curiosity and fascination, (3) genealogy, (4) contributing to research, and (5) recreation. Obtaining such information can help us to understand how users consider genome-wide testing and forms the basis for further research.

Year:  2011        PMID: 22109820      PMCID: PMC3186033          DOI: 10.1007/s12687-011-0048-y

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  31 in total

1.  Blurring lines. The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects.

Authors:  Heidi C Howard; Bartha Maria Knoppers; Pascal Borry
Journal:  EMBO Rep       Date:  2010-07-16       Impact factor: 8.807

2.  Letting the genome out of the bottle--will we get our wish?

Authors:  David J Hunter; Muin J Khoury; Jeffrey M Drazen
Journal:  N Engl J Med       Date:  2008-01-10       Impact factor: 91.245

3.  Genetic risk information for common diseases may indeed be already useful for prevention and early detection.

Authors:  J Gulcher; K Stefansson
Journal:  Eur J Clin Invest       Date:  2010-01       Impact factor: 4.686

Review 4.  The current landscape for direct-to-consumer genetic testing: legal, ethical, and policy issues.

Authors:  Stuart Hogarth; Gail Javitt; David Melzer
Journal:  Annu Rev Genomics Hum Genet       Date:  2008       Impact factor: 8.929

5.  ACOG Committee Opinion No. 409: Direct-to-consumer marketing of genetic testing.

Authors: 
Journal:  Obstet Gynecol       Date:  2008-06       Impact factor: 7.661

6.  Personal genome testing: do you know what you are buying?

Authors:  Heidi C Howard; Pascal Borry
Journal:  Am J Bioeth       Date:  2009       Impact factor: 11.229

7.  Social networkers' attitudes toward direct-to-consumer personal genome testing.

Authors:  Amy L McGuire; Christina M Diaz; Tao Wang; Susan G Hilsenbeck
Journal:  Am J Bioeth       Date:  2009       Impact factor: 11.229

8.  Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: a population-based study.

Authors:  Asa Kettis-Lindblad; Lena Ring; Eva Viberth; Mats G Hansson
Journal:  Scand J Public Health       Date:  2007       Impact factor: 3.021

9.  Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors.

Authors:  Pascal Borry; Heidi C Howard; Karine Sénécal; Denise Avard
Journal:  Fam Cancer       Date:  2009-06-02       Impact factor: 2.375

10.  Characteristics of users of online personalized genomic risk assessments: implications for physician-patient interactions.

Authors:  Colleen M McBride; Sharon Hensley Alford; Robert J Reid; Eric B Larson; Andreas D Baxevanis; Lawrence C Brody
Journal:  Genet Med       Date:  2009-08       Impact factor: 8.822

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  36 in total

1.  Neither as harmful as feared by critics nor as empowering as promised by providers: risk information offered direct to consumer by personal genomics companies.

Authors:  Anders Nordgren
Journal:  J Community Genet       Date:  2012-04-05

2.  Captious certainties: makings, meanings and misreadings of consumer-oriented genetic testing.

Authors:  Norbert W Paul; Mita Banerjee; Susanne Michl
Journal:  J Community Genet       Date:  2013-11-08

Review 3.  Direct-to-consumer personalized genomic testing.

Authors:  Cinnamon S Bloss; Burcu F Darst; Eric J Topol; Nicholas J Schork
Journal:  Hum Mol Genet       Date:  2011-08-09       Impact factor: 6.150

Review 4.  Direct-to-consumer genomic testing: systematic review of the literature on user perspectives.

Authors:  Lesley Goldsmith; Leigh Jackson; Anita O'Connor; Heather Skirton
Journal:  Eur J Hum Genet       Date:  2012-02-15       Impact factor: 4.246

5.  Impacts of personal DNA ancestry testing.

Authors:  Caryn Kseniya Rubanovich; Riley Taitingfong; Cynthia Triplett; Ondrej Libiger; Nicholas J Schork; Jennifer K Wagner; Cinnamon S Bloss
Journal:  J Community Genet       Date:  2020-08-13

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

7.  "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

8.  Primary care patients' views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study.

Authors:  Katherine Wasson; Tonya Nashay Sanders; Nancy S Hogan; Sara Cherny; Kathy J Helzlsouer
Journal:  J Community Genet       Date:  2013-07-07

9.  Awareness of genetic counseling and perceptions of its purpose: a survey of the Canadian public.

Authors:  Melissa Maio; Prescilla Carrion; Elyse Yaremco; Jehannine C Austin
Journal:  J Genet Couns       Date:  2013-08-21       Impact factor: 2.537

10.  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

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