Literature DB >> 32308873

Public Attitudes Toward Direct to Consumer Genetic Testing.

Grayson L Ruhl1, James W Hazel1, Ellen Wright Clayton1, Bradley A Malin1.   

Abstract

Direct to consumer genetic testing (DTC-GT) is an emerging service that allows individuals to have their DNA tested without having to consult a healthcare provider. DTC-GT can provide insight into various aspects about an individual, including their health and ancestry. However, testing may pose privacy risks and yield distressing results. Despite the growing popularity of DTC-GT, public attitudes toward such services remain largely ill-defined. Using Amazon Mechanical Turk, we administered a web-based survey to over 1,000 individuals to obtain intuition into public attitudes about DTC-GT. S urvey questions were grounded in a literature review of people's views about DTC-GT. The results of the survey indicated that respondents were interested in DTC-GT as a possible way to gain insight about health, ancestry, and family relationships, as well as advance research. Despite this, respondents were concerned that DTC-GT companies and other users of their DTC-GT data would infringe upon their privacy. ©2019 AMIA - All rights reserved.

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Year:  2020        PMID: 32308873      PMCID: PMC7153088     

Source DB:  PubMed          Journal:  AMIA Annu Symp Proc        ISSN: 1559-4076


  27 in total

1.  Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Authors:  Paul A Harris; Robert Taylor; Robert Thielke; Jonathon Payne; Nathaniel Gonzalez; Jose G Conde
Journal:  J Biomed Inform       Date:  2008-09-30       Impact factor: 6.317

Review 2.  Direct-to-consumer genetic testing: perceptions, problems, and policy responses.

Authors:  Timothy Caulfield; Amy L McGuire
Journal:  Annu Rev Med       Date:  2011-09-01       Impact factor: 13.739

3.  Attitudes about regulation among direct-to-consumer genetic testing customers.

Authors:  Juli Murphy Bollinger; Robert C Green; David Kaufman
Journal:  Genet Test Mol Biomarkers       Date:  2013-04-06

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.  Comprehension and Data-Sharing Behavior of Direct-To-Consumer Genetic Test Customers.

Authors:  Scott P McGrath; Jason Coleman; Lotfollah Najjar; Ann Fruhling; Dhundy R Bastola
Journal:  Public Health Genomics       Date:  2016-03-08       Impact factor: 2.000

6.  Don’t Try This at Home: the FDA’s Restrictive Regulation of Home Testing Devices.

Authors:  Shelby Baird
Journal:  Duke Law J       Date:  2017-11

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

Review 8.  The research participant perspective related to the conduct of genomic cohort studies: A systematic review of the quantitative literature.

Authors:  Deborah Goodman; Deborah Bowen; Lari Wenzel; Paris Tehrani; Francis Fernando; Araksi Khacheryan; Farihah Chowdhury; Catherine O Johnson; Karen Edwards
Journal:  Transl Behav Med       Date:  2018-01-29       Impact factor: 3.046

9.  Attitudes regarding privacy of genomic information in personalized cancer therapy.

Authors:  Deevakar Rogith; Rafeek A Yusuf; Shelley R Hovick; Susan K Peterson; Allison M Burton-Chase; Yisheng Li; Funda Meric-Bernstam; Elmer V Bernstam
Journal:  J Am Med Inform Assoc       Date:  2014-04-15       Impact factor: 4.497

10.  Direct-to-consumer genetic testing: a revised position statement of the American College of Medical Genetics and Genomics.

Authors: 
Journal:  Genet Med       Date:  2015-12-17       Impact factor: 8.822

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  4 in total

1.  Simultaneous inference of parental admixture proportions and admixture times from unphased local ancestry calls.

Authors:  Siddharth Avadhanam; Amy L Williams
Journal:  Am J Hum Genet       Date:  2022-07-30       Impact factor: 11.043

2.  Direct-to-consumer genetic testing in the news: a descriptive analysis.

Authors:  Corey H Basch; Grace C Hillyer; Lalitha Samuel; Erela Datuowei; Betty Cohn
Journal:  J Community Genet       Date:  2022-10-14

3.  Direct-to-consumer genetic testing: Prospective users' attitudes toward information about ancestry and biological relationships.

Authors:  James W Hazel; Catherine Hammack-Aviran; Kathleen M Brelsford; Bradley A Malin; Laura M Beskow; Ellen Wright Clayton
Journal:  PLoS One       Date:  2021-11-29       Impact factor: 3.240

4.  Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions.

Authors:  Zhijun Yin; Lijun Song; Ellen W Clayton; Bradley A Malin
Journal:  PLoS One       Date:  2020-09-08       Impact factor: 3.240

  4 in total

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