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Public Health Genomics. 2017;20(1):36-45. doi: 10.1159/000455006. Epub 2017 Jan 10.

Direct-to-Consumer Genetic Testing: User Motivations, Decision Making, and Perceived Utility of Results.

Author information

1
Department of Health Behavior & Health Education, University of Michigan School of Public Health, Ann Arbor, MI, USA.

Abstract

BACKGROUND/AIMS:

To describe the interests, decision making, and responses of consumers of direct-to-consumer personal genomic testing (DTC-PGT) services.

METHODS:

Prior to 2013 regulatory restrictions on DTC-PGT services, 1,648 consumers from 2 leading companies completed Web surveys before and after receiving test results.

RESULTS:

Prior to testing, DTC-PGT consumers were as interested in ancestry (74% very interested) and trait information (72%) as they were in disease risks (72%). Among disease risks, heart disease (68% very interested), breast cancer (67%), and Alzheimer disease (66%) were of greatest interest prior to testing. Interest in disease risks was associated with female gender and poorer self-reported health (p < 0.01). Many consumers (38%) did not consider the possibility of unwanted information before purchasing services; this group was more likely to be older, male, and less educated (p < 0.05). After receiving results, 59% of respondents said test information would influence management of their health; 2% reported regret about seeking testing and 1% reported harm from results.

CONCLUSION:

DTC-PGT has attracted controversy because of the health-related information it provides, but nonmedical information is of equal or greater interest to consumers. Although many consumers did not fully consider potential risks prior to testing, DTC-PGT was generally perceived as useful in informing future health decisions.

KEYWORDS:

Direct-to-consumer genomic testing; Genetic testing; Health policy; Personal genomics; Test utility

PMID:
28068660
DOI:
10.1159/000455006
[Indexed for MEDLINE]
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