title: Direct-to-Consumer Genetic Testing: User Motivations, Decision Making, and Perceived Utility of Results.
abstract: To describe the interests, decision making, and responses of consumers of direct-to-consumer personal genomic testing (DTC-PGT) services.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Department of Health Behavior &amp; Health Education, University of Michigan School of Public Health, Ann Arbor, MI, USA.
authors.forename: J Scott
authors.initials: JS
authors.lastname: Roberts
authors.forename: Michele C
authors.initials: MC
authors.lastname: Gornick
authors.forename: Deanna Alexis
authors.initials: DA
authors.lastname: Carere
authors.forename: Wendy R
authors.initials: WR
authors.lastname: Uhlmann
authors.forename: Mack T
authors.initials: MT
authors.lastname: Ruffin
authors.forename: Robert C
authors.initials: RC
authors.lastname: Green
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D001943:Breast Neoplasms / Q000523:psychology; D003258:Consumer Behavior; D003657:Decision Making; D000067108:Direct-To-Consumer Screening and Testing / Q000523:psychology*; D005260:Female; D005820:Genetic Testing / Q000379:methods*; D023281:Genomics; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009042:Motivation; D010465:Perception; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Direct-to-consumer genomic testing; Genetic testing; Health policy; Personal genomics; Test utility