Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online pre-purchase information for UK consumers

Jacqueline Hall, Rena Gertz, Joan Amato, Claudia Pagliari

Research output: Contribution to journalArticlepeer-review

Abstract / Description of output

The declining cost of DNA sequencing has been accompanied by a proliferation of companies selling ‘direct-to-consumer genetictesting’ (DTC-GT) services. Many of these are marketed online as tools for enabling citizens to make more informed decisionsabout their health, wellness and lifestyle. We assessed the ‘information for consumers’ provided by these companies at theprepurchase stage, which could influence initial decisions to part with money, data or tissue samples. A scoping exerciserevealed 65 DTC-GT companies advertising their services online to consumers in the United Kingdom, of which 15 met ourinclusion criteria. We benchmarked their consumer information against the good practice principles developed by the UK HumanGenetics Commission (HGC). No provider complied with all the HGC principles and overall levels of compliance variedconsiderably. Although consent for testing was discussed by all but one company, information about data reuse for research orother purposes was often sparse and consent options limited or unclear. Most did not provide supplementary support services tohelp users better understand or cope with the implications of test results. We provide recommendations for updating thepreconsumer transparency aspects of the HGC guidelines to ensure their fitness-for-purpose in this rapidly changing market.We also recommend improving coordination between relevant governance bodies to ensure minimum standards of transparency,quality and accountability. Although DTC-GT has many potential benefits, close partnership between consumers, industry andgovernment, along with interdisciplinary science input, are essential to ensure that these innovations are used ethically andresponsibly.
Original languageEnglish
JournalEuropean Journal of Human Genetics
Publication statusPublished - 3 May 2017

Keywords / Materials (for Non-textual outputs)

  • Direct to Consumer Testing
  • Ethics
  • Transparency
  • Good Governance
  • Genetics
  • Precision Medicine
  • Health Policy
  • Digital Health
  • eHealth
  • Data Ethics
  • Bioethics


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