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Achieving online consent to participation in large-scale gene-environment studies: a tangible destination
  1. Fiona Wood1,
  2. Jenny Kowalczuk2,
  3. Glyn Elwyn1,
  4. Clive Mitchell1,
  5. John Gallacher1
  1. 1Department of Primary Care and Public Health, School of Medicine, Cardiff University, Neuadd Meirionydd, Heath Park, Cardiff, UK
  2. 2Modus Consulting, Cardiff, UK
  1. Correspondence to Fiona Wood, Lecturer, Department of Primary Care and Public Health, School of Medicine, Neuadd Meirionydd, Heath Park, Cardiff, UK; wood{at}cardiff.ac.uk

Abstract

Background Population based genetics studies are dependent on large numbers of individuals in the pursuit of small effect sizes. Recruiting and consenting a large number of participants is both costly and time consuming. We explored whether an online consent process for large-scale genetics studies is acceptable for prospective participants using an example online genetics study.

Methods We conducted semi-structured interviews with 42 members of the public stratified by age group, gender and newspaper readership (a measure of social status). Respondents were asked to use a website designed to recruit for a large-scale genetic study. After using the website a semi-structured interview was conducted to explore opinions and any issues they would have. Responses were analysed using thematic content analysis.

Results The majority of respondents said they would take part in the research (32/42). Those who said they would decline to participate saw fewer benefits from the research, wanted more information and expressed a greater number of concerns about the study. Younger respondents had concerns over time commitment. Middle aged respondents were concerned about privacy and security. Older respondents were more altruistic in their motivation to participate. Common themes included trust in the authenticity of the website, security of personal data, curiosity about their own genetic profile, operational concerns and a desire for more information about the research.

Conclusions Online consent to large-scale genetic studies is likely to be acceptable to the public. The online consent process must establish trust quickly and effectively by asserting authenticity and credentials, and provide access to a range of information to suit different information preferences.

  • Genetics
  • epidemiology
  • informed consent
  • on-line systems
  • qualitative research
  • informed consent
  • genetic screening/testing

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Footnotes

  • Funding This study was funded by the National Epidemiology Wales Project Grant from the Welsh Assembly Government.

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the Cardiff University Medical and Dental Schools Ethics Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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