Abstract
Objectives: To explore the views of UK stakeholder group representatives about genetic tests for complex disease risks, and in particular the regulation of public access to genetic testing in order to assess the capacity of public consultations to represent the views of the public and representative groups accurately.
Methods: A purposive sample of 16 people was selected who had responded to a previous consultation by the Human Genetics Commission (a UK government body), or who were known to have relevant interests. Interviews were undertaken in June and July 2003, and recorded, transcribed and analysed thematically.
Results: Interviewees believed that genetic information is not inherently different from other health risk information, such as family histories or body mass indices. However, they tended to think that members of the public are unable to take a similarly informed view and that special regulation is therefore required. Individuals acting as representatives of organizations tended to express opinions more in favour of protective regulation and professionally controlled access to genetic testing for complex disease risks than those they held as individuals.
Conclusions: Stakeholder representatives' perceptions of public vulnerability may give rise to precautionary regulatory policies on genetic testing that limit public access to potentially valuable information. This could undermine other public health policies aimed at encouraging individuals to act independently to reduce risks to their health. 'Stakeholder consultations' may generate biased findings. Further rigorous research is needed to validate and explain the opinions and assumptions of individuals asked to contribute to such consultations.
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