Alternatives to project-specific consent for access to personal information for health research: Insights from a public dialogue
2008

Public Dialogue on Health Research Consent

Sample size: 98 publication Evidence: moderate

Author Information

Author(s): Donald J Willison, Marilyn Swinton, Lisa Schwartz, Julia Abelson, Cathy Charles, David Northrup, Ji Cheng, Lehana Thabane

Primary Institution: McMaster University

Hypothesis

What are the public's values regarding consent for the use of personal health information in research?

Conclusion

No single approach to consent was favored by the majority, highlighting the need for a flexible consent mechanism.

Supporting Evidence

  • Broad opt-in consent was the most supported approach in abstract discussions.
  • No single consent approach was preferred across specific research scenarios.
  • Participants expressed a desire for personal controls over their health information.

Takeaway

People want to have a say in how their health information is used for research, but there isn't one way that everyone agrees on.

Methodology

Conducted seven public dialogues with 98 participants across Canada, using questionnaires to assess consent preferences.

Potential Biases

Selection bias due to low participation rates and demographic differences.

Limitations

Participants were more educated and predominantly female compared to the general population, which may introduce bias.

Participant Demographics

Participants were 59% female, with a higher level of education than the general population.

Statistical Information

P-Value

0.048

Statistical Significance

p<0.05

Digital Object Identifier (DOI)

10.1186/1472-6939-9-18

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