The role of patient advocacy organizations in shaping genomic science

Pei P. Koay, Richard R. Sharp

Research output: Contribution to journalReview articlepeer-review

22 Scopus citations


Patient advocacy organizations (PAOs) are nonprofit groups that represent patients and families affected by a significant medical condition or disease. We review some of the different approaches that humanities and social researchers use to study PAOs. Drawing on this recent scholarship, we describe some contemporary patient groups and explore how PAOs can collaborate with biomedical researchers to advance genomic science. We highlight research that aims to describe how PAOs are contributing to multiple aspects of biomedical research, including study design, definition of research goals, data collection and analysis, dissemination of results, and research funding. We also describe several challenges that genomic researchers may encounter in collaborations with PAOs. Throughout our review, we focus on the manner in which new PAO roles challenge traditional boundaries between researchers and subjects, thereby redefining the relationship of patients to science. We consider how this shift may affect our view of scientific collaborations and impact genomic researchers in the future.

Original languageEnglish (US)
Pages (from-to)579-595
Number of pages17
JournalAnnual Review of Genomics and Human Genetics
StatePublished - Aug 2013


  • Biomedical research
  • Clinical trials
  • Lay expertise
  • Participatory research
  • Patient activism
  • Patient groups

ASJC Scopus subject areas

  • Molecular Biology
  • Genetics
  • Genetics(clinical)


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