Responsible patient advocacy: Perspectives from the alpha-1 foundation

Richard R. Sharp, Mark Yarborough, John W. Walsh, Marilyn Coors, Shirley Dennis, Eric Juengst, Jennifer Longstaff, Jon Merz, Ray Moseley, Connie Stockham, Richard Sharp, Debbie Waldrop, Adam Wanner, Rob Williams, Mark Yarborough

Research output: Contribution to journalReview articlepeer-review

4 Scopus citations


Patient advocacy groups play an increasingly prominent role in patient care and clinical research. To help manage some of the unique challenges associated with the involvement of patient-centered organizations in the delivery of medical services and conduct of clinical research, patient advocacy groups may wish to establish an ethics advisory board. Although hospitals and government agencies often adopt this approach, ethics advisory boards have not been widely used by patient advocacy groups. We report on the experiences of an ethics advisory board for a patient advocacy group actively involved in genetic testing and clinical research. Drawing on the experiences of this organization, we examine the potential advantages and limitations of this approach to navigating the complex moral terrain of contemporary medicine and biomedical research.

Original languageEnglish (US)
Pages (from-to)2845-2850
Number of pages6
JournalAmerican Journal of Medical Genetics, Part A
Issue number22
StatePublished - Nov 15 2008


  • Alpha-1 antitrypsin
  • Ethics advisory board
  • Health policy
  • Patient advocacy

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)


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