The involvement of patient-advocacy organizations in clinical research

The increasingly prominent role of patient-advocacy groups in clinical research raises several ethical issues. Since many patients chose not to affiliate themselves with advocacy organizations, clinical researchers and funding agencies that work exclusively with patient-advocacy groups in designing new clinical trials may not have access to the full range of patient attitudes about research. In addition, individuals who chose to participate in patient-advocacy groups may view clinical research more favorably than other patients, raising the possibility that advocacy organizations foster an overly optimistic sense of the potential benefits of research. Finally, patient-advocacy groups often receive support from drug and device manufacturers, raising issues about potential conflicts of interest.

As a first step toward understanding how patient-advocacy groups and clinical researchers can best work together, members of the Department of Bioethics are studying the emergence of patient-advocacy organizations and their contributions to clinical research. These results will be of much interest as lay advocates continue to reshape the moral landscape of medicine.

This research supported in part by:

The Alpha One Foundation

For more information contact:

Dr. Richard Sharp, Ph.D.

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