Public advocacy and allocation of federal funds for biomedical research

Members of Congress and officials of the National Institutes of Health face heightened pressure from public advocacy groups seeking more funding for research on specific health conditions. In response, Congress and the Institute of Medicine have urged the NIH to create more opportunities for the public to participate in decision making on allocation of biomedical research resources. The ethical and policy implications of including advocates in the deliberations are explored, leading to the conclusion that public participation could contribute to more defensible decisions under three conditions: public participants are fairly selected and meaningful opinions are solicited; public participants look beyond their narrow constituencies to consider the health needs of the broader public; and NIH officials develop materials to assist participants with their deliberations.