A seat at the table: Membership in federal advisory committees evaluating public policy in genetics

Objectives. This study examined who participates in federal government advi sory committees regarding public policy in human and medical genetics, what parties they represent, and to what extent the general public is meaningfu lly represented. Methods. Analysis focused on 7 federal government documents published from January 1990 to February 1995. Advisors were categorized into 4 groups base d on the professional affiliations that were listed in the publications. Af ter a search of several references and databases, the study examined whethe r these individuals also had other affiliations not listed in the governmen t publications, Results. Individuals whose principal affiliations were with academia (n= 32 , 44%) or industry (n= 19; 26%) represented nearly three fourths of the sam ple, followed by government employees (n= 13; 18%) and consumer advocates ( n = 8; 11 %). At least 16% of the advisors serving the federal committees, mostly members of academia, had a dual affiliation. Conclusions. These data indicate that the public has modest representation on key federal advisory committees making policy recommendations regarding human genetics technology and clinical practice and that there is ample roo m for additional public participation.