title: Motivations of Patients with Diabetes to Participate in Research.
abstract: BACKGROUND
  Research on the motivations of research participants has focused primarily on vulnerable populations at risk of exploitation, and there is little research on the motivations and reasons of general medical patients participating in research. Given a significant increase in research studies recruiting participants with diabetes, we sought to better understand the motivations of patients with diabetes considering a general medical research protocol.
  
  
  METHODS
  The analyses presented here compare the reasoning and willingness to participate in a hypothetical research study of medically ill subjects (patients with diabetes, n=51) with non-ill (n=57) subjects. Responses on the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) were correlated with demographic variables and scores on the Mini-Mental State Examination (MMSE) and Short-Form-36 (SF-36).
  
  
  RESULTS
  Overall, 44% of the group with diabetes and 56% of the comparison group indicated a willingness to participate in the research study. The reasons diabetic and comparison groups offered for willingness or unwillingness to participate in research did not differ significantly. 75% mentioned reasons related to treatment, 63% altruism; none mentioned money. Of those patients with diabetes who would not participate in research, 94% cited risk, and 89% expressed an aversion to research.
  
  
  CONCLUSIONS
  The present study suggests that when research is not related to their diagnosis, persons with diabetes do not differ significantly from non-ill comparison subjects in their motivations to participate in research. Given the similarity of our subjects' motivations to those of other medically ill populations, it may be that investigators can now focus more closely on the decision-making characteristics of their patients involved in clinical research rather than their diagnoses.
authors.affiliation: New Mexico Veterans Affairs Health Care System - Ethics 1501 San Pedro Dr. SE University of New Mexico Albuquerque, New Mexico 87108.
authors.forename: Cynthia
authors.initials: C
authors.lastname: Geppert
authors.affiliation: University of Massachusetts Medical School.
authors.forename: Philip
authors.initials: P
authors.lastname: Candilis
authors.affiliation: University of Massachusetts.
authors.forename: Stephen
authors.initials: S
authors.lastname: Baker
authors.affiliation: University of Massachusetts Medical School.
authors.forename: Charles
authors.initials: C
authors.lastname: Lidz
authors.affiliation: Columbia University.
authors.forename: Paul
authors.initials: P
authors.lastname: Appelbaum
authors.affiliation: University of Massachusetts Medical School.
authors.forename: Kenneth
authors.initials: K
authors.lastname: Fletcher
keywords: Bioethics; Diabetes; Empirical ethics; General medical research; Research participation; Research subject motivations