Attitudes of health care trainees about genetics and disability: issues of access, health care communication, and decision making

Abstract

Prior studies suggest that knowledge and attitudes of health care professionals influence patient communication and medical decision-making. To study this dynamic in the context of genetic disability, we developed a survey on health professionals' attitudes regarding disability and genetic screening and pilot-tested it on a sample of medical students, residents, and genetic counseling students (N=85). Despite minimal experience with disability or genetics, most respondents reported feeling comfortable dealing with genetics (59%) and disability (75%). The majority felt that disability caused significant suffering for both the person (51%) and family (64%), and that research should be directed toward preventing genetic disability (62%). Similar to prior literature, perceived "Quality of Life" was most often based on degrees of physical and cognitive functioning, pain, and social support. However, differences were found between genetic counseling trainees and other medical trainees in their relative emphasis of social versus medical issues in questions of disability and genetic testing, and these response patterns were associated with differences in the groups' priorities for offering information about social resources. Respondents agreed that access to genetic testing and information is personal and that testing should be available upon request for oneself (68%) and to a lesser degree for one's fetus (55%) or child (41%). However, the same individuals frequently stated that society should regulate access to such technologies. Although most felt that the patient and professional should jointly make such decisions on a case-by-case basis, it was also seen as appropriate for the health care professional to occasionally decline genetic testing. It seems appropriate that training and experience influence knowledge and attitudes. Therefore, it is critical to document knowledge and attitudes of various health care providers and trainees, including differences between various specialties, to improve educational interventions geared to this area.