Johns Hopkins University School of Medicine conducted a pilot study of non-geneticist physicians. It explored, through in-depth interviews, the barriers and incentives to appropriate diffusion of genetic services into mainstream medicine and providers' willingness to participate in clinical studies that would assess the safety and effectiveness of emerging genetic technologies.
These interviews were designed to complement a survey of 3,000 physicians, conducted concurrently by the project director with a grant from the National Human Genome Research Institute. The goal of the survey was to establish the actual use of two genetic tests in adults: cystic-fibrosis-carrier screening and testing for genetic susceptibility to breast cancer.
Researchers selected a random sample of 998 obstetricians, pediatricians, family practitioners, and general internists in Maryland, Virginia, and Washington, D.C., from the American Medical Association Masterfile of Physicians. Some 222 responded, for a response rate of 22 percent. Eighty of the respondents agreed to be interviewed, and 60 interviews were conducted from April to August 1998.
The interviews revealed that:
- Insufficient data on clinical validity and clinical utility were foremost among the aspects of genetic testing that caused physicians to hesitate in using predictive genetic testing.
- Concerns about insurance discrimination in the absence of treatments for patients with positive test results also discouraged use.
- High cost and perceptions of inconvenience associated with obtaining genetic testing were also barriers to use of genetic testing.
- The primary inducement to testing — among physicians who had adopted testing — was interest on the part of the patient. Physicians repeatedly mentioned gene therapy, therapies tailored to specific genotypes, improved patient monitoring, and preventive care as positive outcomes of genetic discovery in the foreseeable future.
- 92 percent of the primary care physicians (PCPs) interviewed were willing to participate in practice-based research to assess the safety and effectiveness of new genetic tests, as were 30 percent of the PCPs who declined to be interviewed. While this is a significantly lower percentage than found among interviewees, the investigator asserts that it reflects a level of willingness that could make large-scale, collaborative, practice-based evaluation of genetic tests feasible. The PCPs stated that the opportunity to learn about emerging genetic technologies through participation in such a practice-based evaluation was a major incentive to genetics research participation.
The Robert Wood Johnson Foundation (RWJF) provided a $38,732 grant for the project.