General Practitioners and Predictive Genetic Testing for Late-Onset Diseases in Flanders: What Are Their Opinions and Do They Want to Be Involved?

Abstract

Objective: Investigate the attitudes of general practitioners (GPs) concerning predictive testing for late-onset diseases, as well as the perception of their own role in this context. Methods: 356 GPs received mail questionnaires with telephone pre-notifications and reminders. Results: The questionnaire was returned by 60% (n = 215). The GPs’ attitudes toward predictive testing for breast cancer, thyroid cancer, Alzheimer disease and Huntington’s disease were influenced by the availability and the type of preventive and therapeutic options, the age of onset of the disease as well as by ethical concerns. Regarding a possible task for GPs, most of the GPs focussed on gate-keeping aspects, such as providing information and making referrals. Conclusion: The GPs were supportive of a limited role for general practice in predictive testing. Genetic education for GPs is needed, with attention to non-directiveness and the characteristic psychosocial and ethical implications of this particular type of genetic testing.

Primary-care providers’ perceived barriers to integration of genetics services: a systematic review of the literature

“…35 PCPs also mentioned that genetic testing may have unanticipated findings that are secondary to the intent of ordering testing and that may cause distress among adults and minors regarding adult-onset disorders. 35,36 The second most common ELSI barrier (n = 15 citations in 15/38 studies) was the fear of social or insurance discrimination for their patients as a result of their genetic information. 37 Freedman et al 17 found that more than 80% of 1,251 US PCPs surveyed thought that patients with positive genetic testing results were at risk for insurance discrimination.…”

“…11,15 PCPs also reported being unclear about their role in providing genetics services (n = 15 cited in 15/38 studies). In some instances, PCPs felt that it was not their role to deliver genetics services 8,36,39 or they simply were unclear about their role. 9,12-14,32,37 Additional studies described PCPs' perceptions that "genetics is for specialists" 19,27,29,40 and that the management of genetic conditions requires complex high-level knowledge available only from a specialist.…”

“…14,31 PCPs reported that their patients' accuracy when providing FH information was a barrier, 16,21,27,28 as were language and culture barriers when discussing FH and genetics with patients. 14,21,22,27 Evidence A total of nine barriers related to current scientific evidence behind use of genetics services were identified in the studies (Supplementary Figure S4 online); the most commonly cited barrier was a perceived lack of therapeutic interventions available after the identification of increased risk (n = 11 cited in 11/38 studies) 24,27,28,36,39 and the notion that patient management would not change as a result of genetic assessment. 4,7,11,23,25,27 The second most frequently cited evidence barrier reported was the lack of guidelines and insufficient evidence to support risk assessment (n = 10 cited in 10/38 studies).…”

The Educational Needs and Professional Roles of Canadian Physicians and Nurses regarding Genetic Testing and Adult Onset Hereditary Disease

“…Although the clinical utility of predictive testing has yet to be rigorously evaluated, health providers in all settings need to be informed of genetic issues [1, 2, 3]. Surveys in the United States and other parts of the world indicate that physicians in general practice have limited knowledge of genetics and want only to play a minor role in providing genetic service [4, 5]. In Canada there is emerging evidence that health providers appear willing to expand their roles in providing genetic services [6, 7].…”

Knowledge of and Attitudes about Alzheimer Disease Genetics: Report of a Pilot Survey and Two Focus Groups

“…Parallel efforts are under way to educate physicians, particularly primary care physicians, who are increasingly likely to be involved in counseling patients about AD risk as AD awareness grows and demographic shifts continue. Physicians also have limited knowledge of genetics and weak quantitative skills [44,45,46], plus a limited understanding of the potential risks and benefits of genetic testing [1, 13,46,47,48]. Continued efforts in this area will be critical as medicine moves further into the genomic era.…”