Genetic Counseling And Testing Coverage In European Health Insurance Systems – Wellcome Trust Center for Human Genetics, Nuffield Department of Medicine, Medical Sciences Division, University of Oxford, United Kingdom
Background: Research in the field of genomics and genetics has developed in recent years and so has the demand of consumers who are increasingly interested in the genomic prediction of diseases and various traits. The purpose of this study was to identify genetic service delivery models, policies governing the use of genomic medicine, and measures to evaluate genetic services in the province of Quebec, Canada.
Genetic Counseling And Testing Coverage In European Health Insurance Systems
Methods: An ad hoc questionnaire was designed and published online in 2017 for health workers who have good knowledge or experience in BReast CAncer genes 1 and 2 (BRCA1/2), Lynch syndrome, familial hypercholesterolemia, inherited thrombophilia genetic testing, involved in policy planning or evaluation of genetic services. A quantitative quantitative analysis of the survey results was conducted.
The Global State Of The Genetic Counseling Profession
Results: Thirty professionals participated in the study. Delivery models are classified in five categories according to the main role of health professionals in the patient care pathway: i) geneticist model; ii) primary care model; iii) medical specialist model; iv) population screening program model; and v) the direct-to-consumer model. Barriers to genetic services are the coverage of genetic testing by publicly funded health care systems, the availability of qualified personnel, and the number of genetic centers. Regulatory oversight of the provision of genetic services appears to be inadequate.
Conclusion: The integration between genetics and the overall health system in Quebec is in its early stages. The current model of genetic services requires a good level of genetic knowledge by all medical specialists, collaboration between different health personnel, and redistribution of work. Proper implementation of genomics in health care can be achieved through education and training, proper regulatory oversight, genomics policy, and public awareness.
Personalized medicine has been adopted worldwide after the completion of the first sequence of the human genome in 2003 (Collins et al., 2003). This has led to the development of genetic tests used in routine clinical practice and research activities. Despite the rapid and promising development of genomic applications, there are concerns about how to ensure high standards of genetic services (Cassiman, 2005; Khoury et al., 2007; Scheuner et al., 2008; Liehr et al., 2017; Skirton, 2017). Of particular concern is the lack of quality criteria for the genetic service delivery model, which is a component of the Public Health Genomics (PHG) framework. The genetic service delivery model combines health services for individuals (ie, diagnosis and treatment of genetic disorders) and public health services and activities (ie, population-based screening, policy making, financing, information and education of health workers and the general population, assessment of service performance, and research) (Unim et al., 2017). Another concern is the early introduction in practice of application with insufficient evidence of analytical and clinical validity and clinical utility (Khoury et al., 2007; Scheuner et al., 2008).
The current organization of genetic services in Europe and in selected countries, namely the USA, Canada, Australia, and New Zealand, is the basis for the study by Personalized PREvention of Chronic Diseases (PRECeDI), the European multicenter project on personalized medicine (Unim). et al., 2017; Unim et al., 2019). This project focuses on the transfer of genomic discoveries from research to clinical and public health practice, underlining the barriers and facilitating factors for the implementation and the need for a specific genomic policy that can support the adoption of proper personal prevention into the health system. The PRECeDI consortium studies genetic tests with sufficient evidence of effectiveness and cost-effectiveness, such as tests for breast and ovarian cancer (HBOC), Lynch syndrome (LS), and familial hypercholesterolemia (FH) (Centers for Disease Control and Prevention (Centers for Disease Control and Prevention) .CDC)) and in familial thrombophilia (FT), which lacks evidence of clinical validity and utility (Evaluation of Genome Applications in Practice and Prevention (EGAPP) Working Group, 2011; Hickey et al., 2013). The analysis of genetic testing services and related treatment pathways identified in the literature enabled the identification and classification of genetic service delivery models in five categories according to the main role of health professionals in the patient pathway: i) genetic services led by geneticists model; ii) primary care model; iii) medical specialist model; iv) genetic services integrated into the population screening program model; and v) direct-to-consumer (DTC) model (Unim et al., 2019).
Pdf) Research Network: Eurogentest
Canada is one of the countries outside Europe included in the PRECeDI multicenter project. The core facilities of genetic services in Canada include genetic centers affiliated with universities or health institutions. Professional resources providing genetic services mainly include genetics staff (e.g. medical geneticists, genetic counselors) and other healthcare providers involved in providing genetic services as part of a multidisciplinary team (e.g. general practitioners (GPs), medical specialists, nurses, psychologists , and social workers) (Battista et al., 2012). Although there is literature on the delivery or organization of genetic services in Canada (Basran et al., 2005; Hanley, 2005; Little et al., 2009; Speechley and Nisker, 2010; Battista et al., 2012; Metcalfe et al., 2012; McCuaig et al., 2018), information about the province of Quebec is scarce (Lévesque et al., 2019). To provide an evidence base, this study aims to identify genetic service delivery models for four selected genetic tests (BRCA1/2, LS, FH, and FT), genomic policies and measures to evaluate genetic tests and related services. in the province of Quebec.
At the time of the survey, the legislative framework governing the delivery of genetic tests in Quebec and Canada was based on guidelines from local ethics committees, on voluntary accreditation and participation of genetic laboratories in external quality assessment (EQA) schemes, and certification. non-medical staff trained in genetics, such as those provided by the Canadian Association of Genetic Counselors (CAGC). The Genetic Non-Discrimination Act (GNDA) was adopted by the Canadian Parliament in May 2017, after the survey data collection was completed, and therefore was not addressed in the survey questionnaire. Since then, a Quebec Court of Appeal reference decision (December 2018) declaring the GNDA unconstitutional has been appealed to the Supreme Court of Canada and, today, the Act remains in effect. The GNDA makes it a criminal offense to require a person to undergo genetic testing, or to obtain access to, or compel a person to disclose the results of such a test as a condition for the provision of goods and services (Government of Canada, ). However, it provides an exception for the use of genetic test results by health professionals and researchers.
The study was conducted through an online survey available from January to April 2017. The survey targeted health workers, researchers with different backgrounds (e.g., clinical laboratory geneticists, physicians, etc.), and policy makers with knowledge and/or practical. experience providing at least one of the four selected genetic tests (BRCA1/2, LS, FH, and FT), assessment of genetic service delivery models, and genetic service policy planning in Quebec. To be considered eligible for the study, participants must currently practice in the province. Participants were contacted by email through the Quebec Applied Medical Genetics Network, the Quebec Association of Genetic Counselors, and the Canadian Association of Genetic Counselors. To increase the response rate, participants received an email reminder 6 weeks after the initial invitation email.
Ethical approval for this study was granted by the McGill University Faculty of Medicine Research Ethics Board (study code A01-E02-17A). The informed consent form was published as the first page of the online questionnaire. The form provides information about the purpose of the study, procedures, risks and benefits of participation, confidentiality, withdrawal, compensation, and the contact information of the research coordinator. Participants were informed that there were no foreseeable risks and that they could withdraw from the survey at any time. If they choose to participate, their answers can be published anonymously. Any identifying elements can only be viewed by the authors of the study and will be destroyed 5 years after the end of the survey. Recording of informed consent of participants was done by ticking the box indicating that they had read the consent form and agreed to participate in the study.
Types Of Genetic Tests Offered In Greece. (a) The Various Types Of…
Questionnaire items were created based on a literature review and through consultation with European experts in clinical genetics, evaluation of genetic services, and policy making. Further modifications of the questionnaire and translation from English to French were carried out to adapt the tool to the Quebec context.
Bilingual French-English questionnaires were distributed through the online platform Survey Monkey (SurveyMonkey). The first part of the survey [Supplementary Material (SM 1)] is the genetic service delivery model for the four selected genetic test providers (BRCA1/2, LS, FT, and FH). It targets healthcare workers (eg, medical geneticists, other medical specialists, and genetic counselors) who work in genetics services in a managerial role or who have direct contact with patients who need one of these genetic tests. The survey consists of the following sections: a) demographic and professional information (five questions, including open questions); and b) genetic service delivery model for BRCA1/2, LS, FT, and FH genetic testing (21 questions, including one
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