Abstract
Genetics in health care is shifting, and responsibilities of genetic and nongenetic specialists are changing, requiring new guidance on how to adapt health care to advances in genetic services. This paper explores facilitators and barriers in the process of implementation of innovations in genetic health care. Furthermore, lessons learnt for optimizing development of new genetic services are summarized. Barriers and facilitators in transition processes were identified using mixed methods, including an online open-ended questionnaire among professionals and an international expert meeting. A multi-case study approach was used to explore recent experiences with innovations in genetic services in different phases of implementation. Barriers encountered in transitions in genetic service provision include the following: lack of genetic knowledge and skills among nongenetic health care providers, resistance to new divisions of responsibilities, and a need for more close collaboration and communication between geneticists and nongeneticists. Facilitating factors include the following: statutory registration of genetic specialists, availability of essential staff and equipment, and existence of registries and guidelines. Other challenges are experienced in the establishment of the appropriate legal and financial structures. A set of points to consider for genetic innovation processes is proposed, addressing, e.g., transition management and cooperation and communication strategies.
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Notes
Responses to questionnaire received from: Belgium, China, Finland, Germany, Israel, Lithuania, Norway, Spain, Sweden, Switzerland, The Netherlands, Turkey, and the UK. Background respondents: clinical genetics (n = 13), primary care, psychology, health sciences, molecular genetics, cytogenetics, sociology, anthropology, and health economics.
Expert meeting 25 participants from 11 countries: Czech Republic, Hungary, Finland, France, Iceland, Norway, Portugal, Spain, Sweden, The Netherlands, and the UK. Background participants: clinical genetics (n = 10), cardiology, genetic counselling (n = 10), health sciences/research (n = 5), oncology, neurology, primary care, psychology, and sociology.
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Acknowledgment
We wish to express our great gratitude to all participants in this study. The study was undertaken as part of the work of Unit 2, Work Package 8 of the EuroGentest2 Coordination Action 2011 project (funded by the European Commission Contract no: HEALTH-F4-2010-261469). T.R. also received funding from the Netherlands Genomics Initiative in the program of CSG Centre for Society and the Life Sciences and Centre for Medical Systems Biology. M.S. is funded by the NIHR Exeter Clinical Research Facility, University of Exeter.
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The authors declare no conflict of interest.
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Rigter, T., Henneman, L., Broerse, J.E.W. et al. Developing a framework for implementation of genetic services: learning from examples of testing for monogenic forms of common diseases. J Community Genet 5, 337–347 (2014). https://doi.org/10.1007/s12687-014-0189-x
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DOI: https://doi.org/10.1007/s12687-014-0189-x