The UK-Japan genetics and genomic research network
Lead Research Organisation:
Cardiff University
Department Name: School of Medicine
Abstract
The acceptance and incorporation of genetic and genomic medicine into healthcare systems has taken different pathways in different countries. While much is known about the incoporation of these technologies into individual healthcare systems, little cross-national research work has been conducted. By developing a cross national research network, we set out to address this gap in our knowledge. By comparing the way genetic and genomic medicine has been incorporated into healthcare systems in two developed, but culturally quite different, countries (the UK and Japan), we aim to improve our understanding of the variety of ways in which this kind of medicine is practiced.
This research is particularly timely as genomic medicine is being adopted in both countries, making a comparison of the practices and structures that have built up through genetic medicine and taken over to genomics all the more important. This network will provide researchers with the space in which to develop ways of understanding and comparing the incorporation of genetic and genomic medicine into healthcare systems in an international context, providing a setting in which researchers can develop research proposals and publications that focus on how to conduct these comparisons.
Over the longer term, this network will allow researchers to learn from experiences in different cultures, providing researchers and clinicians with opportunities to use national comparisons as sources of information with which to inform the development of these services and to advise policy makers.
This research is particularly timely as genomic medicine is being adopted in both countries, making a comparison of the practices and structures that have built up through genetic medicine and taken over to genomics all the more important. This network will provide researchers with the space in which to develop ways of understanding and comparing the incorporation of genetic and genomic medicine into healthcare systems in an international context, providing a setting in which researchers can develop research proposals and publications that focus on how to conduct these comparisons.
Over the longer term, this network will allow researchers to learn from experiences in different cultures, providing researchers and clinicians with opportunities to use national comparisons as sources of information with which to inform the development of these services and to advise policy makers.
Planned Impact
The network will stimulate academics to work closely together to develop a shared research agenda. Researchers who have been focusing on these themes in their own countries will learn about the situation in comparable jurisdictions, looking for ways of describing and evaluating practices and processes used in both places. Specific issues will need to be addressed, such as to identify comparable clinics; how researchers can understand and interpret the nuances of cultural dynamics at play in a consultation; how to understand the differences and similiarites in the cultures and processes that structure the organisation of genetic services. In this way, the network will cause researchers to develop ways of understanding and researching the incorporation of the new genetic technologies into healthcare systems in a comparative context. This work will be developed and disseminated through papers in academic and professional journals. Outputs from these explorations will have some effect on our self-awareness as researchers and healthcare professionals.
The network will provide funding for researchers to work together to develop a research proposal. These working relationships will develop through the process of writing the proposal, and the subsequent research work, providing the bedrock for a long term future of this international research network. The network may grow or transform, but develop out of these initial meetings and workshops.
The research proposal produced as a result of this network will itself have impacts on research and on healthcare. A project that explores how genetic technologies are incorporated into healthcare systems and communicated to patients in an international comparative context, will produce reflections on underlying and unacknowledged dispositions, attitudes and practices. By making researchers and healthcare professionals more aware of their own background assumptions, the project will bring about reflection and learning among practitioners and healthcare providers.
The network will have a direct bearing on the development of the research career of an early career researcher. Dr Kate Burke will take up a role as an international visiting research fellow in the latter phase of the project. As a clinician (Paediatrician) who is currently completing a PhD on the social effects of genetic technologies in neo-natal care, Dr Burke is perfectly placed to work with colleagues interested in the practical effects of genetics on the work of a neo-natal care unit in Japan. Hence, the network funds will provide an early career researcher with the opportunity to develop a research career in the direction of international comparative research.
The network will provide funding for researchers to work together to develop a research proposal. These working relationships will develop through the process of writing the proposal, and the subsequent research work, providing the bedrock for a long term future of this international research network. The network may grow or transform, but develop out of these initial meetings and workshops.
The research proposal produced as a result of this network will itself have impacts on research and on healthcare. A project that explores how genetic technologies are incorporated into healthcare systems and communicated to patients in an international comparative context, will produce reflections on underlying and unacknowledged dispositions, attitudes and practices. By making researchers and healthcare professionals more aware of their own background assumptions, the project will bring about reflection and learning among practitioners and healthcare providers.
The network will have a direct bearing on the development of the research career of an early career researcher. Dr Kate Burke will take up a role as an international visiting research fellow in the latter phase of the project. As a clinician (Paediatrician) who is currently completing a PhD on the social effects of genetic technologies in neo-natal care, Dr Burke is perfectly placed to work with colleagues interested in the practical effects of genetics on the work of a neo-natal care unit in Japan. Hence, the network funds will provide an early career researcher with the opportunity to develop a research career in the direction of international comparative research.
| Description | Project report and dissemination |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dr Doheny and Professor Clarke presented a report on their research visit to Japan to members of the genetics service at the University Hospital of Wales, Cardiff. This was an opportunity to talk more broadly about the differences in the location of genetics given the cultural and clinical arrangements in the UK and Japan. During this seminar, we described some of the general background features that bring about differences in both countries, and described some of the more specific differences used in clinical management of cases in the two countries. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Site visit, Bristol, Wales |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | During their visit, our from colleagues Japan (Professor Meada, Dr Kondo, Dr Kawashima and Ms Horike) spent a day touring genetics services in Bristol and sitting in on a standing meeting in which the service discusses emerging issues and cases. This visit added to the visitors' sense of the role and importance of clinical genetics in the UK, how clinical genetics services manages difficult and sensitive cases, and how these clinical services work with laboratory services. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Site visit, Cardiff, Wales |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | To progress this project, four of our Japanese colleagues conducted site visits and participated in Seminars in Cardiff in September of the same year. These colleagues (Professor Meada, Dr Kondo, Dr Kawashima and Ms Horike) participated in a visit to the clinical genetics service, and undertook tours of the laboratory services and the Wales Gene Park in Cardiff. Later, they participated in seminars with colleagues from Cardiff University in which more substantive discussions were held on the project themes and methods of mutual interest that could form the core of a collaborative research project. These areas include the role of stigma in genetic disorders, the conduct of difficult conversations about fetal anomalies following a fetal anomaly scan and sensitive discussions with genetic counsellors about predictive genetic tests. The participants all found this a useful seminar in which much progress was made on the themes and methods used in a research project. The group agreed to continue conversations by email in which decisions may be made about the central topic, methods and collaborators, and to develop a research team. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Site visit, Kanagawa Children's Hospital, Tokyo, Japan |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | During our visit to Japan, Dr Doheny, Professor Clarke and Professor Ecob Newbury visited the Kanagawa Children's Hospital. This visit included meetings with Professor Kurosawa and his colleagues during which Professor Kurosawa brought us on a tour of the facilities and laboratories, and Professors Clarke and Newbury Ecob presented on genetics in the UK and on the 100,000 genomes project. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Site visit, Osaka Women's and Children's Hospital, Osaka, Japan |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The team (Dr Doheny, Professor Clarke and Professor Ecob Newbury) spent a day attending meetings and seminars at the Osaka Women's and Children's Hospital, learning about the work of the hospital, and developments in Japan's Initiative on Rare and Undiagnosed Diseases (IRUD) which is largely conducted at a research institute managed by Dr Okamoto at this hospital. While here, the team learned more about the place of genetics in both clinical and research work in Japan, and about the management of ethical issues arising from genomic research (i.e., issues surrounding secondary findings). Learning about IRUD was quite important as there are clear overlaps between IRUD and the 100,000 genomes project in the UK. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Site visit, Rikkyo University, Tokyo, Japan |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | Professor Hiroki Maeda at Rikkyo University kindly organised an afternoon of seminars in which we (Dr Doheny, Professor Clarke and Professor Ecob Newbury) presented on aspects of our work. This was a major afternoon of seminars in which five papers were presented on research that may contribute to the identification of research themes and methods that may be used in collaborative social scientific research projects. Of particular interest was the large-scale genomic testing projects under development in both countries, the use of video recording as an ethnographic method in Japan and the use of conversation analysis in both countries. The use of these data gathering and data analysis methods provided scope for positive development of a collaborative research project. However, the very different practices used in relation to genetics in Japan has prompted us to reflect on the possibility of comparing experience in this area, and to think more about developing collaborations around neonatal intensive care. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Site visit, Saitama Children's medical centre Japan |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dr Doheny, Professor Clarke and Professor Ecob Newbury visited a paediatrics department in Saitama to learn more about the use of genetics in the care of children in Japan. The visit included participating in seminar presentations on genetics in the UK and introductory seminars on the services provided by the department, as well as a tour of the facility. Of particular interest for ourselves was the way in which neonatologists manage the care of seriously ill infants in the context of a society using a policy on the termination of a pregnancy that is more limited in scope than that used in the UK. The research team found this a particularly illuminating visit prompting reflection on forming a research project that compares neonatal care in the UK and Japan. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Site visit, Shikoku Medical Centre, Shikoku, Japan |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The team conducted a two day visit to the Shikoku Medical centre meeting colleagues in genetics, neonatology, obstetrics and the education facility for children staying at the hospital along with the facilities for children with special needs. The objective was again to learn more about the place of genetics in clinical practice in Japan. The visit illustrated the effect of the policy on the termination of pregnancy on medical practice in Japan, and how clinical genetics remains an underdeveloped area. But the visit also provided us with really valuable insights into the support that Japanese healthcare providers provide to children with complex and special needs. The team had interesting conversations with various members of staff on the ethics of providing care to seriously ill neonates. |
| Year(s) Of Engagement Activity | 2019 |