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Diagnostic testing based on Next Generation sequencing (NGS) is increasingly used in patient care to clarify the cause of complex disorders. This has led to debate about whether the analysis of raw NGS data should be targeted to the clinical indication, or widened to include ‘actionable’ mutations or risk factors for other clinically relevant conditions beyond that indication. Whereas the European Society of Human Genetics has insisted that genomic analysis should be as targeted as possible, the American College of Medical Genetics and Genomics (ACMG) recommends to routinely analyse a whole series of actionable cardio- and oncogenetic risk factors in all patients having NGS in the context of clinical care. While this proposal ('opportunistic genomic screening'/OGS) has led to some debate in the USA, a European discussion still needs to be started. Also in the Netherlands, many clinicians seem to expect that OGS may significantly contribute to disease prevention/personalized medicine. However, this requires an ethical analysis in order to determine whether OGS is acceptable and if so under what conditions.
Aims and methods:
This project aims to contribute to ethically robust and sustainable guidance on the possible use of OGS in health care. Methods: conceptual analysis, qualitative stakeholder research (focus group discussions) among patient representatives, clinicians and policy experts, and normative analysis.
Funding and collaboration:
This project is funded by The Netherlands Organisation for Health Research and Development (ZonMw) together with the Foundation for Health Research of Achmea, a Health Insurance Company in the Netherlands (Stichting Achmea Gezondheidszorg). The postdoc on this project and her/his supervisors will closely collaborate with the researchers on the other projects in the larger programme (“Ethical and legal issues of personalised medicine ”) that will all start July 2018.
Location and supervision:
The postdoc working on this project will be based at the Department of Health, Ethics & Society of Maastricht University, in Maastricht, the Netherlands. His/her research will be incorporated in the Care and Public Health Research Institute (CAPHRI) at Maastricht. The project will be supervised by prof. dr Guido de Wert and dr Wybo Dondorp ( ethicists).
Candidate profile:
Completed PhD on a biomedical ethics topic. Proven interest in the ethics of genomics and personalized medicine. Experience with qualitative empirical research. Mastery of writing English for publication. Mastery of Dutch will be considered an advantage.
Start:
The start date of the project is ultimately medio July 2018.
Fixed-term contract: 23,5 months.
The terms of employment of Maastricht University are set out in the Collective Labour Agreement of Dutch Universities (CAO). Furthermore, local UM provisions also apply. For more information look at the website www.maastrichtuniversity.nl.
Maastricht University is renowned for its unique, innovative, problem-based learning system, which is characterized by a small-scale and student-oriented approach. Research at UM is characterized by a multidisciplinary and thematic approach, and is concentrated in research institutes and schools. Maastricht University has around 16,300 students and 4,300 employees. Reflecting the university's strong international profile, a fair amount of both students and staff are from abroad. The university hosts 6 faculties: Faculty of Health, Medicine and Life Sciences, Faculty of Law, School of Business and Economics, Faculty of Humanities and Sciences, Faculty of Arts and Social Sciences, Faculty of Psychology and Neuroscience.
CAPHRI provides high quality multidisciplinary research and teaching aimed at the improvement of the individual's quality of life and the population's health through innovation in public health and health care.
Research and teaching in the School are devoted to contribute to improvements in the area of public health and primary care. CAPHRI focuses on interventions in the chain of care, starting with prevention and primary care, and ending with aftercare and rehabilitation. The aim of the research is to get insight into the effectiveness of interventions, and their adequacy in meeting prospective patients' needs.
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