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).
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.
The start date of the project is ultimately medio July 2018.
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.
The project forms part of the larger research programme “Ethical and legal issues of personalised medicine ”, for which an Ethics & Law Research Consortium has been established, in which researchers from five Dutch universities join forces (Amsterdam Academic Medical Center, Amsterdam VU Medical Center, University Medical Center Utrecht, Erasmus Medical Center Rotterdam, Maastricht University).
Further information about the project, the larger research programme, and the Consortium can be obtained from dr Wybo Dondorp at firstname.lastname@example.org
Applications consisting of a motivation letter and CV can be sent until April 30, 2018.
The first interview round will be held in the first week of May, in Maastricht.