ELSI research team

Core team

PI/Head of Program Prof. Irene van Langen (Clinical Genetics)
Dr. Els Maeckelberghe (Ethics)
Prof. dr. Anneke Lucassen  (Visiting professor, Bijtel chair 2014-2016)
Prof. Adelita Ranchor (Psychology)
Dr. Erwin Birnie (Economics, Epidemiology)
Dr. Mirjam Plantinga (Economics, Ethics, Sociology)
Dr. Imke Christiaans (Clinical Geneticist)

Researchers

Reinder Broekstra (Ethics)
Karin Nieuwhof  (SPECIFO evaluation trial follow-up by a specialized cardiogenetic nurse)
Juliette Schuurmans, Joint PhD ELSI/CELS, (ELSI aspects of implementing preconception screening)
Jan Voorwinden (ELSI aspects of communication in genetic counselling)
Julia El Mecky, Joint PhD ELSI/CELS (ELSI aspects of next-generation sequencing and handling of incidental findings)
Nina van den Berg, junior researcher (potential societal aspects of implementing population-wide carrier screening)
Lieke van den Heuvel, external PhD/researcher (family communication in hereditary disease & implications of population-wide carrier screening)

Pictures and profiles of the ELSI team

Colleagues
Prof. dr. Maarten van den Berg (Cardiology, Cardiogenetics)
Prof. dr. Marjolein Berger (General Practice)
Prof. dr. Rudolf de Boer (Experimental Cardiology, Cardiogenetics)
Prof. dr. Nine Knoers (Genetics, patient participation, outcome measures, Ethics)
Prof. dr. Conny van Ravenswaaij-Arts (Clinical Genetics, patient participation)
Dr. Angela Fenwick (associate Professor in Medical Ethics and Education, CELS Southampton)
Dr. Kate Lyle (Sociologist, CELS Southampton)
Dr. Paul van der Zwaag (Clinical Genetics, legal aspects)
Drs. Menno de Bree (Ethics UMCG, moral deliberation)
Tanya Halbersma, MSc (Clinical Genetics, recontacting)
Wil Hoek (patient representative Genetics)

Collaborations

• CELS explores the application of ethics and law in clinical practice. Anneke Lucassen, team leader of CELS, held the Bijtel chair at the University of Groningen from 2014-2016. Currently, Lucassen is affiliated to the department of Clinical Genetics at the UMCG. As part of our collaboration with CELS, we set up a program for joint PhD research. Juliette Schuurmans and Julia el Mecky are two of our joint PhD students.
  http://www.southampton.ac.uk/cels/index.page
• Linköping University and the University of Maastricht https://liu.se/(...)of-medical-screening The project “Preconception screening: experiences and considerations” is a collaborative project between Linköping University, the University of Maastricht, and the University Medical Centre Groningen (UMCG). It concerns a qualitative research project into the experiences and considerations of couples who have received carrier screening. The project also looks into the considerations of couples who have decided not to take the test. Interviews with general practitioners and other stakeholders involved in carrier screening in the Netherlands are also carried out as part of the research. https://www.umcg.nl/(...)ragerschapstest.aspx
• Consortium carrier screening Netherlands (Groningen ELSI / Amsterdam Genetics/Community Genetics (Henneman, Lakeman, Cornel) / Maastricht Ethics (Dondorp, Van der Hout, De Wert).
  https://www.zonmw.nl/nl/actueel/nieuws/detail/item/onderzoek-naar-preconceptionele-dragerschapsscreening-in-nederland-de-gevolgen-het-maatschappelijk/

Students/Internships

The ELSI research team has opportunities for short-term researchers, interns and trainees. The team is always looking for enthusiastic students who want to perform research on ELSI aspects of genetics. In recent years, students with very different backgrounds (in medicine, psychology, human technology, science business and policy, and communication sciences for example) have been trainees in the ELSI group. Contact Dr. Mirjam Plantinga (m.plantinga umcg.nl) for more information.

At the moment we have a student internship available. We are looking for an enthusiastic student who will do research for their thesis on whether the form and content of genetic counseling (still) matches the needs of the patients. For more information, see the vacancy on the UMCG website here.

See also student reports on their internships in the Dept of Genetics.