The ELSI research programme aims to provide the evidence base for offering clinical genetic services to patients using new techniques and innovations as fast and responsibly as possible. Our mission is to build an interdisciplinary research group of researchers experienced in studying the ethical, legal, social impact (ELSI) of changes in health care as well as specialists in the fields of genetics and other medical specialties currently involved in Mendelian genetics. The group will aim at fast and continuous translation of genetic research findings into optimal clinical applications in the above-mentioned fields. We aim at innovation and improvement of clinical genetic patient care, as well as the application of new genetic knowledge in other medical specialties, primary care and in genetic population screening. Innovation and improvement of clinical genetic patient care not only consists of the 42 development or adjustment of genetic counselling techniques but also addresses the process and organization of genetic care and the related societal aspects, e.g. informed consent procedures.
Our projects: more
Meet the ELSI team more
Our publications more
- Addressing the ethical issues raised by synthetic human entities with embryo-like features. John Aach, Jeantine Lunshof, Eswar Iyer and George M Church. 2017 March in Elife DOI: 10.7554/eLife.20674. More information here.
- Population-based preconception carrier screening: how potential users from the general population view a test for 50 serious diseases. Plantinga M. et al. European Journal of Human Genetics, open access, 2016; doi: 10.1038/ejhg.2016.43
- Telegenetics use in presymptomatic genetic counselling: patient evaluations on satisfaction and quality of care. Otten E. et al. European Journal of Human Genetics 2015. doi: 10.1038/ejhg.2015.164. Abstract
- Telemedicine uptake among Genetics Professionals in Europe: room for expansion. Otten, E. et al. European Journal of Human Genetics 2015. doi: 10.1038/ejhg.2015.83. Abstract
- Paper on the autonomy of the patient: Maximising the efficiency of clinical screening programmes: balancing predictive genetic testing with a right not to know. European Journal of Human Genetics (2015) 23,1124–1128; doi:10.1038/ejhg.2014.269; Open Access.
- The UMCG has awarded a Healthy Ageing Grant of €50,000 (December 2014) for a pilot study into the preconception genetic screening of 100 couples wanting to start a family. Couples in the northern Netherlands region will be asked to participate by their family doctor. The pilot study will be conducted Spring 2015 and cover a large number of rare congenital conditions. Project leader: Prof. Irene van Langen more
Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature.
Otten, E. et al. Genetics in Medicine 2014. doi: 10.1038/gim.2014.173. Abstract
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