ELSI

About ELSI

ELSI stands for Ethical, Economic, Legal and (Psycho)Social issues (in Genetics). ELSI research contributes to the strategic ELSI program within the department of Genetics. The ELSI program investigates the (potential) ethical, economic, psychological, social, and legal implications of (new, promising) genetic technologies, as well as methods of diagnostics, counselling (including eHealth), and screening.

The goal of the ELSI program is to explore, together with all stakeholders, whether and how the aforementioned techniques and technologies can be developed and implemented as quickly and responsibly as possible in order to benefit patients and the public. The program also serves to identify any gaps (e.g. financial or legal) that need to be addressed before responsible implementation can take place. Next to research activities, the strategic ELSI program is dedicated to moral deliberation, patient participation, and education.

Our projects:  more

Meet the ELSI team more

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News

• 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