On July 9, 2018, the Dutch ELSI (Ethical, Legal and Social Implications) Servicedesk was officially launched. This online Servicedesk (in Dutch) offers guidance and answers to the ethical, legal and societal questions around personalised medicine research faced by life sciences professionals, policymakers and patients.
Personalised medicine is strongly emerging. Treatments are more focused on the individual patient and his or her unique characteristics and disease. Expectations around this targeted approach are high. There are however many uncertainties, for example how to correctly deal with large amounts of human tissue and genetic data. How can researchers guarantee data protection and ensure privacy?
The ELSI Servicedesk helps to answer the questions of researchers, caregivers, patient advocates and policymakers. The website provides frequently asked questions with answers, and the opportunity to contact the helpdesk, where one of the ELSI experts answers questions.
The ELSI Servicedesk was initiated by BBMRI-NL and Federa-COREON, funded by the ‘Goed Gebruik Geneesmiddelen’ research programme Personalized Medicine. The Servicedesk is part of Health-RI, the national infrastructure for personalized medicine and health research.
Have a look at the ELSI Servicedesk website (in Dutch).