On 9 July 2018, the ELSI (Ethical, Legal and Social Implications) Servicedesk of Health-RI was officially launched. This online servicedesk offers guidance and answers to the ethical, legal, and societal questions around personalised medicine research faced by life sciences professionals, policymakers, and patients.
- Go to the ELSI Servicedesk website.
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 policy makers. The website provides answers to frequently asked questions and contact details of the helpdesk. The servicedesk was initiated by BBMRI-NL and Federa-COREON, funded by the ‘Goed Gebruik Geneesmiddelen’ research programme Personalised Medicine. The servicedesk is part of Health-RI, the national infrastructure for personalised medicine and health research.