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News

09Jul 2018

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Launch national Servicedesk

Lancering nationale Servicedesk

Today the ELSI (Ethical, Legal and Social Implications) Servicedesk is launched. This online Servicedesk offers information and advice to researchers, health care providers, patient representatives, and policy makers about ethical, legal, and societal questions around research on personalised medicine.

Personalised medicine is on the rise. Increasingly, treatments are tailored to the individual patient with his or her unique characteristics and disease. There are high expectations of this goal-oriented approach. However, there are also many uncertainties, for instance about the right way to deal with large quantities of human tissues and genetic data. For instance: how can researchers guarantee good data protection and privacy? There are many ethical, legal, and societal questions about personalised medicine. The ELSI Servicedesk wants to contribute to their answers.

Frequently asked questions and list of resources

The ELSI Servicedesk consists of a (Dutch) website that offers information using a list of frequently asked questions in several categories, among others about consent procedures and data protection. Examples are: "Where can I find more information about the implications of the GDPR for observational medical research?". Furthermore, the website contains a list of resources, including relevant laws, regulations, and best practices, and a helpdesk where people can ask questions. Project employees and/or other experts, like ethicists or health lawyers, will answer questions. Moreover, the ELSI Servicedesk monitors and observes questions and knowledge gaps. From today onwards, the ELSI Servicedesk is fully operational.

Information and advice

Researchers, health care providers, patient representatives, and policy makers can visit the website (www.elsi.health-ri.nl) for information and advice about questions around personalised medicine research and implementation. They may ask questions (also in English) via the website (www.elsi.health-ri.nl), via e-mail (elsiservicedesk@health-ri.nl) or by phone between 1.30 and 4.00 PM Monday-Thursday (088-1167500). 

Background ELSI Servicedesk

The ELSI Servicedesk is coordinated from the Netherlands Cancer Institute by Susanne Rebers from the Marjanka Schmidt group, and is initiated by BBRMI-NL and Federa-COREON, financed by the Medicines research programme Personalised Medicine. This programme - a collaboration between ZonMw, Zilveren Kruis and the Dutch Cancer Society - wants to make a structural contribution to the health care of the future, in which each patient can count on personalised treatment. The research programme aims to secure the efficient implementation of personalised medicine in Dutch health care. There are activities in the field of data management, education and communication, and methodology of the valuation of predictive diagnostics to better focus the use of pharmacotherapy. The ELSI Servicedesk is part of Health-RI, the national infrastructure for research on health and personalised treatment.

More information:

Susanne Rebers: elsiservicedesk@health-ri.nl

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