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
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 (email@example.com) 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.
Susanne Rebers: firstname.lastname@example.org