18 July 2019
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The first ELSI Servicedesk Anniversary

Guidance and answers on ethical, legal and societal issues that research on personalized medicine raises. That is what the ELSI Servicedesk promised to deliver, when this service was launched in July 2018.

Since then, the platform already processed 47 questions from the medical research community. Some 5000 visitors have used the servicedesk. Researchers know how to find the ElSI Servicedesk better and better. The number of users is still rising, now counting over 500 visitors a month.   

In Personalized or Precision medicine, treatments are more focused on individual persons or patients and their unique characteristics and disease. Expectations are high, but there are many uncertainties. Moreover, there are numerous ethical, legal and societal implications. For example, regarding handling large amounts of human tissue and genetic data: how can researchers guarantee data protection and ensure privacy? The ELSI Servicedesk helps to answer questions on these topics. 

In an interview published on the ZonMw website, Susanne Rebers, project lead of the ELSI servicedesk, outlines how the servicedesk works.  “If we get a question that we can answer quickly within our operational team, the questioner receives an answer within a few days. More complex questions are passed on to an expert in our team. Our team contains all kinds of disciplines, such as legal experts, ethicists. clinical geneticists, radiologists and patient representatives. We will find external expertise if we don’t have the necessary expertise ourselves.”  The ELSI Servicedesk staff transforms the expert response to the questioner into a more general advice for publication on the website. This way, people with similar questions can profit from it. Rebers: “We strive for harmonized interpretations and want to prevent people investing much time and effort in re-inventing the wheel.”  

The ELSI Servicedesk website is written in Dutch and designed to answer questions from researchers, caregivers, patient advocates and policy makers. Questions can be asked in English as well.  

A full interview with Susanne Rebers and Margo van Reen on ELSI (in Dutch)  can be found here