Where do you get support with ELSI questions around data and biosamples?
This questionnaire aims to assess if the tools and platforms you use in relation to your ethical, legal and societal issues are informative for your daily work and which questions are yet to be answered.

This work is done in the context of CORBEL, which is an initiative of eleven new biological and medical research infrastructures (BMS RIs), which together will create a platform for harmonised user access to biological and medical technologies, biological samples and data services required by cutting-edge biomedical research. CORBEL will boost the efficiency, productivity and impact of European biomedical research.

For further questions, please contact michaela.th.mayrhofer@bbmri-eric.eu.


shared services for life sciences
Your affiliation and role: Is your institute or organisation involved in any of the research infrastructures collaborating in CORBEL? *
If you answered yes above, which research infrastructure? (Leave blank if not applicable)
What is your role (e.g "I am a postdoctoral researcher, my work involves the interpretation of clinical trial data" or "I am a software engineer involved in the provision of data infrastructure for sensitive human data")? *
Your answer
Do you *
If you are involved in providing or using human samples or data, are these shared accross national borders? *
Does your work raise so-called ELSI (ethical, legal, societal) issues? *
What are the main fields of concern for you? *
Highly important
Not important
data protection
ethics committee approval
writing/composing informed consent forms and/or informative sheets
obtaining informed consent from research participants
administrative issues
contractual matters (e.g. MTA)
technical issues around data security and access control
societal perceptions
dissemination and public outreach
access to informed consent templates
Briefly describe why these are of concern for you: *
Your answer
Which other ELSI issues - not listed above - are of concern for you? *
Your answer
In relation to ELSI issues *
Please elaborate your answer above (e.g. "I ask Dr. Google, because I find Informed Consent templates I need fast on a case by case basis."):
Your answer
If you have someone with ELSI expertise, please describe who they are and what they do here: *
Your answer
Do you use templates (please tick the respective box if applicable)
What is the source of these templates?
Do you use any tools and/or online ELSI resources to support your work? If yes, please describe them briefly: *
Your answer
Do these tools fullfill your requirements? *
What is missing or what would you hope to get from any tools? (Please indicate any ideas irrespective of what you might think would be realistic!) *
Your answer
If you don't use tools and/or online resources to support your work, why so? *
Your answer
Do you think that an easily accessible (open source) tool could support you? *
What would be your key requirements of such a tool? *
Your answer
What are the most urgent questions you would ask someone who is in a position to give you guidance in any given ELSI area? *
Your answer
What would you like to tell people trying to offer widely available and accessible ELSI support? *
Your answer
Who completed this survey? (Please add your e-mail address - leave blank if you would like to stay anonymous)
Your answer
May we contact you with follow-up questions?
Thank you for your time! :)
The results of this questionnaire will help us to capture your needs as a user of research infrastructures on ELSI support.
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