Who is this course for?

This tutorial is for anyone who would like to learn about the Ethical, Legal and Social Implications (ELSI) of human cohort data.

The tutorial was developed by EMBL Bioethics Services, which provides a wide range of ethics services to internal and external stakeholders in the areas of Ethics Governance, and Ethics Training & Engagement. We offer guidance on ethical issues arising in research, manage the applications to our internal ethics committees, coordinate training (the Ethics Academy), deliver an external engagement programme on the ethical, legal and social implications of EMBL’s research (Science & Society), and run an internal network on ethics and research facilitation (the Research Ethics, Integrity and Governance Network, or EMBL REIGN).

This tutorial has been developed with funding from the CINECA project. The CINECA project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 825775 and from the Canadian Institute of Health Research under grant agreement No. 404896.

What will I achieve?

By the end of the course you will be able to:

• Explore the historical and societal context of the use of human data in research
• Discuss ethical principles relevant to the collection of human materials and data
• Discuss types of informed consent
• Explain the role of patient advocacy

What resources do I need?

There are no specific resources required to complete this tutorial.

DOI: 10.6019/TOL.BeyondNumbers-t.2023.00001.1

Course contents

How and when to access the course

All our courses are designed with flexibility in mind. You can access them for free at any time, just click on the “Enter Course” button.

It is up to you how you use the course; you can either study the full course or you can focus on sections that are relevant to you, however for this tutorial we recommend you watch the videos in order. To jump between sections, use the navigation bar on the left or the arrows at the bottom of the page. You can also choose whether to complete the course in one go, or over several visits.

The average time to read through the main body of the course is 1 hour (not including exercises and external links). The time may vary depending on your prior knowledge and how you choose to work through the course.

Making the most of the course

Learning something new takes time and practice. We encourage you to:

• Use the activities and quizzes to help you check your learning, recall and apply key concepts. Look out for these icons:-

  Activities

  Quizzes

  Videos

• Revisit sections as and when you need them. Bookmark relevant pages in your browser or use the navigation panel to jump the relevant section.

Getting help and providing feedback

If something isn’t working or if you have a question get in touch by contacting us at trainonline@ebi.ac.uk

Tell us what you thought about the course (both good and bad!) using the “Feedback and help” button found at the top of each page.

Your feedback helps us ensure we are providing training that is relevant and useful for you.

For help and support on EMBL-EBI resources you can contact the helpdesk directly.

Learn more

You can explore other training on offer from EMBL-EBI on our website. We offer online courses, webinars, face-to-face courses and offsite training.