GHGA Webinar: Understanding Genetic Discrimination

14 Nov 2024

In this webinar, we will explore the history and concept of genetic discrimination, from the early ‘asymptomatic’ definitions to contemporary ideas of discrimination as a structural and intersectional phenomenon, and discuss the implications for research practice and policy.

This webinar is aimed at students, early career researchers, clinicians, bioinformaticians and everyone interested in having a better understanding of Genetic Discrimination. 

The webinar will be held by GHGA ethics expert Andreas Bruns from the University Clinic Heidelberg. 

Online Course: Data Protection for Human Research

16 Oct 2023

This course is designed to provide an overview of data protection regulations and obligations, with a focus on the General Data Protection Regulation (GDPR). We're are offering this course every six months, so check the training event page for announcements about future courses.

Webinar: Introduction to Research Consent and GHGA Consent Tools

07 Oct 2022

What is informed consent in research and medical settings? Why is it important and what are the challenges? How is consent given and are there tools that can help to set up consent forms? How can I check if consent given in an earlier study is compliant with current ethical and legal requirements? These are the questions this webinar wants to discuss. 

Sharing of genomic and other omics data collected in research studies or in clinical settings is key to improve the development of diagnostic tools and to drive personalised medicine forward. Given the sensitive nature of genomic and other health data it is crucial that patients and study participants are well informed about the use of their data and voluntarily consent to sharing it. 

However, researchers and clinicians needing to obtain consent to work with human omics data often face challenges: whether it is understanding the interplay between the legal and ethical role that consent plays, or struggling to write consent forms and assess whether older consent forms can be used to meet current ethical and legal standards.

This webinar aims to provide information for students, researchers and clinicians, but also people working with medical databases (bioinformaticians, data stewards and data protection officers) on the importance and the challenges around research consent. It will also showcase tools that can help setting up consent forms and assess existing consent.