The case of data reuse: ethical, legal, and societal issues in international genomic data access and sharing
Health data collected in cohort studies are valuable sources for knowledge generation and the advance of biomedical research. However, the use of these data for research projects beyond the initial purpose raises several ethical, legal, and societal questions regarding the sensitivity of genomic data sourced from vulnerable and ethnic groups, such as African genetic data and material.
The webinar addresses these challenges regarding reuse of health/genomic data in CINECA from the ELSI perspective and FAIR principles, and highlights GDPR provisions and their institutional sources of interpretation, national laws, the corresponding legal, ethical, and social science literature, as well as outcomes from stakeholder engagement workshops with patient representatives, African researchers, and CINECA technical experts. The webinar provides ethical and legal recommendations that take societal implications into account for data access to European, Canadian, and African cohorts and responsible sharing mainly on four key areas: (1) Engagement and benefit sharing as prerequisites for data sharing, (2) Informed consent and reuse of data, (3) Safeguards and respect for privacy, and (4) Further uses and data-access. The webinar concludes with an outlook on upcoming ELSI developments regarding data reuse, synthetic data, and artificial intelligence (AI).
Resource type: Recorded webinar