On Wednesday 17 March 2021, 14:00 – 15:30 CET
Biobanking with children is a practical vector of empowerment and engagement. Without having to expose the minor participants to possible clinical risks, it provides understanding of the biomolecular turn of research and medicine, emphasises the impact of genetic knowledge on the life of each child and on society in general, and expands the collaborative horizon at stake.
However, it offers challenges as it poses specific ethical issues in relation to assent, consent and re-consent and therapeutic misconception, while it asks for a rethinking of the processes of data sharing and disclosure of results within a rights horizon, tailored to children.
Moreover, as a vulnerable population, minors must be adequately protected, at the same time they need to be recognised and included as valuable participants throughout the biobanking process. As children grow and mature, so must the attitude of all the players (parents, guardians, teachers, researchers) such that a dynamic sense of empowerment is fostered and maintained in the biobanking community and the society it serves.
What’s in it for me?
You will learn about:
An outline of the regulatory background
Ethical issues specific to biobanking from children
Data sharing and children’s rights
You will understand:
The need to change biobanking processes & attitudes in all players involved in biobanking with children
Sara Casati, PhD & MD in Bioethics, EMM in Research Infrastructures
A bioethicist, very fond of participatory approaches & deliberative methods, understanding the bioethics as a process of democratization of science. Since 2013, she is involved in the ELSI activities of the Italian National Node (BBMRI.it), most recently in providing ethical advice in relation to the ongoing COVID-19 crisis. She serves as a national expert to BBMRI’s ELSI team as well as a member of BBMRI-ERIC’s ELSI Services & Research team where she currently leads the Task Force Research Ethics Committees. At both the national as well as European level, she contributes with her knowledge to shaping harmonised policies and good practice ELSI tools with a particular attention to open and fair access, public engagement and collaborative research, and to modelling empowerment settings with a focus on **vulnerability scenarios (Rare Disease patient, neurodegenerative disease patient, minor, student) and on ** scientific citizenship.
Bridget Ellul, MB.ChB., MRCPath., FRCPath.
Dr Ellul is a medical graduate, specialized in Histopathology and Forensic Medicine, with an interest in medical law and bioethical issues. She has worked as a hospital consultant, a court expert and a lecturer, serving as Head of the Department of Pathology, University of Malta. She is currently an ELSI Adviser at the Centre for Molecular Medicine and Biobanking, which represents the University of Malta as the BBMRI.mt node, and is working on issues related to informed consent. She is a member of BBMRI-ERIC’s ELSI services and Research team, and a member of the REC task force, drawing on 15 years’ experience of work on Research Ethics Committees, assessing clinical trials and university research projects. She has served on the national Bioethics Consultative Committee and is familiar with medical regulatory affairs, having served on the Medical Council of Malta, on the Medical Specialist Accreditation Committee and as elected president of the Malta College of Pathologists.