Confidential

Strasbourg, 6 November 2023                                                                            CDBIO (2023) 30

STEERING COMMITTEE FOR HUMAN RIGHTS

IN THE FIELDS OF BIOMEDICINE AND HEALTH

(CDBIO)

YOUTH FORUM ON BIOETHICS 2025

CONCEPT AND ROADMAP

Prepared by the Secretariat

Introduction and background

The Council of Europe aims to protect human dignity and the fundamental rights and freedoms of the individual regarding the application of biology and medicine. This includes a pressing need to embed human rights in technologies which have an application in the field of biomedicine.

This is one of the specific objectives of the Strategic Action Plan on Human Rights and Technologies in Biomedicine (2020-2025) of the Steering Committee for Human Rights in the fields of Biomedicine and Health (CDBIO). One of the four pillars around which the Strategic Action Plan is articulated is Communication and co-operation with others, including young people, as an opportunity to raise awareness of human rights principles relating to health and to discuss the human rights challenges raised by developments in the field of biomedicine.

Under this pillar, the CDBIO is to host a youth forum on bioethics to reflect on the needs, interests and stakes for young people and, take them into account when considering human rights challenges in the fields of biomedicine and health.

Pilot Youth Forum, 6 June 2023

Thanks to a voluntary contribution made by Ireland, and in the light of Ireland’s tradition of citizen assemblies and participative dialogue, the CDBIO organised a pilot youth forum on AI in healthcare, held in Strasbourg on 6 June 2023.

Fourteen youth participants from Ireland presented and exchanged views on the key challenges and proposed solutions regarding AI systems in healthcare vis-à-vis the issues of bias mitigation, training, equal access, and responsibility/accountability.

CDBIO delegations expressed great satisfaction with the rich discussions and insightfulness of the youth participants. They applauded the diversity of viewpoints brought forward by youth participants from different backgrounds which will provide the Committee with youth perspectives to inform its own work, including its strategic objectives and actions in the field of human rights and biomedicine.

Report of the CDBIO rapporteur on the pilot forum

As a follow-up to the pilot forum, the rapporteur, Tesi ASCHAN (Sweden), prepared a report on the event (Appendix) which provided key insights for the organisation of a larger scale forum in 2025, notably:

-       varied backgrounds of the youth participants

-       reliance on selected organisations and academic institutions to discern youth competencies and to outreach to potential candidates; facilitated by CDBIO delegations

-       onboarding process for young people, with clear and transparent process steps

-       CDBIO decision on one or several topics

-       structured and engaging preparation days leading up to the forum proper

-       modalities for presenting and exchanging with CDBIO

-       inviting all participants to make their views heard. If spokespersons are to present each working group’s discussions, the active participation of CDBIO delegates would be necessary to continue a lively discussion in which other members of each group would feel welcome to join in.

Further, the rapporteur underlines several key learnings from the pilot forum:

-       CDBIO choosing a topic linked to its current work

-       thorough preparations necessary from the CDBIO Chair, Secretariat, youth and their moderator(s)

-       a Secretariat coordinator and an expert moderator for the preparations are invaluable

-       preparation meetings could be held online for the young people to bond with each other and thus gain confidence to speak their minds

-       size of the group matters– too many participants would require different modalities and more attention to inclusion

-       language barriers will impact  modalities and format

Development and organisation of the forum 2025

The CDBIO is invited to create a preparatory group to work closely with the Secretariat to:

-       consolidate lessons learned from the pilot forum

-       propose topic(s) and modalities for the planning of the forum 2025

-       envisage whether it is practicable for CDBIO delegations to facilitate (i) financing for travel and subsistence of young people from their countries, and (ii) selection and recruitment of young people via their networks, such as youth organisations and academic institutions

From the perspective of the Secretariat, practicable and achievable milestones for the CDBIO, the youth participants and any other stakeholders would ensure a successful forum. Should the forum take place during CDBIO Spring plenary in 2025, the following milestones and deadlines are proposed.

Milestones	Deadlines
CDBIO preparatory group established	By/before end of 2023
CDBIO preparatory group to prepare a roadmap (this includes clarity on financing, proposed modalities for the forum and modalities for preparation meetings before, selection and recruitment, proposals for moderator(s))	CDBIO spring plenary, 2024
CDBIO to decide on topic(s) of the forum	CDBIO spring plenary, 2024
CDBIO to designate a (young) moderator(s) to accompany the Secretariat in engaging and mobilising youth participants; this person(s) should be the person(s) moderating their preparations in the days before the forum proper	CDBIO spring plenary, 2024
Secretariat to facilitate recruitment of youth participants (including onboarding efforts, invitation letters, online introduction)	Second half, 2024
CDBIO preparatory group to identify relevant information on the topic of the forum which could be shared with youth participants	Early 2025
CDBIO preparatory group identify speakers for the preparatory meeting(s)	CDBIO winter plenary, 2024
Briefings, online preparation meetings, and other assistance to youth participants	From mid-to-late 2024
Online meetings with youth participants (together with selected CDBIO topic experts) to support them in the orientation of their views, concerns etc on the bioethical topic chosen	April-May 2025

As regards the forum proper, it is proposed that the event is organised as follows:

-       1.5 days preparation at the European Youth Forum (for an enlarged forum of approx. 28-30 young people from 14-15 countries); including social event for bonding

-       Opportunities for CDBIO members to support their designated young people, where necessary

-       One full day of youth presentations and exchanges with CDBIO members

After the forum is concluded, the following steps are proposed:

-       Preparation of a consolidated document of main concerns, views, and proposals by the moderator, and submitted to the CDBIO

-       Report of the rapporteur prepared in time for it to be considered by the CDBIO during its winter plenary 2025

-       Feedback session for youth, led by CDBIO and Secretariat, to discuss how the Committee intends to address their concerns, views and proposals