D4.3. Public attitudes, understandings and perspectives on organoid research: Findings from a series of deliberative workshops

TY - RPRT

T1 - D4.3. Public attitudes, understandings and perspectives on organoid research

T2 - Findings from a series of deliberative workshops

AU - Ravn, Tine

AU - Sørensen, Mads P.

AU - Saugstrup, Louise Isgaard

AU - Picozzi, Mario

AU - Pegoraro, Renzo

AU - Capulli, Emma

AU - Rasori, Giovanni

AU - Spyrakou, Eleni

AU - Stavridi, Vana

AU - Kavouras , Panagiotis

PY - 2022/3

Y1 - 2022/3

N2 - Based on a unique series of deliberative workshops, the report explores and chronicles the attitudes, values and perspectives on organoid research among representatives from the general public, patients, donors, vulnerable groups and CSOs with a particular view to the distinct moral, regulatory and ethical implications of organoid research that emerged from the deliberations. Three deliberative workshops with a total of 51 participants were held in November, 2021 in Italy, Greece and Denmark and hence across three different European countries representing different parts of Europe and different religious, cultural and science-in-society contexts. The deliberations were conducted as part of the Horizon 2020 project HYBRIDA (Em-bedding a comprehensive ethical dimension to organoid-based research and resulting technologies), which aims to develop a conceptual and regulatory framework including operational guidelines for the field and a code of conduct (CoC) for researchers in academia and industry, partly based on a comprehensive three-stage public engagement co-creation and validation process of which the series of deliberative workshops constitute the first course of action. Overall, participants expressed a positive attitude towards organoid research irrespective of participant category and background characteristics such as gender, religious affiliation and age. They found the prospects of progress as well as both current and future benefits of organoid research promising and attached positive expectations to their application and contribution within biomedical research. While the participants broadly supported the use of organoids, they also expressed a number of key concerns and worries related to their current and future derivation and use: Participants expressed unease towards the commercialisation of organoids and were concerned that organoid research would add to existing inequalities if not properly and responsibly governed. Potential misuse and breach of the privacy of personal data in connection with data storage and donation was also emphasised as a considerable concern. Another concern, albeit not dominant, was potential misuse of organoids for war purposes. The two interrelated themes of informed consent and responsible governance were highlighted through-out the deliberations as particularly important for participants in order to safeguard ethical and acceptable use. A majority of participants advocated for some restrictions imposed on consent procedures and recommended that issues of ownership and remuneration be specified in the consent form and be contingent on the type of consent provided. Nonetheless, a majority adopted the position that donations of cells should be viewed as a donation or gift transferred without financial compensation.In general, it is evident from the deliberations that ethical use of cell donations has to be guaranteed through strict governance structures, control and ethical oversight procedures. Both Greek and Italian participants address an association between concerns about misuse of organoid research and a societal distrust in science, which underlines the importance of clear, transparent and objective research dissemination and science communication. It is also evident from the deliberations that cerebral organoids/brain organoids raise specific ethical issues and concerns due to questions concerning conscience and moral status. Participants generally pointed to the dynamic nature of organoids and a concurrent need for ongoing societal debate, regular revisions of ethical guidelines and procedures where ethical needs and requirements are aligned with the state-of-the-art in organoid research as it increasingly moves into clinical and translational research. Participants were divided in their conceptualisations of organoids. While a majority of participants primarily perceived them as research tools in their current stage, many participants regarded them as living organisms. The report provides a broad set of recommendations from participants for key issues to be addressed in future ethical guidelines on organoid research. The first part of the report reviews the main findings from the deliberations; the second part includes three comprehensive reports from each of the national workshops for a more single-case and detailed exposition.

AB - Based on a unique series of deliberative workshops, the report explores and chronicles the attitudes, values and perspectives on organoid research among representatives from the general public, patients, donors, vulnerable groups and CSOs with a particular view to the distinct moral, regulatory and ethical implications of organoid research that emerged from the deliberations. Three deliberative workshops with a total of 51 participants were held in November, 2021 in Italy, Greece and Denmark and hence across three different European countries representing different parts of Europe and different religious, cultural and science-in-society contexts. The deliberations were conducted as part of the Horizon 2020 project HYBRIDA (Em-bedding a comprehensive ethical dimension to organoid-based research and resulting technologies), which aims to develop a conceptual and regulatory framework including operational guidelines for the field and a code of conduct (CoC) for researchers in academia and industry, partly based on a comprehensive three-stage public engagement co-creation and validation process of which the series of deliberative workshops constitute the first course of action. Overall, participants expressed a positive attitude towards organoid research irrespective of participant category and background characteristics such as gender, religious affiliation and age. They found the prospects of progress as well as both current and future benefits of organoid research promising and attached positive expectations to their application and contribution within biomedical research. While the participants broadly supported the use of organoids, they also expressed a number of key concerns and worries related to their current and future derivation and use: Participants expressed unease towards the commercialisation of organoids and were concerned that organoid research would add to existing inequalities if not properly and responsibly governed. Potential misuse and breach of the privacy of personal data in connection with data storage and donation was also emphasised as a considerable concern. Another concern, albeit not dominant, was potential misuse of organoids for war purposes. The two interrelated themes of informed consent and responsible governance were highlighted through-out the deliberations as particularly important for participants in order to safeguard ethical and acceptable use. A majority of participants advocated for some restrictions imposed on consent procedures and recommended that issues of ownership and remuneration be specified in the consent form and be contingent on the type of consent provided. Nonetheless, a majority adopted the position that donations of cells should be viewed as a donation or gift transferred without financial compensation.In general, it is evident from the deliberations that ethical use of cell donations has to be guaranteed through strict governance structures, control and ethical oversight procedures. Both Greek and Italian participants address an association between concerns about misuse of organoid research and a societal distrust in science, which underlines the importance of clear, transparent and objective research dissemination and science communication. It is also evident from the deliberations that cerebral organoids/brain organoids raise specific ethical issues and concerns due to questions concerning conscience and moral status. Participants generally pointed to the dynamic nature of organoids and a concurrent need for ongoing societal debate, regular revisions of ethical guidelines and procedures where ethical needs and requirements are aligned with the state-of-the-art in organoid research as it increasingly moves into clinical and translational research. Participants were divided in their conceptualisations of organoids. While a majority of participants primarily perceived them as research tools in their current stage, many participants regarded them as living organisms. The report provides a broad set of recommendations from participants for key issues to be addressed in future ethical guidelines on organoid research. The first part of the report reviews the main findings from the deliberations; the second part includes three comprehensive reports from each of the national workshops for a more single-case and detailed exposition.

M3 - Report

BT - D4.3. Public attitudes, understandings and perspectives on organoid research

ER -