Breeding Brains? Patients’ and Laymen’s Perspectives on Cerebral Organoids

Abstract

Aim: To explore the perspectives of patients and laymen with regard to the development, use and storage of cerebral organoids, in order to contribute to the ethical debate about this technology. Materials & methods: In depth semi-structured interviews with 28 patients and laymen were conducted. A qualitative thematic analysis was undertaken using a constant comparative method. Results: Three interrelated themes emerged from the empirical material: moral value; willingness to donate; and elements of good governance. Conclusion: Patients and laymen are most concerned about cerebral organoids potentially developing consciousness and potential misuse. They support the use of cerebral organoids under the conditions that donors are adequately informed and that there will be good governance. Perspectives of patients and laymen are helpful to enable responsible development and use of cerebral organoids in practice.

Patients' perspectives on the derivation and use of organoids

“…However, our interviewees were concerned about profit-driven motives and this concern was not unique to organoids. In addition, while our interviewees echoed strong altruistic sentiments regarding organoid research ( Boers et al, 2018 ; Haselager et al., 2020 ), they did not endorse an ethical duty to participate in research ( Haselager et al., 2020 ). Finally, unlike the interviews with adults and parents of children with CF conducted in the Netherlands, where participants' concerns gradually arose during the course of the conversation ( Haselager et al., 2020 ), our interviewees tended to become more comfortable with organoid research as the discussion progressed and questions were asked and answered.…”

“…Our research expands upon the findings of two small interview studies from the Netherlands described above Haselager et al, 2020). First, our study included patients from a variety of disease groups as well as primary care outpatients.…”

“…The second study consisted of interviews with patients with neurologic or psychiatric diseases and members of the public regarding the derivation, use, and storage of brain organoids. In this study, interviewees broadly supported the use of brain organoids, but they were concerned about consciousness and potential organoid misuse ( Haselager et al., 2020 ). Together, these findings reveal that certain aspects of organoid research can be morally salient to patients and suggest there may be relatively straightforward approaches taken to manage them.…”

“…Furthermore, while this conceptual scholarship is valuable, the perspectives of patients, who are, after all, the sources of the tissues and recipients of potential clinical interventions, on the derivation and use of organoids are essential to informing the analysis of the ethical and policy issues. To date, two small studies in the Netherlands have been reported ( Boers et al, 2018 ; Haselager et al., 2020 ). The first involved interviews with patients with CF or their parents, many of whom had participated in related organoid research.…”

Organoids: a systematic review of ethical issues

“…Eighteen articles either did not elaborately discuss this issue [ 21 , 22 , 42 – 56 ] or focused only on consent for the use of organoids for one specific disease, such as dementia [ 28 ]. Thirteen articles discussed—albeit concisely—ethical issues related to informed consent [ 30 , 55 , 57 – 67 ]. Our search strategy identified four empirical papers which investigated the perspectives of tissue donors on informed consent for research in which organoids are generated [ 55 , 61 , 66 , 67 ].…”