de Groot Hanna, van Daal Manon, Hofland Regina W, Bronsveld Inez, Jongsma Karin R, Ten Ham Renske M T
Julius Center for Health Sciences and Primary Care, Department of Epidemiology & Health economics, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
Julius Center for Health Sciences and Primary Care, Department of Bioethics & Health Humanities, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
BMC Med Ethics. 2025 Jul 29;26(1):109. doi: 10.1186/s12910-025-01269-3.
Advancing organoid technology requires human tissue donations and collaboration between researchers and commercial parties. However, many potential donors have reservations about commercial involvement in organoid research. To better understand these reservations, we conducted four focus groups with potential donors. Two focus groups were held with individuals with cystic fibrosis (n = 10). One focus group included individuals with neurodegenerative diseases (Parkinson's or Huntington's disease) (n = 4) and the other consisted of individuals with neurological disease (epilepsy) (n = 5). Four themes were identified: (1) benefits and concerns regarding commercial involvement, (2) trust in involved parties in research, (3) control over commercial parties and (4) appreciation of donors. To address these themes, we recommend that researchers and commercial parties communicate transparently and effectively, actively engage and appreciate donors, implement robust oversight mechanisms and (re)establish trust and trustworthiness through responsible practices. These considerations can help researchers and commercial parties work toward responsible and sustainable organoid research.
推进类器官技术需要人体组织捐赠以及研究人员与商业机构之间的合作。然而,许多潜在捐赠者对商业机构参与类器官研究持保留态度。为了更好地理解这些保留态度,我们与潜在捐赠者进行了四个焦点小组讨论。两个焦点小组由囊性纤维化患者组成(n = 10)。一个焦点小组包括神经退行性疾病(帕金森病或亨廷顿舞蹈症)患者(n = 4),另一个由神经系统疾病(癫痫)患者组成(n = 5)。确定了四个主题:(1)对商业参与的益处和担忧,(2)对研究中相关各方的信任,(3)对商业机构的控制,以及(4)对捐赠者的感激。为了解决这些主题,我们建议研究人员和商业机构进行透明且有效的沟通,积极参与并感激捐赠者,实施强有力的监督机制,并通过负责任的做法(重新)建立信任和信誉。这些考量有助于研究人员和商业机构朝着负责任且可持续的类器官研究努力。