Advances in neurotechnology have prompted important discussion around the idea of “neurorights,” which are a set of human rights aimed at safeguarding neural data and mental privacy. While these concerns primarily focus on technologies such as brain–computer interfaces, a recent article explores how the concept of neuroprivacy, one component of neurorights, applies to research using human brain organoids, which are structures grown from stem cells that mimic certain aspects of the human brain. These organoids offer new ways to study brain development and diseases, but they also raise ethical questions about privacy and consent. This study concludes that brain organoids developed from stem cells present minimal risk to mental privacy, but calls for greater clarity on the protection of donor data related to brain diseases.

ASHBi/Kyoto University

Neuroprivacy encompasses the protection of neural data, but the primary concern is typically mental privacy, specifically in regard to the risk of extracting personal thoughts or memories from neural data. This is a particularly pressing issue for technologies like neuroimaging and brain–computer interfaces, which can potentially access information about a person’s mental states. However, brain organoids do not carry the same risks because they cannot replicate the neural circuits necessary to store or reveal a donor’s mental states. Nevertheless, there is concern over protecting disease-related data in organoid research, particularly when organoids are derived from patients with conditions prone to stigmatization. As organoids are used in more sophisticated models of human brain disorders, ensuring donor anonymity and safeguarding sensitive health information will become increasingly important.

One of this study’s key arguments is that while neuroprivacy is an important issue in neurotechnology, it might not need to be redefined for brain organoid research. Privacy concerns in this research are largely consistent with those in other areas of medical research involving patient-derived cells. Across all research of this type, focus should remain on ensuring the anonymity of donors, particularly when sensitive disease information is involved. As research on brain organoids continues, the authors recommend that ethical debates stay focused on substantive risks and benefits, dispelling misconceptions about brain organoids and mental privacy.

The authors emphasize the importance of public understanding when it comes to brain organoid research, particularly to prevent misconceptions that brain organoids might reveal a donor’s mental state. Such misunderstandings could lead to unnecessary restrictions on a promising area of science. By educating the public and policymakers on the actual capabilities of brain organoids, the researchers hope to foster a balanced regulatory environment that supports scientific advancement while maintaining ethical standards.

The study stresses that while no new neuroprivacy protections are necessary, ethical considerations related to brain organoid research—like donor consent and data sharing—remain critical. Moving forward, the researchers suggest that existing guidelines, such as those established by the International Society for Stem Cell Research, provide a foundation for protecting donor information without the need for additional legal frameworks specific to neuroprivacy.

Writing : ThinkSCIENCE, Inc. (Tokyo, Japan)

Paper Information

Kataoka, M., Ishida, S., Kobayashi, C., Lee, T., & Sawai, T. (2024). Evaluating Neuroprivacy Concerns in Human Brain Organoid Research. Trends in Biotechnology. https://doi.org/10.1016/j.tibtech.2024.09.001