Using organids for research while protecting patients’ identity

Organids, 3D models of our organs that are created from our stem cells, allow for personalised medicine, which means giving an individual the treatment that works best for them. Doctors can test a course of treatment on an organid to understand more precisely how the organid’s stem cell donor will react to that treatment. Organids also offer great promise for researchers, because they allow for more accurate in vitro testing. While patients generally want to allow their organids to be used to for research or personalised medicine purposes, organids are repositories of data about the person who donated the stem cells, so cell donors need to be able to protect their data. For their part, researchers need to be able to ask stem cell donors for permission before conducting research on their organids, which is difficult to do if donors are kept anonymous.

The TWINs project is developing a “biobank” that will preserve organids for research and allow the identification of an organid donor while still protecting their privacy, using block-chain technology.

Starting with existing cystic fibrosis organoids

In its first test case, the TWINs project will work with organids that have already been developed to test treatments for patients suffering from cystic fibrosis. TWINs will allow access to these organids through its block-chain managed biobank. Researchers will be able to obtain permission from the patients who donated the stem cells to work with an organid. That permission will be clear and identifiable throughout the research, to all parties involved, in a way that protects the data and identity of the stem cell donor. Based on a durable digital identity, the process will be in keeping with the GDPR and the ethical need to protect patients’ privacy.

With a first prototype developed by the end of 2020, the TWINs programme will make the platform available for all sorts of organoid models, ranging from intestine to brain models. The research conducted on these organoid models will range beyond cystic fibrosis, to ageing, and more wide-spread applications, such as toxicology to understand early in drug development how one patient could respond differently from another.

Allowing advances in personalised medicine

A central driver to this project is SUN bioscience, a Swiss start-up working in organoids that was the 2017 Winner of the EIT Health Catapult in the biotech category. SUN bioscience plans to implement the results of this project to further their work.

The project is in keeping with the EIT Health Focus Area of Improving Care Pathways because it opens up the possibility to widespread work in personalised medicine.