The ethical side of mini-organs in the lab
20 May 2019
Mini-intestines, mini-kidneys and even mini-brains. These promising organoids are increasingly grown in the laboratory.
On the one hand to predict whether medication will work in a specific patient and on the other to develop new medication. But who actually owns those organoids: the patient, the researcher, the hospital or a commercial company? On May 16, Sarah Boers obtained her PhD at the University Medical Center (UMC) Utrecht on the ethics of organoid technology.
Imagine you have cystic fibrosis, which is a serious hereditary condition. Your physician asks you if you want to take part in a study: they take a rectal biopsy and grow this biopsy into an intestinal organoids in the lab. This is a mini-intestine, on which new medications against cystic fibrosis can be tested. You do not have to think about this for a minute. Of course you are in!
But then you are asked if you want to give permission for storing your intestinal organoid in a 'living' biobank: a large freezer with hundreds of other mini intestines. For research, but in the future perhaps even to repair damaged organs. Then what? Do you know enough about that? What actually happens to your bodily material?
Sarah Boers, medical doctor and researcher, carried out research into ethical questions surrounding this new organoid technology. Sarah explains, “It is remarkable that researchers at the Hubrecht lab in Utrecht can grow these mini-versions of organs from human cells and store them in a 'living' biobank. This will enable them to carry out research into diseases, develop new medicines and even test customized medicines for individual patients. However, this presents us with ethical challenges. For example, many people do not know that pharmaceutical companies also have access to organoids for drug development, so there are also commercial interests at stake.”
Are organoids going all over the world?
Sarah's PhD research focuses on the ethical challenges of organoid biobanking: the donation, storage and use of organoids for scientific, clinical and commercial purposes. Sarah says, “Organoid biobanking raises many questions. What is the relationship between you and the organoids made from your tissue? Who owns them when they are stored in a biobank? If pharmaceutical companies have access to 'your' organoids, you contribute to the development of medicines, but at the same time you cannot claim any profit. How do we deal with that?” Her central research question is: “What ethical challenges related to organoid technology can we identify and how should we evaluate these challenges?”
Human and technological
Sarah draws important conclusions in her thesis, the first being that we need to establish the moral value of organoids. Sarah says, “As for the moral value: we have to consider organoids as hybrids: neither human nor thing. They are made from human tissue and therefore reflect the donor's body, identity, interests and values. At the same time, organoids are (bio)technological products and scientific instruments that have commercial value.”
Her second conclusion is that it is of great importance that organoids can be used by researchers worldwide. “We should not exclude commercial interests, because they are an important incentive for biomedical innovation, such as the development of new medicines. However, according to Sarah it is necessary to see organoids not only as scientific instrumentsand to protect the interests of donors, patients and society. There is room for improvement in that area," she concludes.
Dealing with commercial interests
Sarah also makes recommendations: “We need to better inform donors about the governance of the organoid biobank, for instance what are arrangements for property rights and commercial use and what ethical oversight measures are put in place?. In addition, the biobank, companies and researchers have ongoing obligations to donors and society after permission has been granted. For example, to distribute profits fairly and to keep donors involved in the process. In this way, people know what happens to their bodily material and can continue to exercise control over it.”