At the Ethics Lab at Copenhagen University, clinicians and scientists, biostatisticians, policy makers and lawyers came together to cross-fertilize each other in ethics discussions. The lab holds potential to promote a new form of moral deliberation of interconnected professional fields.
“We are seeing more and more interdisciplinary research done. The clinicians are in touch with the laboratory, the private sector with the public sector, – there are many stakeholders. We wanted to make a translational process and investigate ethics as a team and with an open mind and in strict confidentiality”, says key investigator and coordinator of the Ethics Lab, associate professor in medical ethics Jeanette Bresson Ladegaard Knox.
The fundamental idea of the laboratory is mapping the ethical terrain by exploring conceptual, empirical and normative questions in personalized medicine and through dialogue with stakeholders to investigate boundaries of the self, the human being, the person, the collective and the intersubjective.
Thus, Jeanette Bresson Ladegaard Knox and Mette Nordahl Svendsen, professor in medical anthropology and heading the MeInWe project (https://www.dataforgood.science/2019/06/12/the-ethical-dilemmas-in-ageing-science-are-accumulating/) behind the Ethics lab, gathered some 30 people and conducted four theme labs covering with four different themes; selection, data sharing, interpretation and private-public partnerships.
“The reason why we decided on these particular themes is due to observations and interviews made by the MeInWe researchers in various fields. Time and again we heard variations of these four themes and so we believed that it would be beneficial for stakeholders to have a forum to discuss the moral challenges that lie within the themes. We are not looking for a solution and a specific result. We are just curious and interested in sharing experiences and thoughts with people working within precision medicine and seeing similar ethical issues from where they are standing.”
The ethical questions debated in each lab were manifold;
- How do you select which patient should have the opportunity to be offered e.g. genome sequencing and still treat citizens equally, a very important feature of the welfare state?
- With whom can data be shared? What does it mean to ensure anonymity and privacy, when data travels across borders?
- What does it mean for healthcare providers and patients that the results of genetic tests can be difficult to interpret and communicate?
- What is public and what is private, when e.g. the state is collaborating with either national or international private sequencing companies?
The many ethical questions of precision medicine demonstrate its vast range and the many professions that it relies on.
“Take for example ‘Informed consent’. It is really difficult for people to be informed. Informed also implies understanding the information but medical data is usually complex. So, we may have to revisit the whole idea about informed consent – not to abolish it but to come up with new ideas to understand and protect it. How do we make sure that we are not forcing something on the patient,” asks Jeanette Bresson Ladegaard Knox and ends by pointing out that they “are hoping to further develop the concept of the ethics lab and have other areas interested in this kind of free forum for moral deliberation.”
The Ethics Lab is part of the MeInWe projects (https://meinwe.ku.dk/) at Copenhagen University funded by the Carlsberg Foundation (2017-2022)