Cross-national Genetic Research with Klaus Hoeyer, Aaro Tupasela and Malene Bøgehus Rasmussen
14 November, 2016
In this series of Backchannels posts, we’ll be highlighting new research in the 4S journals, ST&HV and ESTS. Here, Backchannels interviews Klaus Hoeyer, Aaro Tupasela and Malene Bøgehus Rasmussen, authors of the recent ST&HV paper, “Ethics Policies and Ethics Work in Cross-national Genetic Research and Data Sharing: Flows, Nonflows, and Overflows.” Klaus Hoeyer has a background in anthropology and is currently professor of medical science and technology studies at the University of Copenhagen where he studies data practices. Aaro Tupasela is a sociologist with an interest in science and technology studies and the biomedical collection and use of human tissue samples. Malene Bøgehus Rasmussen is an MD finalizing a PhD on chromosomal rearrangements; she also has an interest in the legal and ethical questions raised by the rapid technical developments in the field of medical genetics.
Backchannels: What brought you to this research topic?
Medical genetics is a rapidly evolving field, where both research and diagnostics frequently raise legal and ethical questions regarding the application of novel techniques, international collaborations, data sharing, and exchange of biological samples. Rasmussen, as a physician studying medical genetics, was interested in learning more about the hopes and concerns of her research participants, and as the two social scientists (Hoeyer and Tupasela) had worked on those issues in relation to other projects, so we teamed up. From the perspective of the social
scientists, the lab was interesting because of its long-standing experience with exchange of material and data from different contexts. By understanding better what it takes to make biological material and health data travel to Denmark we got a unique opportunity to explore the everyday work going into international biomedical research networks. In the course of our collaboration we realized that a lot of work that was aimed at maintaining good relations remained unacknowledged and unfunded.
Backchannels: What challenges did you overcome to complete the study?
It should come as no surprise that when you collaborate across disciplinary boundaries it can be challenging to understand each other’s methods and insights, but for us these challenges also came to serve as stimulus for understanding our shared topic: the work going into establishment of successful partnerships between researchers, research participants and collaborators. Furthermore, we had set out to explore the ethics policies structuring international collaborations, but these policies simultaneously structured our own collaboration and which types of material we could share with each other. Thus, we often found ourselves discussing what we could do rather than what we should do. Gradually, we realized that our collaboration was not only a means for understanding our topic of research, but a form of fieldwork in its own right through which we learned a lot about how ethics policies relate to the everyday ethics work aimed at ensuring mutual respect.
Backchannels: What lesson would you like people to take away from the paper you’ve just published?
We hope to have shown how the current political emphasis on ‘Open Science’ and ‘data sharing’ involves somewhat naïve ideas about ‘sharing’. Politicians who want to promote sharing need to pay more attention to the actual socio-material infrastructures of successful collaborations. It is not enough to make repositories and impose a demand to transfer material and data to them. There is a need to understand the work going into concrete collaborations and to find ways of funding not only software and repositories, but also work aimed at establishing trust and mutual respect. A lot of this work is unfunded. Data and information are generated by people within particular contexts where there may be multiple interests. We need to account for these interests when we develop open access and data sharing policies, and we need to address the tensions between data sharing and effort to secure the sometimes sensitive data created through genetic studies.
Backchannels: What is next on your research agenda?
The two social scientists have begun exploring in more depth the social shaping of data infrastructures. Tupasela is working on European data-sharing projects and tries to understand how researchers here engage in collaborations but do not just ‘share’; indeed, there is a preference for what he calls ‘data hugging’. Hoeyer works on the organization of data infrastructures in healthcare where a lot of similar challenges can be found. Also, he has continued exploring the collaborations described in this article together with a public health scientist, Zainab A Sheikh, who does fieldwork in Pakistan to understand better the relations between the lab and the local research participants in Pakistan. The genetic researcher, Rasmussen, plans to continue exploring social and ethical aspects of medical genetics and genetic research in collaboration with the social scientists – in tandem with developing her genetic research.