A blog from the Centre for Research Ethics & Bioethics (CRB)

Month: May 2014

Building European infrastructures for research

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogThe European Union is traditionally about creating an internal market, where goods, services, labor and capital can move freely between member states.

Lately there have been efforts to create also European infrastructures for research, where researchers in the different member states can collaborate more efficiently, and compete on a global “research market.” A new tool for such European governance of research is the European Research Infrastructure Consortium, abbreviated ERIC.

If at least three member states hand in a joint application, the Commission can establish an ERIC – an international organization where the involved member states jointly fund and manage a European infrastructure for research in some area. In November 2013, an ERIC was established for biobank research: BBMRI-ERIC, placed in Graz, Austria.

Understanding what an ERIC is and whether BBMRI-ERIC has tools to make the diverse regulations for biobanking in different EU member states more uniform, is not easy. However, a “Letter” in the European Journal of Human Genetics addresses both issues:

The letter is written by Jane Reichel, Anna-Sara Lind, Mats G. Hansson, and Jan-Eric Litton who is the Director General of BBMRI-ERIC.

The authors write that although the ERIC lacks substantial tools to make the regulative framework for biobanking more uniform, it provides a platform where researchers and member states can collaborate developing better ways of navigating the complex legal and ethical landscape. The ERIC also facilitates administration, owning and running of equipment and employment of staff on a long-term basis, thus enabling a time perspective proper to research infrastructures (rather than individual research projects). It also provides opportunities to develop common standards for biobanking activities (e.g., handling of samples) that make biobanks function better together.

Finally, because of the required regular contacts with the Commission and representatives of all EU member states, channels are opened up through which the interests of research can be communicated and influence policy areas like data protection.

Read the letter if you are interested to know more about this new way of building European infrastructures for research.

Pär Segerdahl

Part of international collaborations - the Ethics Blog

Open biobank landscapes

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogLast week I wrote about the transition from organizing science as a tree of knowledge that once in a while drops its fruits onto society, to organizing research as part of knowledge landscapes, where the perspective of harvesting, managing and using the fruits is there from the beginning.

That the proud tree is gone might seem sad, but here we are – in the knowledge landscape, and I believe the development is logical. As a comment to the previous post made clear, many fruits fell from the old tree without coming into use.

The notion of knowledge landscapes sheds light on the attempt by BBMRI.se to build infrastructure for biobank research. The initiative can be viewed as an attempt to integrate research in broader knowledge landscapes. Supporting research with an eye to the interests of patients is a new way of managing research, more oriented towards the fruits and their potential value for people than in the era of the tree of knowledge.

The novelty of the infrastructural approach to biobanking isn’t always noticed. In Sweden, for example, the biobank initiative LifeGene was met with suspicion from some quarters. In the debate, some critics portrayed LifeGene as being initiated more or less in the interest of a closed group of researchers. Researchers wanted to collect samples from the population and then climb the tree and study the samples for god knows which purposes.

Those suspicions were based on the old conception of science as a high tree, inaccessible to most of us, in which researchers pursue “their own” interests. The aim with LifeGene, I believe, is rather to integrate research in a knowledge landscape, in which research is governed more by the interests of patients.

We mustn’t underestimate the challenges such a reorganization of research has to deal with, the forces that come into play. I merely want to suggest a new way of surveying and thinking about the transition – as a change from approaching science as a high tree of knowledge to integrating research in open knowledge landscapes.

If you want to read more about research in knowledge landscapes, you find Anna Lydia Svalastog’s article here, and the network where these ideas originated here.

In September 2014, the third conference, HandsOn: Biobanks, is organized, now in Helsinki. Academics, industry, doctors, patient groups, policy makers, public representatives and legislators are invited to share knowledge and experiences. As in previous conferences in the series, there is an interactive part, The Route, in which biobanking processes can be followed from start to finish, with ample opportunities for discussion.

View the conference as part of maintaining open biobank landscapes, with research as one of several integrated components.

Registration is open.

Pär Segerdahl

We like broad perspectives : www.ethicsblog.crb.uu.se

From tree of knowledge to knowledge landscapes

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogScience was long revered as free and self-critical pursuit of knowledge. There were hopes of useful applications, of course, but as fruits that once in a while fall from the tree of knowledge.

In a thought-provoking article in the Croatian Medical Journal, Anna Lydia Svalastog describes how traditional reverence for science and devout hope of fruits from above in practice disappeared with World War II.

Researchers who saw science as their calling instead found themselves called up for service in multidisciplinary projects, solving scientific problems for politically defined aims. Most famous is the Manhattan project, intended to develop an atomic bomb to alter relative military strengths.

This way of organizing research has since then become the rule, in a post-war condition in which research initiatives aim towards altering relative economic strengths between nations. Rather than revering science, we value research in project format. We value research not only in economic terms, I want to add, but also in terms of welfare, health and environment.

From the late 1970s, political and economic interest in research shifted from physics to the life sciences and biotechnology. Svalastog mentions examples such as genetically modified organisms (GMO), energy wood and biological solutions to pollution. It is difficult to say where research ends and applications begin, when interest in applications governs the organization of research from the outset.

The main question in the article is how to understand and handle the new condition. How can we understand the life sciences if society no longer piously anticipates applications as fruits from above but calculates with them from the beginning?

Svalastog uses a new concept for these calculated fruits: bio-objects. They are what we talk about when we talk about biotechnology: energy wood, GMO, cultivated stem cells, vaccines, genetic tests and therapies, and so on.

The point is that science doesn’t define these objects on its own, as if they still belonged to science. Bio-objects are what they become, in the intersection of science, politics and society. After all, vaccines don’t exist and aren’t talked about exclusively in laboratories, but a parent can take the child to the hospital for vaccination that was decided politically to be tax-financed.

Instead of a tree of knowledge stretching its fruit-bearing branches above society, we thus have flatter knowledge landscapes in which a variety of actors contribute to what is described in the article as bio-objectification. The parent who takes the child to the hospital is such an actor, as is the nurse who gives the vaccine, the politicians who debate the vaccination program, the journalists who write about it… and the research team that develop the vaccine.

Why do we need a concept of bio-objectification, which doesn’t reverently let the life sciences define these objects in their own terms? I believe, to understand and handle our post-war condition.

Svalastog mentions as an example controversies about GMO. Resistance to GMO is often described as scientifically ignorant, as if people lived in the shadow of the tree of knowledge and the solution had to consist in dropping more science information from the tree. But no links with levels of knowledge have been established, Svalastog writes, but rather with worldviews, ethics and religion.

What we need to handle our condition, Svalastog maintains, is thus the kind of research that was neglected in the post-war way of organizing research. We need humanistic research about knowledge landscapes, rather than instinctive reactions from a bygone era when the tree of knowledge was still revered.

I presume that this humanistic research too will be performed in project format, where humanistic scholars are called up for research service, studying the contexts within which bio-objects are understood, handled and valued.

Undeniably, however, some interesting thoughts about our condition here hover more freely above the knowledge landscapes.

Pär Segerdahl

Part of international collaborations - the Ethics Blog