Personalised medicine for the European citizens
13-14 January , 2011
Luxembourg City, Luxembourg

Organisers:

Draft Report

Summary

The workshop entitled “Personalised Medicine for the European Citizen – towards more precise medicine for the diagnosis, treatment and prevention of disease” took place at the UNIVERSITY OF LUXEMBOURG, Campus Limpertsberg, in the city of Luxembourg, LU on 13-14 January 2011. It was attended by 25 high-level scientists that spanned the biomedical sciences, social sciences and humanities. In addition to the proposer and local organiser of the workshop Dr. Carsten Carlberg, Science Officers representing the ESF standing committees for Life, Earth and Environmental Sciences (LESC), the European Medical Research Council (EMRC), Humanities (SCH) and Social Sciences (SCSS) also attended the meeting. Using breakout sessions as a tool to allow smaller groups of scientists discuss predefined “scoping” questions, the workshop aimed at defining the structure and content of a recently accepted ESF Forward Look on personalised medicine. Specifically these breakout sessions addressed the state-of-the- art, intended outcomes, and objectives of a Forward Look on personalised medicine. Furthermore, plenary discussions among the attending scientists aided in further defining stakeholders, methodology and potential key participants to include in the Forward Look.

Scientific Content

The 24 hour workshop was topically divided into 4 main sessions that in, different ways, helped define the topic and derive a concise model for the structure and content of an ESF Forward Look on personalised medicine.

Keynote presentation- session 1
The first session consisted of a keynote address given by Dr. Kári Stefánsson. The keynote presentation was kept open to students and colleagues from University of Luxembourg and was attended by approximately 40 persons. In his talk, Dr. Stefánsson provided examples from published studies at DeCODE genetics, on how heterogeneous genetic composition in a population might cause quite different phenotypes within disease areas such as cancer, hypertension, cardiovascular, and psychiatric diseases. In particular the brain and its associated pathologies such as schizophrenia were emphasised as a relevant organ to study with the novel technologies linked to personalised medicine. In the latter part of the keynote address it was pointed out that an interaction between gene and environment is indeed thought to be bidirectional and involve an as of yet undefined gene/behaviour component. With this in mind, Dr. Stefánsson emphasised that genes control behaviour, which in turn is tightly linked to environment. The interpretation of how we interact with our environment might therefore to a higher degree that currently thought be controlled by our genetic composition. Dr. Stefánsson concluded his talk by stating that the gains from personalised medicine in his perspective will provide more effective medicines, safer/cheaper medication and overall result in better and cheaper healthcare and less (rather than more) healthcare disparity. Following the presentation, questions from the audience were discussed. This Q&A session reflected very well the diverse interdisciplinary mixture of participants in the workshop. Overall, session one
generally helped set the scene for the subsequent items of the agenda.

Thematic presentations- session 2
Session 2, which initiated the closed part of the meeting, included 3 thematic presentations aimed at setting the overall stage for the meeting and communicating the intention of the meeting to aid in the preparations for an ESF foresight on personalised medicine. This was important in order to have all participants know what to expect during the remainder of the workshop and which type of output the organisers would ask them to provide. The first short thematic presentation was given by Matti Sintonen from the Department of Philosophy, University of Helsinki, Finland. Dr. Sintonen was furthermore the appointed scientific member from the Standing Committee for humanities. His presentation focused on the potential for achieving synergetic effects by approaching a topic such as personalised medicine from various disciplinary angles simultaneously. In an introduction, Dr. Sintonen proposed a framework to understand scientific disciplines and ways to study something “in-between” disciplines. In this approach, a clear distinction was drawn to multidisciplinarity, pluridisiplinarity, and crossdisciplinarity. Interdisciplinarity can, according to Dr. Sintonen be defined in a narrow sense as: “Two or more fields or disciplines interact: ideas are exchanged, concepts and terms are unified, methods are borrowed and calibrated: there is a conscious attempt to vercome language and communication barriers”. The concept of applying an interdisciplinary approach to grand challenges was outlined – in particular to the topic of personalised medicine that is likely to harbour aspects of all disciplines. This was pointed out by showing that personalised medicine, in addition to the traditional “hard sciences”, also includes important social, economical, ethical, legal, and cultural aspects that should be integrated in the work. These are all areas where the humanities and social sciences, in an interphase with other science domains can contribute. Achieving true interdisciplinarity in this context would, according to Dr. Sintonen, help create new conceptual frameworks for addressing grand challenges and help educate young researcher generations.

The second presentation was intended as a short outline about the ESF Forward Look instrument followed by a third presentation on Foresight methodology by Joanna Chataway from the RAND institute. A short overview/summary of methodological approaches in foresighting was incorporated into the general ESF presentation that was given by the attending ESF Science Officer Lars Kristiansen. Following a brief introduction to ESF and its activities, the concept of, and methodologies for scientific foresight were introduced. This included “forecast” (positive scenario) and “backcast” (normative scenario) methodological approaches. The latter part of this presentation included an overview of the planned forward look on personalised medicine, outlining the different phases of a foresight, and defining the objectives for the present workshop:
• Define WS content/ refine objectives
• Identify chairs/co-chairs for WS
• Locations/dates?
• Identify Steering Committee
• Define other key users/stakeholders
Both presentations spurred interesting exchanges among the attending scientists, indicating a keen interest from all represented science areas in the topic.

Breakout group discussions- sessions 3 and 4
Sessions 3 and 4 were designed as breakout group discussions where smaller groups of 6-8 experts of mixed expertise where encouraged to discuss predefined questions related to the area of personalised medicine in general and specifically on how to structure an ESF foresight around this topic.

Day 1
Discussions were aimed at identifying the overall framework for the ESF forward look. Following the breakout sessions in three groups, the chairs from each group with rapporteurs reconvened to summarise the outcome into one general presentation to be presented on day 2.
Briefly, the following 4 overall objectives were identified for a foresight on personalised medicine:
· Conceptualisation of personalised medicine.
· Define the major driving forces within different disciplinary domains
· Develop recommendations for use of national/European resources
· Integrate ethical/societal aspects into the overall recommendations
The Target audience and stakeholders were discussed as well as the institutions that would be most relevant for implementing the recommendations. A list of key factors for a successful implementation of the Forward Look was furthermore developed as output from these discussions. This involved, ensuring tandardisation/integration/harmonisation, education, include society as an actor, identify and use European differences as a strength, and be informed about technological development that drive the process of personalised medicine. In addition, the working groups discussed the challenges and opportunities for personalised medicine as well as future scenarios and state-of-the-art. In the latter, there was a focus on the global versus strictly European issues.

Day 2
On day two, the second round of the breakout group discussions followed a brief presentation of the integrated discussions from day 1 and discussion of this summary. In this second round of breakout group discussions, the participants were encouraged to participate in one of the following two groups:
Group 1: biomedical, technological, clinical expertise
Group 2: socio-economy, legal, ethics, society
This second breakout group discussion was providing a chance to discuss disciplinary specific aspects of the Forward Look and recommend specialists to attend specific working groups of the foresight. Both groups received a set of predefined questions that included areas of state-of-the-art, recommendations as to specialists and stakeholders that should be included in the foresight. There was a clear consensus between the two groups in that an interdisciplinary approach would enable this initiative to provide a new and very relevant type of foresight to European decision makers. Several participants from the workshop furthermore volunteered to participate and organise downstream events. Following the second breakout session, participants were reunited in plenum and a short discussion of the structure for the Forward Look was undertaken. This involved revising whether the overall objectives for the 24h meeting had indeed been met. ESF officers summarised the concrete output from the two day workshop.

Programme

Thursday 13th January 2011
12:30 Lunch
13:00 Welcome and introduction Carsten Carlberg & Stephane Berghmans
13:10 Plenary keynote presentation Kári Stefánsson
13:50 End of public session – (transfer to closed session)
14:00 Start of closed session Lars V. Kristiansen
14:05 Tour de table
14:20 Thematic presentations
- Interdisciplinarity – achieving synergy (~20 min) Matti Sintonen
- ESF Forward Look on Personalised Medicine (~10 min) Lars V. Kristiansen
- Methodology of strategic foresight studies (~20 min) Joanna Chataway
15:10 Coffee break
15:25 Break-out session 1
3 working groups (5-6 participants of mixed expertise in each)
- Chairs: Carsten Carlberg, Stephen Holgate, Aarno Palotie
- Recorders: attending ESF SOs
17:30 Close
20:00 Dinner

Friday 14th January 2011
08:45 Presentation of integrated results from break-out session 1 (discussion / questions)
09:30 Break-out session 2
2 working groups (participants allocated based on their expertise)
- Group 1: biomedical, technological, clinical expertise (WG1-4)
- Group 2: Socio-economy, legal ethics, society (WG5-6)
10:30 Coffee break
10:45 Short presentation of results from break-out session 2
11:10 Discussion of foresight structure and Working Groups
12:30 Lunch
13:00 Close