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Workshop: The Road to Well-constructed Knowledge Commons for the Life Sciences

The RESET-affiliated project Crossover Research 2: Well-constructed Knowledge Commons is arranging a workshop on life science knowledge management.

Dates: June 25. – 26. 2019
Venue: Scandic Nidelven
Registration: Please register here for workshop participation, lunch and dinner before June 17th.

The Road to Well-constructed Knowledge Commons for the Life Sciences

 

 

The main obstacle for computationally enabled data-driven knowledge discovery in the life sciences is often presented as an issue of data management. While large-scale initiatives like Open Science and FAIR further emphasise the value placed on the sharing and integration of research data, the issue of knowledge management has received less attention. In this workshop, we summarise lessons from the interdisciplinary project Crossover Research: Well-constructed Knowledge Commons focusing on questions such as:

  • What do we mean by a life science knowledge commons?
  • How does life science knowledge management differ from research data management?
  • How can the work of Crossover Research project be utilized by the larger scientific community?

The Crossover Research project, based on philosophy and systems biology, is funded by the RCN SAMANSVAR program supporting research that explores and assesses conditions for the construction of responsible research and innovation systems. Crossover is engaged in GREEKC, a COST-action under the auspices of GRECO, a consortium working towards a “gene regulation knowledge commons” as an open and distributed infrastructure for gene regulation knowledge. This could be seen as a step along the road towards a grand, interoperable ecosystem of life science information resources built to support the envisioned life science of the future.

This 1,5 day workshop invites scientists and humanists to discuss the current state and the future of the life science knowledge commons with the aim to formulate ten simple rules for how to construct a knowledge commons resource.

Invited speakers:

Ruth Lovering (Professorial Research Fellow, Institute of Cardiovascular Science, University College London)

Ricardo de Miranda Azevedo (Postdoctoral Researcher, Institute of Data Science, Maastricht University)

Jon Olav Vik (Associate Professor, Faculty of Chemistry, Biotechnology and Food Science, Norwegian University of Life Sciences)

Sahar Hassani (Senior Adviser, Faculty of Biosciences, Norwegian University of Life Sciences)

 

Program outline (detailed program will be available soon):

Day 1 (09:00 – 17:00): The What’s and the Why’s of the Knowledge Commons
The main focus of the first day will be on presenting and contextualizing the work of Crossover Research 2 through talks from project participants and invited speakers.

08:30 – 09:00 Registration & Coffee
9:00 – 12:00 Setting the stage:
What is the life science knowledge commons and why is it necessary?
12:00 – 13:00 Lunch at Scandic Nidelven
13:00 – 17:00 The work of Crossover/GREEKC/DrugLogics/FAIR

19:00 Dinner at Øx Tap Room

Day 2 (09:00 – 12:00): “Well-constructed Knowledge Commons”
The second day of the workshop will be centered around key lessons for building and maintaining a well-constructed knowledge resource.

09:00 – 12:00 Lessons learned from Crossover Research 2.
12:00 – 13:00 Lunch at Scandic Nidelven

Categories
News

Lessons from Scandinavia

RESET-forsker Lars Ursin og Janicke Syltern har vært gjesteredaktører for et spesialnummer om bioetiske problemstillinger i tidsskriftet Pediatrics. De bidrar også med flere artikler i spesialnummeret, som dreier seg om etikk i nyfødtmedisinen i Skandinavia. Berge Solberg fra RESET har også en artikkel i spesialnummeret, som kan leses i sin helhet her.

Utdrag:

Look to Scandinavia

Lars Ursin, PhD,a Janicke Syltern, MD,b John D. Lantos, MDc

Should the rest of the world look to Scandinavian neonatal intensive care? In this special supplement, Scandinavian and international clinicians and bioethicists present, compare, and discuss the legislation, national guidelines, consensus documents, and practices in the field of neonatal care in Scandinavia. The central questions that bind these contributions together are whether there is a unified Scandinavian medicoethical approach or if, why, and how health care systems that seem to represent the same still differ in ethically significant ways. This supplement thus offers the reader an insight into the Scandinavian approach(es) and the lessons that can be learned.

 

Categories
News

#MeTooAkademia

“Tafsing på fagmiddager, trakassering i plenum og faglig baksnakking fra avviste flørtere. #MetooAkademia viser maktmisbruk med bred palett.”

RESET-forsker Sophia Efstathiou og Marit Hovdal Moan intervjuet i Morgenbladet i anledning #MeTooAkademia-kampanjen.

Categories
Blog Media News

Fanget av kjønnsfella

“Mannen er allestedsnærværende; kvinnekroppene er unntakene. Det gjelder både Starmus og utstillingen Body Worlds Vital.”

Kronikk  i Adresseavisen om Body Worlds Vital

av Sara Orning og RESET-forsker Ane Møller Gabrielsen.

 

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News

Forskning på liv og død

“For noen år siden publiserte Aftenposten nakenbilder av Fridtjof Nansen, fra boken Nansens siste kjærlighet. Oppslaget vakte debatt: Var ikke dette private bilder? Hadde det offentlighetens interesse? Samtidig, mannen er jo død, hvilken skade kan offentliggjøringen av disse bildene gjøre? Hvem tar skade av det – Nansen?”

 

RESET-forsker Lars Ursin blogger i NTNU sin fagblogg for medisin og helse.

Lars Øystein Ursin
Researcher

 

Categories
News

Lars Ursin on genetic research in Universitetsavisa

What does it mean to take part in genetic research, asks RESET researcher Lars Ursin in Universitetsavisa

Categories
News

Open meeting about genetic research September 6th

On the day before the RESET workshop, we will arrange an open meeting, engaging the public and the wider medical and research community on the topic of return of research results. The meeting will be arranged in collaboration with the Norwegian Biotechnology Advisory Board.

Registration and more information.

Categories
Blog Events News

RESET Workshop September 7-8: Feedback of Individual Genetic Results to Research Participants: Is it feasible? Should we do it? If so – why and when?

The RESET research group is hosting the last of three workshops in a project funded by the Research Council of Norway, the SAMKUL program. The previous workshops have been on dynamic consent and protection of privacy.

Recent developments in genetics and genomics have led to an intensified international debate about whether relevant genetic information should be shared with individual participants, and if yes, how this should be done. The emerging availability of personal genome scans, the increasing focus of the individual’s participatory role in disease prevention as part of personalized medicine the right to insight into information in research projects as well as a general emphasis on autonomy are strong drivers for implementing feedback of genomic information from research projects. However, these have to be balanced with issues of resource utilization and protection of participants from potential harm, avoiding unfounded screening, overdiagnosis, overtreatment and medicalization of populations.

The main questions concern whether there is a moral imperative to return results to participants, and if so, how to do this. Should individual return of results be considered a right, arguably the emerging international bioethics consensus, or should we stay with a public health model where return of results on an aggregated level still is the right level of benefit sharing? We assume that this is the part of the biobank debate where cultural differences is most decisive for different ways of framing the ethical debate, and we will address this in a comparative perspective.

Program

Thursday the 7th of September

9:00-9:30 Coffee and registration

Session 1 – Return of results: background and basic questions

Chair: Kristin S. Steinsbekk

9:30-10:10 Bjørn Kåre Myskja (NTNU, Trondheim) – Welcome: Return of results – the Norwegian context

10:10-10:50 John-Arne Skolbekken (NTNU, Trondheim) – The development of the understanding of incidental findings in medicine

10:50-11:10 Coffee break

11:10:-11:50 Lars Ursin (NTNU, Trondheim) – The HUNT4 (a) policy

11:50 – 12:50 Danya Vears (KU Leuven) – From laboratory practices on return of results to a decision making support tool

13:00-14:00 Lunch break

 

Session 2 – Return of results: empirical findings and their ethical significance

Chair: Berge Solberg

14:00-15:00 Nina Halloway (The ETHOX centre, University of Oxford) – The impact of receiving feedback from the Australian Ovarian Cancer Study (AOCS): some lessons for genome sequencing research

15:00-16:00 Eline M. Bunnik (Erasmus Medical Centre, Rotterdam University) – An ethical framework for the management of incidental findings in imaging studies

16:00-16:20 Coffee break

16:20-17:00 Giovanni De Grandis (NTNU, Trondheim) – The normative significance of empirical studies of return of results

17:00-17:45 Plenary: Return of results – the value of empirical studies Vears, Bunnik, Ursin, De Grandis

 

19:30 Conference dinner – Venue to be confirmed

 

Friday the 8th of September

Session 3 – The ethics and politics of return of results

Chair: Bjørn K. Myskja

 8:30-9:10 – Berge Solberg (NTNU, Trondheim) – The ethics of incidental findings

9:10- 9:50 – Kristian Hveem – From local biobank to international data sharing

9:50-10:10 Coffee break

10:10-11:10 – Isabelle Ljøsne (Biobank Norway) Return of results in biobanking – is it feasible?

11:10-12:10 Tim Caulfield (Health Law Institute, University of Alberta) – Who should control the fruits of biobanking?

12:10 -12:45 – Plenary discussion – The way forward (Caulfield, Hallowell, Hveem, Ljøsne)

12:45-13:00 – Berge Solberg (NTNU, Trondheim) – Final considerations

13:00 Lunch

 

Categories
News

Early detection: Always beneficial?

Articles in the medical literature on early detection tend to focus on benefits rather than harms, but does evidence on outcomes warrant this difference, ask Bjørn Hofmann and the RESET member John-Arne Skolbekken in a recent article in the BMJ.

The article is HERE

The article is presented in GEMINI HERE

Categories
News

Berge Solberg on the hype of new medical technologies

In Klasseskampen, Reset member Berge Solberg is interviewed in the series “The New Human Being”.

Read the interview (in Norwegian) HERE and HERE