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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

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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

 

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Events

Workshop June 2016

Time: 13-14 June. Place: St. Olav MTS21 Medisinsk teknisk senter

The workshop investigates how scientific visions of the common good expressed in the Life Sciences may come in conflict with other concerns. We discuss short term and long-term research efforts to release the potentials of Big Data

This workshop is arranged by RESET (The Research Group on the Ethos of Technology). The workshop is a joint effort of three projects RESET is engaged in.

Program:

Science for the common good – visions of technological opportunities

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Events

September 2015: Knowledge Management and the Futures of our Society

September 8-9, Medical Faculty MTS11, NTNU

Programme

Visions of Systems Biology carry hopes of understanding biology better thereby enabling the improvement of a range of practices within our society. In particular, systems biology holds promises for enhancing the health sector and being an essential approach towards personalized medicine. Innovative interdisciplinary collaborative structures as well as experimental and computational infrastructures are needed if any of these visions are to come to fruition.

This satellite focuses on the building of knowledge management (KM) structures, broadly understood as computing systems built to collect, make sense of and reason about information of biological parts and their dynamic interactions.

We are interested in questions like the following:

Systems biology (SB) begs for new modalities for the publication of results: What are the drawbacks of the current way of publishing and how can we enable a productive scientific discourse in systems biology?
How can/should desired research issues and answers steer appropriate KM development? What are the scientific and epistemic challenges in building KM for SB?
Which choices were made that resulted in the current KM infrastructure and the research issues and answers that are favored by this infrastructure? What are the ramifications for biotechnology and health sectors that make use of these KM infrastructures?
How can interdisciplinary work contribute? How should it be conducted to address challenges related to SB enabling and shaping other sectors, such as the health sector?
We invite participants to identify and discuss key past and present choices made in designing knowledge management systems with respect to the need to ensure the effectiveness and appropriateness for research (like systems biological or medical research questions). The workshop brings together scholars from the humanities as well as the natural sciences.

–This meeting is a satellite to the Virtual Physiological Human Conference 2014.

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Events

HUNT Workshop September 2015

Workshop Stiklestad

Time for a New Approach for Consent and Engagement in Large Population-based Health Studies

RESET – the Research Group on the Ethos of Technology at NTNU and the HUNT 4 Ethics advisory board welcomes you to our workshop on consent. This is a timely workshop as the Health Survey of Nord-Trøndelag is planning their fourth round of data collection: HUNT 4. We are pleased to be able to run this workshop at Levanger and Stiklestad, in the heart of the catchment area of HUNT. Joining us are national and international ELSI scholars, biobank custodians in large population-based health surveys and in clinical settings, researchers using data- and biobank resources and representatives from the Research Ethics Committee of Mid-Norway.

We are happy for having you all here and look forward to informative presentations and good discussions.

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Events

September 2015: Engagement and participatory day in the HUNT-study

huntmote

Dato: Mandag 21. september 2015

Tid: kl. 17:00-19:00

Sted: HUNT-Forskningssenter (Levanger)

I 2017 vil Helseundersøkelsen i Nord-Trøndelag samle inn data og blodprøver (HUNT4). Flere mener at du som deltaker bør være bedre informert om og mer involvert i det som skjer med dine blodprøver og helseopplysninger. Men her strides de lærde…

Nå er tiden kommet for at DU kan spille inn hva du tenker om spørsmål som dette i forkant av HUNT4:

  •   Ditt forhold til HUNT  aktivt eller passivt?
  •   Samtykke kun ved oppmøte eller hele tiden?
  •   Forskningsinformasjon på e-post – mas eller must?
  •   Innsyn i egen forskningsdeltakelse viktig eller unødvendig?
  •   Tilbakemelding av forskningsresultater bra eller belastende?

More information

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Events

Workshop March 2015: Research Methods at the Interface of Empirical and Normative Research in Health and Ethics

The two HF/NTNU spearhead projects RESET: Personalized Medicine and Posthuman Perspectives on Welfare Technologies organize a workshop on research methodologies at the interface of empirical and normative research of health and ethics. The projects have a multi-sited approach combining several research methods: document analysis, qualitative interviews, focus group interviews, communication analysis, and normative ethical analysis. The aims of the workshop are: a general discussion on research methods at the interface of empirical and normative research, to develop the research methods of the two projects, and to develop our international cooperation.

Wednesday 25.3

0930 Welcome Merete Lie/Bjørn Myskja

0945 RESET, Presentation of project, researcher Giovanni di Grandis, NTNU

1030 VELTEK, Presentation of project, Post doc researcher Gunhild Tøndel, NTNU

1055 VELTEK, Presentation of project, PhD researcher Jenny M Bergschöld, NTNU

1120 Coffee

1130 Discussion

1200 Ruth Chadwick, Cardiff University: Complementarity of disciplinary approaches in health ethics: how far have we come?

1300 Lunch

1415 Nelly Oudshoorn, Twente University: The importance of non-users and place for understanding user-technology relations

1515 Coffee

1545 Discussion of health technology research

1630 End

1930 Dinner

Thursday 26.3

0900 Søsser Brodersen, Aalborg University Copenhagen: Doing research in the intersections of workspace and homespace

1000 Tsjalling Swierstra, Maastricht University: Articulating lay normativity: a practice based and phenomenological approach

1100 Coffee

1115 Discussion of bioethics research

1215 Summing up Merete Lie/Bjørn Myskja

1230 Lunch

Venue
Wednesday 25.3 at Scandic Nidelven Hotel

Thursday 26.3 at NTNU Dragvoll room 6440

Categories
Events

Workshop June 2014: The normative dimensions of new technologies

In this workshop we will aim to articulate and discuss approaches and methodology that seeks to make normative research activity and research output productive in contexts of ongoing societal and technological decision-making. Central questions at this workshop will include: What are the adequate methods for answering the normative challenges posed by emerging technologies? How do we combine empirical methods and philosophical theories in answering particular research questions related to technology development? How do we work with technology partners and policy makers, in committees and advisory boards, in a way that is philosophically fruitful? What kind of contributions should we aim to provide?

The purpose of the workshop is twofold:
1. To create an opportunity for researchers in Norwegian Philosophy departments in collaborating in research by reading each other’s papers and commenting on them to help enhance research in their respective fields.
2. To polish papers for submission to a special issue (we will propose publication in a special issue of the Nordic Journal of Applied Ethics).
Date and venue of the workshop: June 4-5, 2014, at the 1902 Building at Øya, Trondheim, Norway. Abstract submission: May 1. to allen.alvarez@ntnu.no
This workshop is part of the Research Council of Norway funded ISP-FIDE project Applied Ethics: Technology and Governance of Health and Natural Resources and is arranged through collaboration between the Programme for Applied Ethics and research groups at NTNU including the Research group on the ethos of Technology (RESET), Research group for ethics, society and technology (FEST), and VERP (Verksted for praktisk filosofi).