The Nordic Committee on Bioethics arranges conferences in the Nordic countries within the area of bioethics, with special reference to issues in life sciences, biotechnology, medicine, governance, society, and practical philosophy, including dilemmas in health care and research.
The conferences are free and open to the public. You will find information on registration under each event.
Watch videos of talks from our previous webinars and conferences on our YouTube channel
If you share or discuss NCBio events, feel free to use the hashtag #ncbioevents.
What: The moral status of stem cell-derived embryo models
When: September 14-15, 2023
Where: Reykjavik, Iceland
The Nordic Committee on Bioethics has invited some of the most prominent researchers from the Nordics and beyond, with expertise in stem cells- and embryonic research, ethics and law. They will share their research and their reflections in a closed workshop on September 14 and as a mini symposium on September 15, 2023.
Please note that the closed workshop on September 14 is only for people working within the field and invited by email by The Nordic Committee on Bioethics.
The symposium on September 15 is in collaboration with the Graduate program in molecular life sciences, BioMedical Center (BMC) at the University of Iceland. The symposium is open to the public (registration is required).
Preliminary programme for the closed workshop on September 14:
Venue: The National museum of Iceland, address: Suðurgata 41, 102 Reykjavík
Please note that the time zone is GMT/Iceland.
9:00-9:30 Coffee and pastries
Session 1 – Introduction to different areas concerning embryo models
9:45-10:15 Introduction to embryo models and embryo culture outside the uterus (Dr. Nicolas Rivron, on-line)
10:20-10:50 The 14-day rule (Dr. Robin Lovell-Badge)
Short break – coffee.
11:00-11:30 The legal status of embryos in Europe and the Nordic countries (Tesi Aschan)
11:35-11:50 The legal status of embryos, genetic targeting and the 14-day rule in Norway (Dr. Stine Indrelid)
11:55-12:25 Ethical dilemmas of embryos and embryo models (Dr. Anna Smajdor)
Session 2 – Workshop
13:15-13:45 Introduction on challenges with the progression of embryo model development – 5 min talk/speaker (Magdalena Zernicka-Goetz, Tesi Aschan, Fredrik Lanner, Anna Smajdor, Robin Lovell-Badge, Stine Indrelid)
13:45-14:45 Discussion in working groups
Session 3 – Panel discussion with representatives from each working group
15:15-16:15 Panel discussion (moderator: Arnar Pálsson)
16:15-16:30 Wrapping up the day (Commentary by Vilhjálmur Árnason).
Programme for the mini symposium on September 15
Venue: The University of Iceland (the university aula), Sæmundargata 2, 102 Reykjavík
Please visit NordForsk’s website for full programme and registration for the symposium.
Currently, the 14-day rule in science policy and regulation, limits research on human embryos (outside the uterus) to the first 14 days of gestation. This is referred to as the 14-day rule. This means, that week 3-4 of human embryonic development is something of a “black box” because scientists cannot see what is taking place in the
uterus during the early stages of gestation beyond the first two weeks. In recent years, progress has been made in early embryo research beyond the first two weeks, via “human embryo models,” developed from stem stells, and the study of mouse embryos. Making further use of these discoveries would, however, require researchers to go beyond the 14-day rule when culturing human embryos and embryo models. This raises various ethical issues, not the least concerning the ethical and legal status of such “embryo models” and it re-actualises the debate on a potential extension of the 14-day rule.
Various ethical dilemmas emerge, which forces us to think about moral principles such as the duty to prevent suffering and the duty to respect the value of human life. Where is the balance concerning the benefits these embryo models provide vs. ethical concerns? What is the legal and ethical status of human-embryo-like structures now and in the future – should it be the same for embryo models as for human embryos? What are the financial interests and how should they be regulated? Why should we want to go beyond the 14-day rule? What are the particular questions that arise from a Nordic point of view with regards to the moral status of a human embryo model and culturing human embryos beyond the 14 days?
- Magdalena Zernicka-Goetz, professor of Development and Stem Cells at the University of Cambridge, UK and California Institute of Technology, USA
- Fredrik Lanner, Assistant Professor at Department for Clinical Science, Intervention and Technology, Karolinska Institutet, Stockholm, Sweden
- Johanna-Ahola Launonen, Post-Doctoral Researcher at Aalto University, Helsinki, Finland
- Garðar Árnason, Professor of Philosophy at the University of Akureyri, Iceland
- Arnar Pálsson (moderator), Professor in Bioinformatics at the University of Iceland
- Nicolas Rivron, Group leader of the Laboratory for Blastoid Development at the Institute of Molecular Biotechnology, Vienna, Austria
- Robin Lovell-Badge, senior Group Leader and Head of the Laboratory of Stem Cell Biology and Developmental Genetics at the Francis Crick Institute, London, UK
- Tesi Aschan, Senior Legal Adviser for the National Board of Health and Welfare, Sweden
- Stine Indrelid, Senior Advisor at The Norwegian Biotechnology Advisory Board, Norway
- Anna Smajdor, Professor of Philosophy at the University of Oslo, Norway
- Vilhjálmur Árnason, Professor Emeritus of Philosophy, University of Iceland
Previous webinars and events
Events in 2022
Ethical Perspectives on Health Impacts of Climate Change
When: 22 – 23 September 2022
Where: Umeå, Sweden (and digital)
The effects and consequences of climate change are systemic and far-reaching. Public health will be affected by climate change as a consequence of increased temperatures, rising sea levels, and warming oceans. New health risks will emerge, from changes to the natural world, such as carriers of viruses and diseases and other related aspects, including the effects on human and animal habitats. What are the most pressing ethical challenges when it comes to health affected by climate change? What are our responsibilities towards future generations? What will justice in health and equal access to health care mean in a future world affected by climate change? What would rethinking justice in health within planetary limits on a heating planet look like? What are the particular vulnerabilities and responsibilities from a Nordic point of view with regards to climate change and public health?
Welcome to two half days dedicated to the theme Ethical Perspectives on Health Impacts of Climate Change. We have invited some of the most prominent researchers from the Nordics and beyond, from fields such as in bioethics, medical epidemiology, global and urban health, moral philosophy, as well as an award-winning Icelandic writer and film director. What they all have in common is that they have in various ways, raised issues related to climate change in their fields. They will share their research and their reflections in the form of presentations and conversations. There will be opportunities to raise questions.
13:00-13:45 Keynote: Health & Climate – the Scientific Facts and Ethical Reflections
Joacim Rocklöv. Humboldt Prof, Heidelberg University, Visiting Prof. Epidemiology Umeå University Dept. Public Health and Clinical Medicine.
13:45-15:15 Nordic Effects, Vulnerabilities, and Responsibilities
“Climate Change, Ethics, and Arctic Human Well-being: Reflections from research in Greenlandic Coastal Communities”
Joan Nymand Larsen. Professor of Economics, University of Akureyri, Iceland, and Stefansson Arctic Institute, Senior Scientist and Research Director. Coordinating lead author for the Polar Regions chapter of the IPCC WG-II 5th assessment report. Expertise in Arctic climate change impacts and adaptation.
“Interdisciplinarity research – Holistic view for Health and Well-being”
Watch Joan Nymand Larsen here.
Birgitta Evengård. Professor of Infectious Diseases at Umeå University, Sweden with a background in parasitology (K.I.). Expertise on infectious diseases and climate change in the north.
“Climate change and the One Health perspective in the North”
Arja Rautio. Professor of Arctic Research, VP Research U Arctic, Director of Thule Institute, Group leader for Artic Health in Faculty of Medicine, University of Oulu. Expertise on One Health and changing climate in the Arctic.
15:45-16:15 Bioethics and Moral Changes (The Bioethics Perspective)
”How Bioethics can Help Mitigate Climate Emissions”
Cheryl Cox MacPherson, Professor in Bioethics, School of Medicine, St George University of Grenada, West Indies. Editor of Bioethical Insights into Values and Policy: Climate Change and Health (Springer Press, 2016) and author of “Energy, Emissions, and Public Health Ethics” Oxford Handbook of Public Health Ethics 2019). “Why Bioethics Should Address Climate Change and How It Might Do So” (in Bioethical Insights, 2016).
Watch Cheryl Cox MacPherson here.
16:15-17:00 Mingle with speakers
9:00-9:45 Bridge between Nordic and Global Values (A Perspective of Time)
Andri Snær Magnason. Award-winning Icelandic writer and documentary film director. Books include: On Time and Water, Dreamland, Casket of Time, LoveStar, The Story of the Blue Planet, and more. Andri ran for President of Iceland in 2016 with environmental issues on his agenda and came third.
Watch Andri Snær Magnason here.
9:45-10:15 Bioethics and Moral Changes (The Bioethics Perspective)
“How to make Ecocide ethics relevant to the unbearably privileged”
Mickey Gjerris, M.Th., PhD, Associate Professor in Bioethics, Section for Consumption, Bioethics, and Governance, Department of Food and Resource Economics, Faculty of Science, University of Copenhagen. Mickey’s research focuses on the relationship between humans and nature with regard to climate change, biotechnology, food production, animal ethics etc.
10:45-11:45 Global values (A Global Ethical Perspective)
“Dilemmas of Coherence: (Human) Rights and Climate Justice in the 21st Century”
Carolyn Stephens. Honorary Professor of Urban and Global Health in the UCL Bartlett Development Planning Unit, University College London. Visiting Full Professor of Ecology and Global Health, National University of Tucuman, Argentina. Her research has focused principally on links of urban equity, environment and health, and on social and environmental justice for disadvantaged communities internationally. Stephens has lived and worked in Africa, Asia and Latin America, and has advised international UN agencies, including WHO, UNEP, UNDP, UNICEF, UNHabitat.
‘Using our resources to save lives’?
John Broome. Emeritus White’s Professor of Moral Philosophy, University of Oxford and Honorary Professor at the Australian National University. One of two philosophers involved in writing the ICCP 5th Assessment report. Author of Climate Matters: ethics in a warming world and ‘Against denialism’, The Monist, 102 (2019), pp. 110–29.
11:45-12:15 Moderated Conversations with Stakeholders
Moderator: Ellen Svenson, MA-student in Philosophy and Bioethics, Umeå University. Awarded the student of the year in Humanities 2022.
Amanda Björksell, youth representative to the UN climate conferenced COP26 in Glasgow, appointed by the National Council for Swedish Youth Organisations, LSU. Student at SLU and active in Green Party (MP) Sweden.
12:15-13:00 Panel discussions with the speakers
The ethics of pandemics: Lessons learned
Webinar: 19 – 20 May in Bergen, Norway
This was a two day conference where we looked at lessons learned from the COVID-19 pandemic.
During winter 2020-21 the Nordic Committee on Bioethics (NCBio) hosted a webinar series on bioethical aspects of the COVID-19 pandemic in the Nordic countries. The aim was to identify ethical aspects of the pandemic, to look at policies and debates with a view to differences and similarities between the countries.
The conference in Bergen was a follow up of the webinar series.
13.00-13.05: NCBIO chair Welcome
13.05-13.10: Moderator NCBio
13.10-13.30: Matti Häyry Professor of Philosophy of Management, Aalto University School of Business, Finland, on Truth-Telling
13.30-13.50: Göran Collste Professor emeritus, Linköping University, member of The Swedish National Council, on Medical Ethics Global solidarity or nationalism during a pandemic
13.50-14.10: Katharina O. Cathaoir Associate Professor in Health Law, Faculty of Law, University of Copenhagen, Denmark, on Human rights during a pandemic
14.50-15.10: Reidun Førde MD and professor emerita in medical ethics at Center for medical ethics at University of Oslo, Norway After Covid – lessons learned for bioethics
15.10-15.30: Vilhjálmur Árnason, Professor of Philosophy and Chair of the Centre for Ethics, University of Iceland Policy and Principles in a Pandemic: Moral lessons from Covid-19
15.45-16.05: 2 Commentators
Kristine Bærøe, Professor of Medical ethics and philosophy of science at Department of Global Public Health and Primary Care, University of Bergen
Kjetil Rommetveit, Associate Professor at Centre for the Study of the Sciences and the Humanities, University of Bergen
16.05-16.30: Discussion with speakers
16.30-17.00: Mingling and drinks/coffee
09.00-09.03: NCBio chair, Madeleine Hayenhjelm
09.03-09.05: Welcome by moderator Hilde Sandvik freelance journalist and podcast host
09.05-09.35: Conversation with Policymakers:
Mika Salminen, Director at National Institute for Health and Welfare, Finland
Beate Husa (KrF), Commissioner for Elderly, Health and Voluntary Sector, Bergen Kommune
Frode Forland. specialist director, The Norwegian Institute of Public Health
09.35-09.50: Short break
09.50-10.30 Conversation with stakeholders:
Lukas Virtala, Chair, The Union of The Upper Secondary School Students, Finland
Salvör Nordal, Ombudsmann for children, Iceland
Nina Langeland, professor infectious diseases, University of Bergen and member of the Corona commission, Norway
Pål Suren, researcher, The Norwegian Institute of Public Health
10.30-11.30: Comments from panelists and discussion
11.30-12.00: Break and mingling
Events in 2021
The Ethics of Artificial Intelligence in Healthcare and Research
Watch the webinar
Webinar: 2 November 2021 in Odense, Denmark
The interest in the use of artificial intelligence (AI) in healthcare and healthcare research is in rapid growth and many people from healthcare, research and not least enterprises believe this will revolutionise our healthcare system.
Implementation of the AI technology comes with many challenges, and it is necessary that implementation of it in healthcare is done with great ethical and legal care.
In the NCBio conference we discussed these challenges with input not only from ethical experts, but also from healthcare researchers and patients.
The conference was organised by the Nordic Committee on Bioethics (NCBio) in collaboration with the Department of Clinical Research at the University of Southern Denmark (SDU) and Odense University Hospital.
Webinar series: Ethics of the Covid-19 Pandemic – Nordic Perspectives
During 2020 and 2021, the Nordic Committee of bioethics (NCBIO) was hosting a webinar series on bioethical aspects of the COVID-19 pandemic in the Nordic countries. The aim was to identify ethical aspects of the pandemic, to look at policies and debates with a view on differences and similarities between the countries.
Part 5: A Health and Human Rights Perspective
When: 21 April 13:00 – 14:00 (CEST)
The fifth webinar in the series evaluates legislative responses to COVID-19 through a health and human rights lens, focusing on restrictions on movement. Using examples from European countries, including Denmark and Ireland, the extent to which governments have adopted a proportionate response will be explored.
Katharina Ó. Cathaoir, Assistant Professor in Health Law, Faculty of Law, University of Copenhagen and principal investigator of a project mapping legal responses to COVID-19 funded by the Danish Council for Independent Research.
Gro Nystuen, Assistant director of the Norwegian National Human Rights Institution.
Moderated by Janne Rothmar Herrmann, JUR Centre for Advanced Studies in Biomedical Innovation Law,University of Copenhagen and member of the NCBio.
Part 4: Justifying Policy Choices in a Pandemic
When: 19 March at 11:00 – 12:00 (CET)
The Nordic Committee of bioethics (NCBIO) is hosting a webinar series on bioethical aspects of the COVID-19 pandemic in the Nordic countries. The aim is to identify ethical aspects of the pandemic, to look at policies and debates with a view on differences and similarities between the countries.
The fourth webinar in the series will discuss the handling of the Icelandic authorities of Covid-19. Their decision making will be evaluated in light of both substantial and procedural principles of public health ethics.
- Vilhjálmur Árnason, Professor of Philosophy and Chair of the Centre for Ethics, University of Iceland
- Kristine Bærøe, Associate Professor, Department of Global Public Health and Primary Care Bergen Centre for Ethics and Priority Setting
- Janne Rothmar Herrmann, JUR Centre for Advanced Studies in Biomedical Innovation Law,
University of Copenhagen and member of the NCBio
Part 3: A bioethical approach to priority settings of vaccines. Case Norway
When: 3 February 2021, 1:00-2:00 pm (CET)
Part 3 of the webinar series is arranged in cooperation with the Norwegian Biotechnology Advisory Board.
The contribution from Norway is based on a report from a working group established by the Norwegian Institute of Public Health to advise the Norwegian government on priority settings for the COVID vaccine.
The recommendations were published in Norway in November 2020 and can be read here.
Opening of the webinar by the session chair, Truls Petersen, The Norwegian Biotechnology Advisory Board and member of NCBio
Keynote: A bioethical approach to priority settings of vaccines. Case Norway
by Reidun Førde, MD and professor emerita in medical ethics at Center for medical ethics at University of Oslo
Commentary by professor Sigur∂ur Kristinsson, University of Akureyri, Iceland, chair of the NCBio
Commentary by docent and university teacher Helena Siipi, University of Turku
Q & A
End of webinar
Part 2: Ethical choices in a pandemic – a Swedish perspective
Tuesday, November 24, 2020 at 1:00 PM – 2:00 PM (CET)
Part 2 of the webinar series is arranged by Nordic Committee on Bioethics (NCBio) in cooperation with the Swedish National Council on Medical Ethics (Smer)
The aim of this webinar is to identify ethical aspects of the pandemic, with an emphasis on examining cross-country similarities and differences regarding policy and public debate across the Nordic countries. We aim to follow the development from the outbreak of the pandemic and over time.
The contribution from Sweden is based on a report published by the Swedish Medical Ethics Council (Smer) in May 2020. The report is available here.
Opening of the seminar by the session chair, professor Ingemar Engström, Örebro University, Sweden, member of the NCBio
Welcome by professor Sigur∂ur Kristinsson, University of Akureyri, Iceland, chair of the NCBio and Lotta Eriksson, secretary general Smer
Keynote: Ethical choices in a pandemic – a Swedish perspective
by professor emeritus Göran Collste, Linköping University, Sweden, member of Smer
Commentary by professor Kirsten Kyvik, University of Southern Denmark, member of the NCBio
Commentary by professor Jan Helge Solbakk, University of Oslo, Norway
Q & A
End of webinar
Part 1: Matti Häyry: Can Crisis Leadership Be Ethics Communication?
Friday 16 October 2020 at 2-3 pm (CET)
Opening of the Seminar Series
by Professor, Chair of the NCBio Sigurður Kristinsson (University of Akureyri)
Keynote: “Can Crisis Leadership Be Ethics Communication?”
by Professor Matti Häyry, Aalto University, Finland
Commentary on the Keynote by Professor Eyja Margrét Brynjarsdóttir, University of Iceland
Commentary on the Keynote by Senior Lecturer, a Member of the NCBio Madeleine Hayenhjelm, Umeå University
General Discussion (Q&A)
End of webinar
The webinar is chaired by Docent, and Member of the NCBio Marko Ahteensuu, University of Helsinki
Events in 2020
DNA in police work. New methods. New challenges?
Webinar 23-25 September, 2020
This event, originally planned as a traditional conference in Oslo spring of 2020, was translated into a three-day webinar, keeping the original speakers but moving into a new format. Over three days, speakers from a diversity of areas such as forensic science, crime investigation, law, biochemistry and anthropology, discussed the ethical issues and developments in the practice and regulation of DNA in police work.
Wednesday 23 September:
11 am – 1.15 pm (Oslo time): Talks followed by Q&A
Thursday 24 September:
11 am – 1.30 pm (Oslo time): Talks followed by Q&A
Friday 25 September:
11 am – 12.30 pm (Oslo time). Roundtable discussion
Organizers: The Nordic Committee on Bioethics and The Norwegian Biotechnology Advisory Board
Playlist of speaker videos on YouTube
Article (in Norwegian) on forskning.no here and another article here.
In the mid-1980s, a method for identifying individuals through DNA analysis was invented. Today, DNA fingerprinting is used all over the world in cases involving criminal activity and missing persons.
These tests use part of the DNA, previously known as junk DNA, that don’t code for actual characteristics in people. This has been viewed as a strength of the method in light of privacy considerations.
However, in recent years new methods for using DNA in police work have been developed. We now have the ability to search for a partial match of a DNA profile and identify potential family members, whether in police or private ancestry databases. Another method, known as DNA phenotyping, involves genetic testing that can provide information about what an unknown suspect might look like. This method may be useful when there is no matching DNA profile in the
Both methods have been used to help solve cases. In Europe, however, only a few countries have amended its legislation to allowed new uses of DNA testing. In many countries the legal framework is uncertain.
The use of new DNA methods raises questions relating to technology, legal framework and ethics.
We will focus on the ethics of the subject and have invited people with different backgrounds to discuss topics such as:
- Which challenges are known from police work today and which are new?
- Regulation and practice in the Nordics and in Europe
- Privacy and genetic integrity
- Profiling and discrimination: Is this technology neutral or are there embedded biases?
- The ethics of visual representations: Are visual traits less stigmatising? Or the opposite?
- Technologisation: A space left for human judgment?
- Good and bad practice: The ethics of context and communication
Detailed webinar programme
Wednesday 23, 11 am – 1.15 pm (Oslo time): Talks followed by live panel discussion
Moderator: Sigurður Kristinsson, NCBIO
- Keynote: Matthias Wienroth, VC Senior Fellow, Centre for Crime & Policing, Department of Social Sciences, Northumbria University, Newcastle upon Tyne, UK
«The Ethical Governance Imperative: Forensics & Surveillance at a Crossroads»
- Jari Louhelainen, Biochemistry, University of Helsinki, Faculty of Science, University of Liverpool: «Who was Jack the Ripper? New opportunities in forensic DNA analysis: from drownings to wolfs»
12.00-13.15 Perspectives from the Nordics
- Björgvin Sigurðsson, Reykjavik municipal police: «Forensic DNA in Iceland: Past, present and possible future»
- Andreas Tillmar, University of Linköping, Sweden. «Application of investigative genetic genealogy in Sweden»
- Turid Haugen Tor, The National Criminal Investigation Service (KRIPOS) Norway: «DNA in police work in Norway»
Thursday 24, 11 am – 1.30 pm (Oslo time): Talks followed by live panel discussion
Moderator: Madeleine Hayenhjelm, NCBIO
- Keynote: Amade M´charek, prof. of Anthropology of science, University of Amsterdam
“Race Trouble and Forensic Genetics: The Case of Investigative Methods”
- Thomas Berg, Centre for forensic science, UiT The Arctic University of Norway: «Forensic DNA Phenotyping: Towards predicting human appearance from crime scene DNA»
12.00-13.30 Ethical perspectives
- Mareile Kaufman, PRIO and Department of criminology and sociology of law, University of Oslo: «The digitization of DNA evidence – What is at stake?»
- Gabrielle Samuel, Kings college London: «Ethical and social challenges of ´new´ forensic genetic technologies»
- Roos Hopman, University of Amsterdam: «Accuracy, commonality, and valuing: the differing logics of forensic DNA phenotyping»
- Jens Erik Paulsen, The Norwegian Police University College, Oslo: «Trustworthiness, emergent technology and the Dirty Harry Problem»
Friday 25, 11 am – 12.30 pm: Panel discussion and commentary. Live webinar
Moderator: Truls Petersen, NCBIO / The Norwegian Biotechnology Advisory Board
- Comments from invited guests
Shoaib Sultan, politician, NorwayHeather Dewey-Hagborg, artist, USAPer Arne Kalbakk, ethics editor NRK, NorwayEirik Natås Hanssen, scientist, Oslo University Hospital, Norway
- Live roundtable discussion
Events in 2019
Ethics of health care and research in small-scale communities
Torshavn, 12 September, 2019
The conference was held at the University of the Faroe Islands on 12 September, 2019.
Playlist with videos from the conference
Venue: University of the Faroe Islands, Kongshøll, Vestarabryggja 15, 100 Tórshavn
Providing high-quality health care and research to citizens living in small-scale communities (SCCs) raises a number of ethical challenges. SCCs are often located in geographically remote areas where resources are scarce and access to professional expertise is limited. The health care professionals and researchers working in these communities are likely to know – even be in family with – the people they treat, nurse, and invite to participate in research. This may create a number of challenges related to privacy and confidentiality.
Issues of stigmatization may also arise when the patients, who belong to a community where “everybody knows each other and everybody’s business”, suffer from mental illnesses and infectious diseases. Ethical issues may also be encountered when ethnic groups and immigrants with different perspectives and cultural values are involved. Currently, health care professionals and researchers receive little support in addressing such complex ethical issues.
A Kodak moment? The effects of consumer genetics on medicine and society
The seminar was a collaboration between The Nordic Committee on Bioethics and The Norwegian Biotechnology Advisory Board and part of the the 33rd European conference on philosophy of medicine and health care: PHILOSOPHY AND ETHICS AT THE EDGE OF MEDICINE.
You can watch any of the talks by clicking on the titles below – or watch the full playlist here
New offers of direct-to-consumer genetic testing and new ethical problems
Emilie Niemiec, Centre for Research Ethics & Bioethics, Uppsala University, Sweden
DTC GT in a Small and Homogenous Population: The Future of Health Care or a Pandora Box of Insurmountable Societal Challenges?
Henry Alexander Henrysson, Dep. of philosophy, University of Iceland / The National Bioethics Committee.
Ascertaining child’s ‘best interests’ through direct-to-consumer genetic testing: what could possibly be wrong with that?
Santa Slokenberga, medical law, University of Lund / Centre for Research Ethics & Bioethics Uppsala, Sweden
The Danish Council on Ethics recommendations about Genome Testing with focus on Direct to consumer genetic testing.
Anne-Marie Axø Gerdes, Professor, Dep. of Clinical Genetics, Rigshospitalet, Copenhagen University Hospital and The University of Copenhagen, Denmark. Chair of The Danish Council of Ethics.
Madeleine Hayenhjelm (NCBIO) and Truls Petersen (NCBIO/The Norw. Biotechn. Adv. Board)
Bioethics of clinical innovation and unproven methods
Copenhagen, 9 April 2019
The conference was organized by the Nordic Committee on Bioethics in collaboration with Centre for Legal Studies in Welfare and Market at the University of Copenhagen.
Below you can see the conference program – see slides from each talk by clicking on the titles. Abstracts for each talk can be found here.
Video playlist with talks and panel discussions
Clinical innovation involves development of new techinques, methods, treatments and diagnostics for detecting, alleviating and curing diseases. By nature novel clinical methods and treatments are unproven when first developed.
Through the centuries, medicine has advanced by trials and errors of physicians and researchers experimenting with treatments and methods. The failure of certain methods are inseperable from success of others, because a priori it is hard to know what works and what does not. The scientific method is the preferred approach to develop cures and treatments, but many current medical practices were not developed by strict scientific testing or trials. Healthcare professionals may try unproven methods, for instance as a last resort in attempt to safe a life.
Such unproven methods for clinics and health care, occur at the intersect of basic research and standard health-care and raise number of bioethical issues. Those include the following issues: Do patients have sufficient and equal access to the experimental methods? Are patients protected from harm when unproven methods are tested? Who should make decisions about when to experiment with a treatment? How can society and the health care system best simultaneously promote clinical innovation and protect patients?
Session 1 – How are clinical innovations/unproven methods developed and introduced?
“Ethics and Policy Surrounding Patient Access to Experimental Therapy”, Professor Jonathan Kimmelman, Director of Biomedical Ethics Unit, McGill Uiversity, Canada
“Experimental oncolytic immunotherapy for individualized treatment of cancer patiets incurable with routine approaches ”, Professor Akseli Hemminki , University of Helsinki, Finland
“ Developing a cancer vaccine, and challenges in performing clinical trials of experimental therapies” ,
Professor Steinar Aamdal, University of Oslo, Norway
“We can do better – a patient perspective”, Anne Sofie Boldsen Salicath, MD, Patient group representative, Denmark
Session 2 – What is the legal and regulatory environment concerning clinical innovations in medicine?
“The room for clinical innovation under Swedish law “, Senior Lecturer Lena Wahlberg, Lund University, Sweden
“The regulatory challenges in regards to clinical innovation”, Professor Mette Hartlev, University of Copenhagen, Denmark
“Regulating Risk in Surgical Innovation? A UK perspective“, Dr. Jonathan Ives, University of Bristol, UK
Session 3 – What ethical principles should guide work on emerging treatments and experimentation in hospitals?
“Novel medical treatments, innovation, hope and headlines”, Catherine Joynson, Assistant Director, Nuffield Council on Bioethics, UK
“Harms and benefits in clinical innovation“, Dr. Gardar Arnason, University of Tübingen, Germany
“Ethical principles in unproven methods – is there a need for regulations?”, Professor Ingemar Engström, Örebro University/NCBio, Sweden
List of NCBio events from 1991 to 2018
Bioethical perspectives on new developments in non-invasive prenatal diagnosis (NIPD):
Session at the World medical association conference on medical ethics
Reykjavik, 3 October 2018
Lifestyle diseases: Responsibility and Ethics – Helsinki, 11 – 12 June 2018
Read the Report from the conference here
Session at the Nordic Societal Security Programme Conference – Copenhagen, 10 March 2017
Session at #NeIC2017: Bioethics of Databanks and Datasharing – Umeå, 29 May 2017
Facing Death: End of life decisions – Reykjavik, 15 September 2017
Hard Choices in Nordic Health Care 2.0 – Stockholm, 20 November 2017
Biotechnology for a longer life – Aalborg, 9 December 2016
Gene therapy and human germline editing: New opportunities, new challenges – Oslo, 2 June 2016
Session on Sensitive Data at #NeIC2015
Helsinki, 5 May, session at the Nordic e-Infrastructure Conference 2015
Ethical Dilemmas of Consuming Animals – Seminar in Helsinki 27-28 August
Hard Choices in Nordic Health Care – Expensive treatments and priority settings
Workshop in Stockholm, 16 November
Updated version of Legislation on biotechnology in the Nordic countries
Report on biotechnological legislation in the Nordic countries
Session on Neurological Enhancement – Helsinki 10 June
Synthetic Biology; Bioethics and Biosafety – Conference in Tromsø 28 August
Whole-genome sequencing and the implications for health care – Do we have a right not to know? – Workshop in Reykjavik, 16-17 October
Report on biotechnological legislation in the Nordic countries
Reproductive technology and surrogacy. A global perspective
A conference in Reykjavik August 25-27 was arranged, which also included a PhD session
The committee participated, with the title «The role of the press and the public in exposing scientific and medical fraud», in the World Conference of Science Journalists in Helsinki June 24-28.
Perspectives on Sexual Identity and Gender
A workshop on bioethical issues in relation to sexual identity and gender was arranged in Copenhagen April 18
REGULATING SURROGACY IN THE NORDIC COUNTRIES
Focus group meeting in Copenhagen October 22
Childrens’s Participation and Decision-Making in Medical Matters
Conference in Lund, October 11-12
Hunting and Protecting of Marine Mammals – a Clash of Cultures?
Conference in Tórshavn, Faroe Islands, June 4-5
Ethical aspects on Mental Health
Conference in Helsinki October 31 – November 1
Nordic Biobanks – Opportunities and Obstacles
Conference in Uppsala in cooperation with The Centre for Research Ethics & Bioethics at Uppsala University and BioBanking and Molecular Resource Infrastructure of Sweden
A joint meeting with members from all bioethical committees in the Nordic countries took place in Copenhagen on 21 March.
Prenatal Diagnosis – Individuals and Society
Conference in Oslo 2-3 December in cooperation with Norwegian Biotechnology Advisory Board
Public Health – Ethical Issues
Conference in Reykjavik 30-31 August
Bioethics of Bioenergy
Conference in cooperation with The Finnish Parliament, Helsinki 17 November
Medical Tourism – Exploitation of vulnerable persons or a healthy supplement to the Nordic health care system?
Conference at Sigtuna, Sweden 11-12 May
Genetic Self Testing
Conference at Aarhus University, Denmark 14-15 January
Chimera Research – ethical and legal aspects
In cooperation with The Danish Council of Ethics and The Danish Ethical Council for Animals, Copenhagen 5 November.
Teaching Material in Bioethics
A workshop with the purpose to identify excellent teaching material
Bioethics of the Sea II
In cooperation with The cooperation in Fisheries and Aquaculture the committee organized a seminar in Stockholm on bioethical issues concerning Nordic fisheries
Dialogue on Dignity, Disability, Discrimination and Diagnostics
A meeting to discuss the challenges and possibilities that developments in biotechnology and changes in cultural values may create for the disabled in contemporary Nordic society.
A meeting for invited participants 19-20.10.2007 in Reykjavik.
Bioethics or biopolitics?
Is bioethics being replaced by biopolitics or vice versa?Seminar 11-12.6.2007, Hanaholmen, Esbo, Finland
Business and Bioethics Seminar in Malmö 15-16.10.2006
Informed consent – in whose interest? Minisymposium 13.6.2006, Sandhamn
Nordic Biolaw – Focus on Assisted Reproduction
A seminar at Hanaholmen in Finland 7.11.2005
Bioethics of the Sea
Workshop in Bergen, Norway 1-3.9.2005
Towards Nordic Biopolitics?
A seminar on biotechnology and bioethics.
Arranged by the Nordic Council and the Nordic Committee on Bioethics 26.1.2005 in Copenhagen.
Bioprophecy – the future of ethics and biotechnology
Think tank for invited participants 25-26 November 2004 in Denmark.
Preimplantation Genetic Diagnosis and Embryo Selection
International conference in Reykjavik 28-29.5.2004
Biomedical Research Ethics
A workshop for specialists in bio- and research ethics from the Nordic and Baltic countries in Finland 16-17.10.2003
2001 Teaching Bioethics: A Nordic workshop on how to best teach bioethics.
2000 The ethical issues in human stem cell research
1999 Who owns our genes?
1998 Bioethics committees in the Nordic countries
1996 Transgenic animals and xenotransplantation
1995 Gene therapy
1994 Predictive genetic testing
1993 Genetically modified organisms
1992 Patenting life?
1991 Risk, biotechnology and ethics