Rethinking Informed Consent: The limits of autonomy, 2006
The VIII Annual Symposium on Biomedicine, Ethics and Society was held on June 12-13 2006 in Sandhamn.
The Centre for Bioethics at Karolinska Institutet & Uppsala university hosted the event in collaboration with the Nordic Committee on Bioethics, that also hosted a mini-symposium entitled Informed consent - in whose interest? at the end of the second day. The symposium had 97 registered participants and received financial support from the Vårdal Foundation for Health Care and Allergy Research and Riksbankens Jubileumsfond (the Bank of Sweden Tercentenary Foundation). Läkartidningen (the Journal of the Swedish Medical Association) contributed with advertisement.
Rethinking Informed Consent: The limits of autonomy
The VIII Annual Symposium on Biomedicine, Ethics and Society was held at Seglarhotellet, Sandhamn. The Centre for Bioethics at Karolinska Institutet & Uppsala university hosted the event in collaboration with the Nordic Committee on Bioethics, that also hosted a mini-symposium entitled Informed consent - in whose interest? at the end of the second day. The symposium had 97 registered participants and received financial support from the Vårdal Foundation for Health Care and Allergy Research and Riksbankens Jubileumsfond (the Bank of Sweden Tercentenary Foundation). Läkartidningen (the Journal of the Swedish Medical Association) contributed with advertisement.
Rethinking Informed Consent
Although of central importance to clinical practice and biomedical research, rules of informed consent have for quite some time been criticized for being too formalistic, being insensitive to the various conditions in which they are applied, setting too strict requirements when risks are small, and underestimating difficulties in communicating information. Moreover, the emphasis put on informed consent reveals how autonomy has increasingly been considered the most important ethical principle at the possible expense of other values and principles.
The symposium Rethinking Informed Consent: The limits of autonomy invited scientists and scholars from both philosophy and clinical/research settings to address these issues in order to identify the limits of informed consent in protecting the diversity of interests of patients and research subjects. More specifically, the symposium aimed to
- critically examine the ‘standard view’ of informed consent in health care and biomedical research, in terms of both its philosophical underpinnings and the practical difficulties encountered in applying it in real-life situations, and to
- develop well-argued positions on alternative forms of information and consent procedures, or alternatives to informed consent, for situations where the standard form seems less than adequate.
The symposium particularly focused on the role given to autonomy in the standard view. It ponders whether informed consent as applied gives sufficient room for all interests and values involved in health care and biomedical research.
Some of the main questions addressed were:
- How should information and consent/assent be handled in non-standard cases?
- Is the ethical principle of respect for autonomy the ‘foremost among equals’?
- Is respect for autonomy the best means to protect patients’ interests?
- Should altruism and a duty to participate in research be stressed more prominently?
- Does respect for autonomy necessarily entail non-directiveness in counselling?
- To what extent is some form of paternalism acceptable?
- What role does informed consent actually have in healthcare & research?
June 12: Plenary session
Rethinking Informed Consent: The limits of autonomy
Klaus Hoeyer, MA, Ph.D., Assistant Professor, Institute of Public Health, University of Copenhagen, Denmark
Ann Sommerville, MA, Head of the Medical Ethics Department, British Medical Association and Visiting Professor in Medical Ethics, Queen Mary College, London, United Kingdom
Anne Catherine Staff, Consultant, MD, PhD, Department of Gynecology and Obstetrics, Ullevål University Hospital, Oslo, Norway
Simon N. Whitney, MD, JD, Department of Family and Community Medicine, Baylor College of Medicine, Houston, Texas, USA
June 12: Poster presentations
June 13: Parallel sessions
Session I: Autonomy Reconsidered
Session II: Different Needs
Session III: Us and Them
June 13: Nordic Committee on Bioethics mini symposium
Informed consent - in whose interest?
The symposium focuses on informed consent in research. Critical views will be given on the use and usefulness of informed consent. Whose interests are protected? Is more information better ethics?
Angus Dawson, Senior Lecturer, Keele University, United Kingdom
Anne Gammelgaard, PhD, Institute of Public Health, University of Copenhagen, Denmark
Eugenijus Gefenas, Associate professor, Chair, National Committee on Biomedical Ethics, Lithuania
Programme with abstracts of presentations
Plenary session, June 12
Poster presentations, June 12
Parallel sessions, June 13
I: Autonomy Reconsidered
II: Different Needs
III: Us and ThemNordic Committee on Bioethics Mini symposium, June 13
List of participants (pdf)
Monday June 12:
Plenary session
| 12:00 | Lunch |
| 13:00 | Ann Sommerville, MA |
Head of the Medical Ethics Department, British Medical Association and Visiting Professor in Medical Ethics, Queen Mary College, London, United Kingdom The role of informed consent and the principle of autonomy; developments and perspectives |
|
| 14:10 | Anne Catherine Staff, Consultant, MD, PhD |
|
Department of Gynecology and Obstetrics, Ullevål University Hospital, Oslo, Associate Professor, Faculty of Medicine, University of Oslo, Norway |
| An example from clinical research: Parents - not allowed to consider experimental gene therapy for children with therapy resistant cancer? Abstract (pdf) |
|
| 14:30 | Simon N. Whitney, MD, JD |
| Department of Family and Community Medicine, Baylor College of Medicine, Houston, Texas, USA | |
| From Antithesis to Harmony: A Synthesis of Evidence-Based Medicine and Patient-Led Decision Making Printable version (pdf) |
|
| 15:30 | Coffee |
| 16:00 | Klaus Hoeyer, MA, PhD, Assistant Professor |
| Institute of Public Health, University of Copenhagen, Denmark | |
| Informed consent as organizational recipe Printable version (pdf) |
|
17:00
|
Discussion Moderator: Niels Lynöe, Professor and Deputy Director, Centre for Bioethics at Karolinska Institutet & Uppsala University |
| 18:00 | Poster presentations |
| 19:00 | Dinner |
| 20:10 | Boat departure |
| m/s Cinderella II | |
| 22:25 | Arrival , Strandvägen, Stockholm |
Is Bueachamp & Childress' priniple of respect for autonomy concordant with biomedical practice? Results from an empirical study
Mette Ebbesen, Centre for Bioethics, Aarhus University, Denmark
Waiving or altering standard informed consent for methodological reasons - points to consider in the ethics review
Margit Fässler (1) and Nikola Biller-Andorno (2)
1. University of Göttingen, Germany & 2. University of Zurich, Switzerland
Poster (pdf)
Informed consent and the expansion of newborn screening
Niels Nijsingh, Utrecht University, Ethics Institute, the Netherlands
Rationality, Informed Consent and the Enrolment of patients in Clinical trials
Tracey Stone, Centre for Ethics in Medicine, University of Bristol, United Kingdom
Do they really understand? Self reported understanding as a tool for analyzing consent
Ulrika Swartling (1) and Gert Helgesson (2)
1. Linköping University, Sweden & 2. Centre for Bioethics at Karolinska Institutet & Uppsala University, Sweden
Poster (pdf)
Note: only poster presenters who have agreed to have their posters published on this website are listed here.
Tuesday June 13
Parallel sessons
I: Autonomy Reconsidered
II: Different Needs
III: Us and Them
Session I:
Autonomy Reconsidered
| Challenges to Autonomy Moderator: Ann Sommerville |
|
08:30 |
Alasdair Maclean, The School of Law, University of Dundee, Scotland, UK |
| Autonomy, consent and persuasion Abstract (pdf) |
|
| 09:00 | James Wilson, Centre for Professional Ethics, Keele University, UK |
| Informed consent: Against respect for autonomy Abstract (pdf) |
|
| 09:30 | Sigurður Kristinson, Philosophy, University of Akueyri, Iceland |
| Autonomy and informed consent: A mistaken association? Abstract (pdf) |
|
| Lessons From the Clinic I Moderator: Anne Catherine Staff |
|
| 10:30 | Mare Knibbe & Els Maeckelberghe, Expertisecentrum Ethiek |
| in de Zorg, Groningen, the Netherlands | |
| Care for donor-autonomy in descisions about living parental liver donation Abstract (pdf) |
|
| 11:00 | Ingemar Engström, Psychiatric Research Centre, Örebro University, |
| Sweden | |
| Alternatives to autonomy as foundation for clinical ethics with respect to children and adolescents and their families Abstract (pdf) |
|
| 11:30 | Lars Sandman, Practical Philosophy, University College of Borås, Sweden |
| Broadening the scope of competency - some reflections from analysing research on persons with dementia Abstract (pdf) |
|
| 12:00 | Lunch |
| Lessons From the Clinic II Moderator: Rurik Löfmark |
|
| 13:00 | Klaisen Horstman, Rein Vos & Gerard de Vries |
| Section of Health Ethics and Philosophy, University of Maastricht, the Netherlands | |
| Voice beyond choice: Informed consent as a hinderance for normative learning? Abstract (pdf) |
|
| 13:30 | Claire Snowdon (i, ii), Diana Elbourne (i) & Jo Garcia (iii) |
| i: London School of Hygiene & Tropical Medicine, ii: Centre for Family Research, Cambridge, and iii: Institute of Education, London , UK | |
| The decision to decline to participate in a clinical trial: the need for informed refusal Abstract (pdf) |
|
| 14:00 | Heleen van Luijn, Department of Medical Psychology, |
| Erasmus MC, the Netherlands | |
Valid informed consent possible in phase II cancer clinical trials? |
|
| 14:30 | Coffee, session ends |
| Session II: Different Needs |
|
|
|
| Different Needs and Backgrounds - International Perspectives I Moderator: Niels Lynöe |
|
| 08:30 | Ulrik Kihlbom, Philosophy, Department of Humanities |
| Örebro University, Sweden | |
Autonomy and (un)informed consent |
|
| 09:00 | Dafna Feinholz Klip (i) and Miguel Moreno Muños (ii), |
| i: National Commission of Bioethics, Mexico, and ii: University of Granada, Spain | |
| Critical review of informed consent and autonomy in the context of biomedical research in developing countries Abstract (pdf) Presentation (pdf) |
|
| 09:30 | Mark Lachmann, Baffin Regional Hospital, Iqualuit, Nunavut, Canada |
| Consent and end-of-life care in the Canadian Arctic Abstract (pdf) |
|
| Different Needs and Backgrounds - International Perspectives II Moderator: Klaus Hoeyer |
|
| 10:30 | Dien Ho, Department of Philosophy, University of Kentucky, USA |
| Informed consent in rural settings: An Eastern Kentucky case study Abstract (pdf) |
|
| 11:00 | Maureen Kelley, Department of Philosophy, School of Art |
| and Humanities, University of Alabama at Birmingham, USA | |
| Autonomy's blind spots: Insights from child development and global health Abstract (pdf) |
|
| 11:30 | Stefan Eriksson, Gert Helgesson & Anna Höglund, |
| Centre for Bioethics at Karolinska Institutet & Uppsala University | |
| Rules on informed consent: A necessity or a stumbling block? Abstract (pdf) |
|
| 12:00 | Lunch |
| Exploitation, Well-being and Safety Moderator: Stefan Eriksson & Gert Helgesson |
|
| 13:00 | Carl Elliott, Center for Bioethics, University of Minnesota, USA |
| Informed consent as a tool for exploitation Abstract (pdf) |
|
| 13:30 | R. Hoedemakers, Department of Ethics, Philosophy and |
| History of Medicine, University Medical Centre St. Radboud, Nijmegen, the Netherlands | |
| Balancing autonomy against beneficence Abstract (pdf) |
|
| 14:00 | Lars Øystein Ursin, Filosofisk Institutt, NTNU, Norway |
| Informed consent and autonomy Abstract (pdf) |
|
| 14:30 | Coffee, session ends |
| Session III: Us and Them |
|
| Substituted & Preceedent Consent Moderator: Simon Whitney |
|
| 08:30 | Tobias Heinrich Duncker, Institut für Geschichte, Theorie |
| und Ethik der Medizin, Universitätsklinikum Aachen, Germany | |
| Responsibility against mere virtual autonomy Abstract (pdf) |
|
| 09:00 | Beate Indrebø Hovland, Lovisenberg Diakonale Høgskole, Norway |
The involvement of third parties in research processes – a threat to or strengthening of research subjects' interests and self-determination? |
|
| 09:30 | Lisa Furberg, Department of Health and Society, Linköping |
| University, Sweden | |
| Preceedent autonomy and advance directives - problems and possibilities Abstract (pdf) |
|
| The Individual and the Collective I Moderator: Pär Segerdahl |
|
| 10:30 | Mickey Gjerris, Danish Centre for Risk Assessment, Royal |
| Veterinary and Agricultural University, Denmark | |
In bed with the enemy - Autonomy in an interdependent world |
|
| 11:00 | Ernest Frugé,Donald Mahoney, |
| Raphaël Rousseau, Simon Whitney & Marc Horowitz | |
| A systemic perspective on patient autonomy: Reflective practice, leadership and informed consent in medical education Abstract (pdf) |
|
| 11:30 | Esther T. Koning-Talsma, Expertisecentrum Ethiek |
| in de Zorg, Groningen, the Netherlands | |
| Relational autonomy in palliative care Abstract (pdf) |
|
| 12:00 | Lunch |
| The Individual and the Collective II Moderator: Mats G. Hansson |
|
| 13:00 | Jane Kaye, the Ethox Centre, University of Oxford, UK |
| Data and samples everywhere - but what about informed consent? Abstract (pdf) |
|
| 13:30 | Niels Nijsingh, Ethics Institute, Utrecht University, the Netherlands |
| Infomed consent and the expansion of newborn screening Abstract (pdf) |
|
| 14:00 | Vilhjalmur Arnason, Centre for Ethics, University of Iceland, Iceland |
| Databank consent and scientific citizenship Abstract (pdf) |
|
| 14:30 | Coffee, session ends |
Nordic Comittee on Bioethics mini symposium
|
|
| 14:30 | Welcome |
|
|
| 14.40 | Angus Dawson, Senior Lecturer, Keele University, United Kingdom |
| Is informed consent always necessary? Abstract (pdf) |
|
| 15:30 | Eugenijus Gefenas, Associate professor, Chair, |
| National Committee on Biomedical Ethics, Lithuania | |
How informed is informed consent? |
|
| 16:30 | Coffee |
| 16:40 | Anne Gammelgaard, PhD, Institute of Public Health, |
| University of Copenhagen, Denmark | |
Informed consent in emergency research |
|
| 17:30 | Mini symposium ends |
| 18:00 | Dinner |
Funding
The symposium was arranged in collaboration with the Nordic Committee on Bioethics, that also hosted a mini-symposium entitled Informed consent - in whose interest? at the end of the second day. We received financial support from the
Vårdal Foundation for Health Care and Allergy Research
Riksbankens Jubileumsfond (the Bank of Sweden Tercentenary Foundation)
Läkartidningen (the Journal of the Swedish Medical Association) contributed with advertisement.
More information:
Centre for Research Ethics & Bioethics
Josepine Fernow, Co-ordinator, josepine.fernow@crb.uu.se
Dr. Stefan Eriksson, stefan.eriksson@crb.uu.se
Dr. Gert Helgesson, gert.helgesson@ki.se
Associate Professor Rurik Löfmark, rurik.lofmark@.ki.se
Associate Professor Pär Segerdahl, par.segerdahl@crb.uu.se
