Monitoring and improving ethical and medical praxis in perinatal medicine
Format
Completed research project
Report
We examined ethical praxis related to medical care of children. The first segment of this project consisted of parental attitudes and behavioural intentions among expectant parents which yielded several studies. We examined parents willingness to allow their children and children in general to participate in clinical research. Children’s participation in research is limited. However, their participation is essential for the understanding of various disorders in children and for the development of safe and age-appropriate treatments. Participation in research takes time and in the case of clinical research, involves certain risks to children that must be outweighed by the possible benefit. It is this balance between risk – benefit that is ethically important. Our desire to shield children from unnecessary harm has turned into systematic exclusion of children from the benefits of research! We found that parents were open to research and were willing to allow their children to participate. Two other studies concerning expectant parents are in preparation. We examine the interplay between medical risk status and willingness to receive information concerning risk factors. We also look at parents’ role in decision-making in the treatment of their child.
The second segment of this project is anchored in clinical praxis. We examine objective verbal and non-verbal behaviours in relation to components of ethical praxis during real-life medical consultations concerning inguinal hernia in paediatric patients. Consultations were digitally recorded and the presence of objective behaviours was scored. These behaviours were related to subjective global ratings of important aspects of the ethical praxis such as respect for integrity and components of informed consent (provision of information, patients’/parents’ understanding of information, patients’/parents’ participation in decision-making). Our results point to important situational factors such as child’s age and the duration of the consultation. Positive non-verbal behaviours, e.g. related to showing interest to the patient, were related to good ethical praxis.
Publications
Kihlbom U, Autonomy and Negatively Informed Consent, Journal of Medical Ethics, 2008;34:146-9.
Arrhenius G, The Distinction Between Therapeutic and Non-Therapeutic Research and its Ethical Relevance in Paediatric Research (in progress, commisioned for Journal of Medical Ethics)
Arrhenius, G. Review of Biobanks as Resources for Health (in progress, commisioned for Journal of Medical Ethics)
Arrhenius, G. The Ethical Evaluation of Risk in Research Involving Children (in progress)
Arrhenius, G., Kihlbom, U., Ethical problems in paediatric research. A review. (In progress)
Kihlbom, U, Informed consent - the problem of proxy decision and participation (In progress)
Rodriguez A, Tuvemo T, Hansson MG. Parents’ perspectives on research involving children. Upsala Journal of Medical Sciences 2006;111(1):73-86.
Miscellaneous
Hansson, Kihlbom och Rodriguez, participated in the III annual symposium on Biomedicine, Ethics and Society, 28-29 maj 2001, Sandhamn.
Rynning, participated in a symposium at the annual meeting for "Svensk Förening för Obstetrik och Gynekologi", Linköping, augusti 2001. Speech entitled "Rättsliga aspekter på sena aborter och för tidigt födda barn"
Arrhenius presented a draft for the article, "Ethical problems in paediatric research. A review" at multi-disciplinary research seminar arranged by the Research Program Ethics in Biomedicine, December 2001 at the Department of Public Health and Caring Sciences.
Presentation of the research project at a meeting with the Uppsala University Hospital (Akademiska sjukhusets) group for Perinatal Ethics, April 15 2002.
Arrhenius presentated a draft for the article "The Distinction Between Therapeutic and Non-Therapeutic Research and its Ethical Relevance in Paediatric Research", at multi-disciplinary research seminar arranged by the Research Program Ethics in Biomedicine, September 2002, at the Department of Public Health and Caring Sciences.
Oral presenation from Rodriguez at the 22nd Annual Conference of the Society of Reproductive and Infant Psychology. Sheffield, England "Pregnant women's beliefs and intentions concerning children's participation in medical research" (Rodriguez, A. & Hansson, M.G.) 10-13 September 2002.
Rodriguez och Hansson participated in the national symposia on Ethics in Care, October 2, 2002, arranged by the Foundation for Health Care Sciences and Allergy Research, Ethics in Health Care Programme.
Arrhenius participated in the workshop "Using ethics in multidisciplinary research into the ethical, social, legal and policy aspects of biomedical science", December 9, 2002, Regent's College, London.
Planning of the V Annual Symposium on Biomedicine, Ethics and Society, "Ethics at the Beginning of Life", June 2-3, 2003, Sandhamn, Kilhbom & Rodriguez.
Abstract presentations at the V Annual Symposium on Biomedicine, Ethics and Society, "Ethics at the Beginning of Life", June 2-3, 2003, Sandhamn, by Kihlbom, Rodriguez, Arrhenius & Rynning.
Arrhenius lectured on "Ethical Issues in Population Policy" for graduate students in the course Current Controversies in Applied Ethics, Faculty of Philosophy, University of Oxford, June 12, 2003.
Arrhenius presented an article manuscript entitled "The Distinction Between Therapeutic and Non-Therapeutic Research and its Ethical Relevance in Paediatric Research", The Ethics Prepublication Seminar, Centre for Applied Ethics, Faculty of Philosophy, University of Oxford, 1 juli 2003.
More information
- Ulrik Kihlbom, PhD
Project group
Mats G. Hansson, Professor of Biomedical Ethics
Alina Rodriguez, PhD, Department of Psychology
Elisabeth Rynning, Professor of Medical Law
Collaborators:
Gustaf Arrhenius, PhD
Department of Philosophy, Stockholm University
Uwe Ewald, Associate Professor
Pediatrics, Uppsala University Hospital
Ulrik Kihlbom, PhD
Leif Olsen, Associate Professor
Surgery, Uppsala University Hospital
Torsten Tuvemo, Professor
Pediatrics, Uppsala University Hospital
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