Preliminary programme: Tuesday June 15
What is the role of informed consent in medical research?
Plenary session
| 09:00 | Introduction |
| 09:15 | The moral and regulatory importance of the distinction between research and practice Tom L. Beauchamp Georgetown University, Department of Philosophy & Kennedy Institute of Ethics, USA Abstract > |
| 09:50 | Informed consent and its actors: Puzzle, maze or babel tower? Anne Cambon-Thomsen INSERM, French national centre for scientific research (CNRS), France Abstract > |
| 10:20 | Break |
| 10:50 | Keynote response Marcel Verweij Ethics Institute & Department of Philosophy, Utrecht University, the Netherlands |
| 11:20 | Response and panel discussion |
| 11:35 | Open discussion |
| 12:30 | Lunch |
The afternoon programme consists of four parallel sessions:
- Broad consent and data mining
- Autonomy and informed consent
- Consent and research subjects with limited autonomy
- Informed consent in practice
I. Broad consent and data mining
| 13:30 | How broad is a broad consent? Commercialisation of public biobanks and the role of informed consent |
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| 13:55 | Broad consent - for research, commerce or patients? |
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| 14:20 | Is informed consent to future research legitimate? |
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| 14:40 | Coffee |
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| 15:10 | General consent to utilize human biospecimen and data for future research at hospital admission: a pilot project in Switzerland |
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| 15:35 | Trading in trust - the moral economy of research on patient data |
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| 16:00 | Is consent fulfilling its role in current research practice? |
II. Autonomy and informed consent
| 13:30 | Medical research, public health ethics and the downscaling of informed consent |
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| 13:55 | Rethinking patient autonomy through Rawlsian theory |
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| 14:20 | Newborn screening: Informed consent through the back door? |
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| 14:40 | Coffee |
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| 15:10 | Ethical review and administrative governance of clinical research (MERGO): description of a research project |
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| 15:35 | Treatment decisions and informed consent |
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| 16:00 | Relational autonomy and informed consent |
III. Consent and research subjects with limited autonomy
| 13:30 | The role of 'exploitation' and consent in protecting vulnerable research subjects |
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| 13:55 | From non-autonomous research subjects to informed consent: an attempt at a coherent approach |
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| 14:20 | Consent in dementia research |
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| 14:40 | Coffee |
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| 15:10 | Genetic counseling and ethical decision-making - reformulating the principle of autonomy in clinical ethics |
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| 15:35 | Making informed consent form readable and meaningful: practical suggestions and theoretical reflections |
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| 16:00 | Multi-media educational tool (speaking book) increases knowledge of clinical trials among HIV-positive patients in Kampala, Uganda |
IV. Informed consent in practice
| 13:30 | Should potential subjects be informed researchers' financial interests and their funding sources? Reflections from the results of a survey in Taiwan |
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| 13:55 | The separation principle in practice: patients’ views on the role of the medical staff in their decisions to donate supernumerary embryos for science |
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| 14:20 | Poor quality of reports on informed consent in dissertation |
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| 14:40 | Coffee |
| 15:10 | Informed consent and phase IV medical research |
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| 15:35 | A qualitative exploratory study of service user’s experiences of being a research participant in a high secure hospital |
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| 16:00 | Paving the way to a harmonized legal platform for the sharing of human-biobank data beyond European borders |
Organisers
The conference is arranged by Cesagen at the universities of Lancaster and Cardiff and the Centre for Research Ethics & Bioethics at Uppsala University.
The Centre for Research Ethics and Bioethics is an interfaculty centre at Uppsala University.
Cesagen is a collaborative research centre which is funded as part of the ESRC Genomics Network. The Centre is based at the universities of Lancaster and Cardiff.






