Centre for Research Ethics & Bioethics (CRB)
Is medical ethics really in the best interest of the patient?

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:

  1. Broad consent and data mining
  2. Autonomy and informed consent
  3. Consent and research subjects with limited autonomy
  4. 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
Kristin Solum Steinsbekk 1; Berge Solberg 2
1Norwegian University of Science and Technology NTNU, Department of Social Work and Health Science, Trondheim, Norway; 2Norwegian University of Science and Technology NTNU, Department of Community Medicine and General Practice, Trondheim, Norway
Abstract >

 

 

13:55

Broad consent - for research, commerce or patients?
Bjørn Hofmann
University College og Gjøvik and University of Oslo, Health, Care and Nursing, Gjøvik, Norway
Abstract >

 

 

14:20

Is informed consent to future research legitimate?
Gert Helgesson
Karolinska Institutet, Stockholm Centre for Healthcare Ethics, LIME, Stockholm, Sweden
Abstract >

 

 

14:40

Coffee

 

 

15:10

General consent to utilize human biospecimen and data for future research at hospital admission: a pilot project in Switzerland
Hans-Anton Lehr 1; Nicole Probst-Hensch 2; Michelle Salathé 3; Bernice Elger 4; Daniel Simeon-Dubach 5
1University of Lausanne, CHUV, Department of Pathology, Lausanne, Switzerland; 2Swiss Tropical and Public Health Institute, Associated Institute of the University of Basel, Basel, Switzerland; 3SAMW, Juriste, Basel, Switzerland; 4University of Geneva, Center for Legal Medicine, Geneva, Switzerland; 5Biobanque Suisse, Direction, Bern, Switzerland
Abstract >

 

 

15:35

Trading in trust - the moral economy of research on patient data
Ann Rudinow Sætnan
Norwegian University of Science and Technology (NTNU), Dept of Sociology and Political Science, Trondheim, Norway
Abstract >

 

 

16:00

Is consent fulfilling its role in current research practice?
Sandra Reid
University of Otago, Health Research Council of New Zealand, Bioethics Centre, Legal and Ethics, Dunedin, Auckland, New Zealand
Abstract >

 

II. Autonomy and informed consent

 

13:30

Medical research, public health ethics and the downscaling of informed consent
Maya Peled-Raz
University of Haifa, Int. Center for Health, Law and Ethics, Faculty of Law and the School of Public Health, Haifa, Israel
Abstract >

 

 

13:55

Rethinking patient autonomy through Rawlsian theory
Chuan-Feng Wu
Academia Sinica, Institutum Iurisprudentiae, Taipei, Taiwan
Abstract >

 

 

14:20

Newborn screening: Informed consent through the back door?
Ellen Wright Clayton 1; Lainie Friedman Ross 2
1Vanderbilt University, Center for Biomedical Ethics and Society, Nashville, TN, United States; 2University of Chicago, MacLean Center for Clinical Medical Ethics, Chicago, IL, United States
Abstract >

 

 

14:40

Coffee

 

 

15:10

Ethical review and administrative governance of clinical research (MERGO): description of a research project
Elina Hemminki1; Piret Veerus2; Jorma Virtanen2
1National Institute for Health and Welfare, Helsinki, Finland; 2University of Helsinki, Department of Public Health, Helsinki, Finland
Abstract >

 

 

15:35

Treatment decisions and informed consent
Ellen Kristvik
Akershus University Hospital, Helse Sør-Øst Health Services Research Centre, Lørenskog, Norway
Abstract >

 

 

16:00

Relational autonomy and informed consent
Ulrik Kihlbom
Uppsala University, Centre for Research Ethics & Bioethics (CRB), Uppsala, Sweden
Abstract >

 

III. Consent and research subjects with limited autonomy

 

13:30

The role of 'exploitation' and consent in protecting vulnerable research subjects
Phil Bates
The Open University, Centre for Law, Milton Keynes, United Kingdom
Abstract >

 

 

13:55

From non-autonomous research subjects to informed consent: an attempt at a coherent approach
Andreas Dimopoulos
University of Liverpool, Law Faculty, Athens, Greece
Abstract >

 

 

14:20

Consent in dementia research
Søren Holm
University of Manchester, School of Law, Manchester, United Kingdom
Abstract >

 

 

14:40

Coffee

 

 

15:10

Genetic counseling and ethical decision-making - reformulating the principle of autonomy in clinical ethics
Gabriela Brahier
University of Basel, Systematische Theologie/Ethik, Basel, Switzerland
Abstract >

 

 

15:35

Making informed consent form readable and meaningful: practical suggestions and theoretical reflections
Hsiu-I Yang
National Yang Ming University, Publich Health, Devision of Law and Policy, Taipei, Taiwan
Abstract >

 

 

16:00

Multi-media educational tool (speaking book) increases knowledge of clinical trials among HIV-positive patients in Kampala, Uganda
Gavin Robertson 1; Soeren Rasmussen 2; Richard Hubbard 2; Kevin Newell 3; Margaret Denty 1; Yukari Manabe 1
1Makerere University, Infectious Diseases Institute, Faculty of Medicine, Kampala, Uganda; 2Pfizer, Inc, Medical Division, New York, United States; 3Clinical Monitoring Research Program, SAIC-Frederick, Inc., NCI-Frederick, Frederick, Maryland, United States
Abstract >

 

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
Hung-En Liu
National ChengChi University, College of Law, Taipei, Taiwan
Abstract >

 

 

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
Veerle Provoost ; Guido Pennings
Ghent University, Bioethics Institute Ghent, Ghent, Belgium
Abstract >

 

 

14:20

Poor quality of reports on informed consent in dissertation
Sofia Kjellström
University of Jönköping, Institute of Gerontology, Jönköping, Sweden
Abstract >

 

 

14:40

Coffee

   
15:10

Informed consent and phase IV medical research
Rosemarie Bernabe 1; Ghislaine JMW van Thiel 1; Jan AM Raaijmakers 2; Johannes JM van Delden 1
1Utrecht University Medical Center, Julius Center, Utrecht, Netherlands; 2GlaxoSmithKline, External Scientific Collaborations, Zeist, Netherlands
Abstract >

 

 

15:35

A qualitative exploratory study of service user’s experiences of being a research participant in a high secure hospital
Ben Johnson1; Tracy Wilkins2; Catherine Mills3
1Ashworth Hospital, Mersey Care NHS Trust, High Secure Services, Liverpool, United Kingdom; 2Ashworth Hospital, Mersey Care NHS Trust, Nurse Therapist/Research Lead, High Secure Services, Liverpool, United Kingdom; 3c/o Lindsey Dyer, Mersey Care NHS Trust Headquarters, Users & Carers, Liverpool, United Kingdom
Abstract >

 

 

16:00

Paving the way to a harmonized legal platform for the sharing of human-biobank data beyond European borders
Yi-Chen Su
National Yang Ming University, Institute of Biomedical Informatics, Taipei, Taiwan
Abstract >



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.

Uppsala universitet

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.

Cesagen Cardiff University Lancaster University

In collaboration with:

Akademiska sjukhuset

Main sponsor:

Journal of Internal Medicine

More information