Consents and Approvals Collated Information from Participating Centres

1
Consents and Approvals-Collated Information from
Participating Centres

• Homa Hasan
• August 2004

2
Acknowledgements

• Helen Andersson Nancy Pedersen
• Alun Evans
• Jennifer Harris
• Jaakko Kaprio
• Kirsten Kyvik
• Carlo Petrini
• Gonneke Willemsen

3
Status of Participating Centres

• Ethics Committees

4
Status of Participating Centres

• Ethics Committees
• Data Protection Agency (Datatilsynet)

5
Status of Participating Centres

• Ethics Committees
• Data Protection Agency (Datatilsynet)
• Participants

6
Status of Participating Centres

• Ethics Committees
• Data Protection Agency (Datatilsynet)
• Participants
• Present (already stored)

7
Status of Participating Centres

• Ethics Committees
• Data Protection Agency (Datatilsynet)
• Participants
• Present (already stored)
• New (to be collected)

8
Status of Participating Centres

• Ethics Committees
• Data Protection Agency (Datatilsynet)
• Participants
• Present (already stored)
• New (to be collected)
• Other Bodies / Groups

9
Ethics Committee

• Finland
• The Netherlands
• Denmark
• Italy
• N.Ireland
• Sweden
• Norway

• Not needed
• Complete
• Complete
• Complete
• Complete
• Complete / To Do
• In Process

10
Data Protection Agency

• Finland
• The Netherlands
• N.Ireland
• Denmark
• Italy
• Sweden
• Norway

• Not needed
• Not needed
• Not Needed (?)
• Complete
• Complete
• Complete /To Do
• In Process

11
Other Groups / Bodies

• Finland
• The Netherlands
• N.Ireland
• Denmark
• Italy
• Sweden
• Norway

• PIs - Complete
• None Needed
• Complete
• Complete
• None Needed
• Complete
• None Needed

12
Participants (biobanked)

• Finland
• The Netherlands
• N.Ireland
• Denmark
• Italy
• Sweden
• Norway

• None Needed
• None Needed
• None Needed
• Complete
• None needed
• In Process

13
Participants - New

• Finland
• The Netherlands
• N.Ireland
• Denmark
• Italy
• Sweden
• Norway

• None Needed
• Completed
• -
• Complete
• In Process
• -
• In Process

14
In Summary

• Finland and The Netherlands - one set of
  approvals needed, and these are complete

15
In Summary

• Finland and The Netherlands - one set of
  approvals needed, and these are complete
• Denmark is completed with approvals

16
In Summary

• Finland and The Netherlands - one set of
  approvals needed, and these are complete
• Denmark has completed all approvals
• Sweden must obtain consent for molecular genetic
  analyses (then datatilsynet)

17
In Summary

• Italy is in process to obtain consent from new
  particpants

18
In Summary

• Italy is in process to obtain consent from new
  particpants
• Norway is almost complete with the Ethics
  Committee, in process with Datatilsynet and
  participants (collected and new)

19
Addendum

• Information not available for UK and Australia