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Paula Kim

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BBMRI Stakeholder's Forum
BBMRI Stakeholder's Forum

The document discusses biobanking and the patient perspective from the United States. It notes that while there have been discussions around single vs. tiered consent forms for biospecimen donation, a universal action plan is needed. Patients want confidence that their donated biospecimens will be appropriately shared to advance research.

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Paula Kim , TRAC- T ranslating R esearch A cross C ommunities BBMRI Stakeholder’s Forum Patient Working Group Meeting Paris, France • December 15, 2009 Biobanking and Patients : A USA Perspective
The Art of Translation… ,[object Object],[object Object]
Physical Behavioral Social Cultural Economic Political Spiritual Technological Across the Scientific and Geographic Spectrum
Who is in the Biospecimen Sandbox? ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Research and Medical PKI © 2008 All Rights Reserved Personalized Medicine Biobank ,[object Object],[object Object],[object Object],[object Object],Advocacy ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],P&P Agencies and Industry
Understanding Choices In Order To Make Decisions: What Patients Want Source: TRAC Perspectives on Costs of Cancer Care Survey-2006 ,[object Object],[object Object],[object Object]
[object Object],[object Object],[object Object],[object Object],Hide and Seek?
Ethical Consideration: Are we making the most of specimens donated by patients? ,[object Object],[object Object],[object Object],[object Object],[object Object]
ANNALS OF NEUROLOGY SEPTEMBER 2007 Which Way Is The Wind Blowing?
Legal and Regulatory Considerations: Incentives, reimbursement, custodianship, patient demands, market size, IP, technical obstacles, scientific serendipity… Which of these has the greatest influence on development and use of high impact biomarker assays in clinical settings ? Which is not fixable?
Not One Size FitsAll ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
[object Object],[object Object],[object Object],National Cancer Institute Best Practices Source: National Cancer Institute OBBR
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],National Cancer Institute Best Practices Source: National Cancer Institute OBBR
Biospecimen Boogie No One Likes to Dance Alone & How Not To Step On Toes… ,[object Object],[object Object],[object Object],[object Object],[object Object]
[object Object],[object Object],[object Object],Why We Must Get This Right…
Patient & Advocate Perspectives Don’t Leave Home Without Them Info on Biospecimen Resources: www.tracnetwork.net

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Paula Kim

  • 1. Paula Kim , TRAC- T ranslating R esearch A cross C ommunities BBMRI Stakeholder’s Forum Patient Working Group Meeting Paris, France • December 15, 2009 Biobanking and Patients : A USA Perspective
  • 2.
  • 3. Physical Behavioral Social Cultural Economic Political Spiritual Technological Across the Scientific and Geographic Spectrum
  • 4.
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  • 7.
  • 8. ANNALS OF NEUROLOGY SEPTEMBER 2007 Which Way Is The Wind Blowing?
  • 9. Legal and Regulatory Considerations: Incentives, reimbursement, custodianship, patient demands, market size, IP, technical obstacles, scientific serendipity… Which of these has the greatest influence on development and use of high impact biomarker assays in clinical settings ? Which is not fixable?
  • 10.
  • 11.
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  • 15. Patient & Advocate Perspectives Don’t Leave Home Without Them Info on Biospecimen Resources: www.tracnetwork.net