Dr Blanaid Mee of the Biobank Trust Ireland outlined the role of biobanks in clinical research.

1. Blanaid Mee

2. Introduction
• What are biobanks?
• Networks
• Who biobanks?
• What do you need to biobank?
• What makes it worthwhile
• Challenges
• How we can address challenges
• Patient voice
• Future

3. Biobanks?
• How do we learn?
• Research
• Need samples to do research
• Biobank = collections of samples and their associated
data
• Cancer research – tissue, blood
• For research to be good we need samples to be
comparable i.e. all collected and treated the same way
• QC – “what it says on the tin”
• Rubbish in, rubbish out

4. Advantage of (inter)national biobank
networks
• Ireland = BIT, haematology, prostate, Breast Predict
• International = BBMRI
• Advantage of networks = numbers of sample collected
• Power of the study (sample size) = more samples, means a
greater chance of identifying something useful/make a
difference
• Herceptin – breast cancer

5. Who are biobankers?
• Eclectic group
• PhDs, Post Docs (have completed PhD),
technicians, nurses, dedicated biobank staff (rare)
• Most biobankers part of research groups
• BIT – unusual, don’t do research
• Collect for others doing research
• BIT = because not doing research, can focus on
development of national & local infrastructure

6. What you need to biobank?
• Patient who would like to donate
• A clinician who recognises need for biobanking
• Person to consent patients (nurse/doctor)
• Theatre nurses – ring the biobank
• Porters – bring the samples over
• Medical scientist/pathologist to review specimens–
consent does not always equal biobanking
• Biobank technician – collect, process samples & data
• Pathologist – review slides ( tumour tissue is
hetergeneous - QC)

7. Biobanking is about people
• Patients
• Staff within hospital who take on extra work to
allow it to happen
• No dedicated funding
• Therefore, no dedicated staff
• Most people involved do it because they
recognise the importance of biobanking to future
patients
• “good will”

8. What makes it worthwhile
• People
• Department of pathology – new tests
• Progress – within histology, so many new tests
• Nurses (theatre, clinics) – different perspective to lab
• SJH/TCD biobank committee
• SJH/TCD biobank working group - provide support,
raise concerns & ideas
• Harmonisation = better quality of service for patients
• Sample - “I could be the one that mattered”

9. Challenges
• Biobank staff expert in: science, Data Protection,
ethics, up to date with current & future down
stream applications, recognise “emerging trends”
and “future proof” processes to include them
• Most on 2/3 year contracts (renewal?/loss of
expertise)
• Data Protection: researchers want to be
compliant but area is very difficult to understand
– “surprise”, genomic data (disparity in literature)
• New legislation?

10. Challenges
• Sample volumes: 2/3 tablespoons? How much
is normally taken? How much above normal is
sample volume?
• Health literacy – NALA
• Timing of consent: “wasn’t ready”, AML
patients 3 week window for consent. Ensure
patient understands about illness before they
are consented. Word “cancer” in patient
information leaflets & consent forms.

11. Challenges
• On genomic wave (= genomic data)
• Sequencing becoming more standard (cheaper)
• Brilliant to advance our understanding of
disease/illness
• Also raises questions
• Feedback of results? Who?
• Genomic data doesn’t just affect an “individual” it
affects “families”
• What results? What’s clinically relevant?
• Genetic counselling – available?

12. How to address challenges
• ISO standards for biobanking: harmonisation
• Address issues - governance
• Biobanking guidelines for clarity – acceptable volumes
(blood, bone marrow)/numbers (biopsies) for research
– justify going outside these
• Biobanking straddles research & clinical environments
• Example of this would be consent – members of clinical
team best placed to consent patients
• Several advantages – excellent understanding of
patient state of mind & whether consenting is
appropriate

13. Patient focused biobanking
• Keep researchers patient aware
• Meeting - patient “wasn’t ready”
• Excellent to address elements of
“detachment”
• Sample = person
• If I was that person....

14. Patient voice
• Tiring
• Not easy being “patient” all the time
• Lot of responsibility
• Incredibly important
• Patient focused
• My own experience with pharma

15. Future
•ISO standards
•HRB funding linked to biobanking – would be
important to ensure environment surrounding
consent is supported
•What would patients like to see?