Blanaid Mee

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

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

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

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

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)

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”

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”

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?

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.

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?

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

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....

Patient voice

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

Future

•ISO standards

•HRB funding linked to biobanking – would be important to ensure environment surrounding consent is supported

•What would patients like to see?