HGP and Biobanks - Biobanks in the UK, US, and Canada Flashcards
What is a biobank?
A bank of biological specimens and all data associated with those specimens
What sort of biological specimens are kept in biobanks?
Blood, tissue samples, purified DNA, saliva, urine
Are biobanks a new thing?
No, tumour tissues have historically been kept for research once removed from the patient
Which biobank is the largest project of its kind?
The UK biobank. Which is a long-term government initiated research program
How many people have contributed samples to the UK biobank?
500 000. Many have consented to continue to donate samples and clinical information for the rest of their lives
What is the 100 000 genomes project?
The UK biobank aimed to fully sequence the genomes of 100 000 people
Who was recruited for the UK biobank and the 100 000 genomes project?
They went out of their way to recruit people with rare diseases and their families and certain cancers. Also recruited people with no genetic conditions
Who gets access to the information in the UK biobank?
It is protected, but researchers can access it if they pay a fee and prove that it will benefit the public
What is a potential problem with the UK biobank?
The population of the UK is mainly white people with shared genetic history, so the biobank doesn’t really benefit everyone
Which biobank is hoping to resolve the problem of there being low ethnic diversity in the UK biobank?
All of Us in the US
Has All of Us begun yet?
No, it is still in the planning stages
Why hasn’t All of Us begun yet?
There are ethical issues with the government asking for genetic info from marginalized groups
Does Canada have a large national biobank?
No, but there are lots of smaller projects that are publicly funded
Are there privately owned biobanks?
Yes, often belong to direct to consumer testing companies
Why is there an ethical issue of equity with privately owned biobanks?
The company can sell your information to develop a treatment that they profit from but you can’t afford
