The creation of a national biobank in the UK has been on the table for a long time. From the point of view of scientists, biobanks are a necessity in order to continue moving forward in a variety of disciplines including genetics, epidemiology and pharmacology and finding stronger links between lifestyle and disease and genetics and disease.

The creation of a national biobank received and is still receiving a lot of criticism. The main arguments are around the area of; consent, access to biobank data, privacy and the governing of biobanks. In 2003 the proposed ethics and governance framework for Biobank UK (UK’s national biobank) was released for public consultation1.  Professor John Newton the chief executive of Biobank UK made the following comment upon the release of the governance framework:

‘The project is in the interest of public health and we will be relying on the public’s goodwill to make it a success. We will not begin recruiting until we have the right ethical and scientific frameworks in place 2’.

The above quotation states three important facts surrounding UK biobanking. Firstly it is in the interest of public health, biobanks provide a convenient and cost effective recourse which is utilised by research teams all over the country, also mathematically having a larger sample size with limited variables produces more reliable statistical conclusions.

Secondly biobanks rely on the ‘public’s good will’, no-one can be forced to donate samples to a biobank in fact the council of European committee ministers stated:

‘Information and consent or authorisation to obtain such materials should be as specific as possible with regard to any foreseen research uses and the choices available in that respect 3’

Obviously upon collecting samples for a national biobank it is not possible to fully inform the participant what research their samples will be used in; however blanket consent is obtained to cover all eventualities. Using blanket consent has been a major issue as there are concerns that participants are not fully aware of what types of research their samples could be used in e.g. in genetic research, biochemical, pharmacological etc. In Sweden participants can actually abstain from certain types of research, this concept could be adapted by the UK, however all research projects in the UK have to obey there own set of ethical and legal guidelines so there is no chance of a sample donated to Biobank UK would be mistreated. 

Thirdly while setting up Biobank UK the proposed privacy and governance framework was placed in the public domain for scrutiny and comment. It was done via an official press release that indicates that the committee wished the public to feel involved and notified at every stage of the process. In my opinion science is often misrepresented in the media, which has led to a poor relationship between the public and research science. In other countries such as Sweden the public tend to trust the scientific community more, and that the scientists have the publics’ best interests at heart. This is thought to have made it easier for national biobanks to be more successful; in Iceland for example they have obtained samples from every inhabitant, providing an ideal resource to study genetic disease that are prevalent within Icelandic population.
 
Another issue is the reasons behind why someone may agree to donate samples to a population biobank. There are concerns that particularly the elderly would agree to donate because they felt the had to as the were being approached by someone of authority usually a qualified nurse 4, contact information in the fist UK biobank trial was obtained from local NHS doctors surgeries, even an indirect link between their trusted GP and biobank recruitment may make people feel more inclined to donate. However during the trials, when the participants attended the collection centres they were able to speak to a nurse and given all necessary information to insure they fully understood the process and their was no obligation for them to participate.

One final point to be addressed is who benefits from biobanks? It is unlikely that individuals who give samples to research science now are likely to benefit from scientific discoveries due to the long processes involved. However there is a case for preservation of future generations, especially if a family as a predisposition for specific illnesses such as skin cancer, heart disease or Parkinson’s disease, to help research science now may result in a life saving treatment which consequently may save the life of the individuals offspring

There can be no doubt in my opinion that biobanks are for the greater good of the human race, to enable development of life saving treatments, understanding the progression and epidemiology of diseases. By speeding up scientific developments there is the potential for many lives to be saved. 

References

1 Ethics and Governance Framework, UKBiobank, http://www.ukbibank.ac.uk/docs/EGFlatestJan20082.pdf.

2 Wellcome Trust, Medical Research Council, Department of Health (2003). Ethics and Governance Framework for UK Biobank published for comment. Joint Press Release by the Wellcome Trust, Medical Research Council and Department of Health.

3 Council of Europe committee of Ministers (2006). Recommendation of the committee if Ministers to member states on research on biological materials of human origin. Council of Europe.
4  Public Perceptions of the Collection of Human Biological Samples, The Welcome Trust.  http://www.ukbiobank.ac.uk/docs/perceptions.pdf.

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