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The National Cancer Research Institute (NCRI) has
today (Friday) launched a broad policy template on sharing research data and
biological samples, which will help to streamline the governance requirements
for biomedical research which uses such resources.
Working in partnership with the National Cancer Intelligence Network (NCIN)
and onCore UK, the NCRI have produced a "how-to" guide for
custodians of databases and biobanks to assist them in developing their own
policies for deciding on how to grant other researchers access to important
research resources they hold.
The template will help them to ensure that their data and sample sharing policies
are legal, ethical and effective.
Reducing unnecessary duplication of data and sample collection by sharing more
effectively will help to ensure that public money and charitable funds are used
in the most efficient way, and it will speed up research to benefit patients.
Professor Sir Kenneth Calman, chair of the NCRI, said:
"The creation of an access policy can be daunting; it is often easier
to say no to sharing, and avoid the difficulty, than to venture to say yes.
But there is a great deal to be gained if we can all say yes more often."
The guide will also help to ensure that researchers seek informed consent when
collecting data and samples, so that they can be securely shared with other
researchers at a later date, if desired.
Mr David Ardron, chair of the NCRI Consumer Liaison Group, which brings together
people who have been affected by cancer to consult with cancer organisations
on research issues, said:
"When we ask them, cancer patients are often surprised or even
dismayed by how little use we make of their samples and information. Where
patients agree to it, we have an ethical duty to generate the most knowledge
possible from the data and samples they provide."
The template is written so that each organisation can adopt or adapt points
that are relevant to their circumstances, ensuring that any policy developed,
reflects best practice in a consistent manner.
Although organisations can modify the terms in the template to suit their needs,
greater consistency between access policies will help to encourage researchers
to share samples and data with the confidence that they do so in a way that
is consistent with regulatory requirements.
Mr Chris Carrigan, head of the NCIN, said:
"The goal of this document is to enable the responsible sharing
of data and samples for the benefit of all: patients, the public and researchers."
Dr Brian Clark, chief executive of onCore UK, said:
"This template will be a very welcome tool for those running biobanks.
It has helped onCore UK develop its own Access Policy and will be useful when
advising others in the field to develop or revise their own policies. It is
clearly written, easy to use and authoritatively deals with the issues that
must be considered when providing access to samples and data. Furthermore,
having been prepared after wide consultation it reflects a broad consensus
of opinion and current best practice."
The NCRI are looking for organisations to pilot use of the template and give
feedback on it, so that it can be improved in the light of experience. It will
also be updated in response to any regulatory changes.
Cancer Research UK
Together with its partners and supporters, Cancer Research UK's vision is
to beat cancer.
*
Cancer Research UK carries out world-class research to improve
understanding of the disease and find out how to prevent, diagnose and treat
different kinds
of cancer.
* Cancer Research UK ensures that its findings are used to improve the lives
of all cancer patients.
* Cancer Research UK helps people to understand cancer, the progress that is
being made and the choices each person can make.
* Cancer Research UK works in partnership with others to achieve the greatest
impact in the global fight against cancer.
For further information about Cancer Research UK's work or to find out how
to support the charity, please call 020 7009 8820 or visit their website (link
at bottom of this page).
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in the article above are not necessarily those of IvyRose Ltd.. Material in
this news item was released by Cancer Research UK on 19
June 2009 and may have been edited (e.g. in style,
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