Memorandum by the Cancer Research Campaign
The Cancer Research Campaign (CRC) is a national
medical research charity established in 1923. Its mission is the
eradication of cancer. It is responsible for the support of the
majority of cancer research undertaken in UK universities and
medical schools as well as in four specialist cancer research
institutes. Campaign funded scientists and clinicians have contributed
to a number of significant "advances" in understanding
the biology of cancer, its detection and its treatment.
The CRC's current annual spend on research is
£61 million set to rise to £78 million over the next
three years. Funding is provided in the form of grants ranging
from £10,000 to £5 million pa and in duration from one
to six years.
The Campaign raises all its money from its volunteers
and supporters. It receives no Government funding directly, but
all Campaign grants to universities are matched by an infrastructure
component provided by Government.
1. What current projects involve collecting
genetic information on people in the UK? What other projects are
about to start? Are there collections of material (eg tissue samples)
that could be used to generate databases of DNA profiles?
Cancer is known to have a genetic basis and
therefore it will be essential for a proportion of CRC funded
groups to collect tissue samples from patients in order to extract
DNA and generate genetic information that can be studied.
The scientific importance of appropriate sample
collections has provided motivation for the development of a number
of initiatives. In 1999 the CRC began to develop an initiative
to establish a National Generic Tumour Bank. The MRC and ICRF
were approached and recently agreed to provide joint funding for
this sample collection. The Department of Health is aware of the
proposed tumour bank and may agree to provide additional funding.
As a result of the CRC/MRC/ICRF involvement in this initiative
a Joint Sample Collections Working Group, with appropriate expertise
and representation from the funding bodies involved, has been
set up to discuss future developments.
The aim of the National Generic Tumour Bank
is to maintain a collection of 3,000 primary tumour samples representing
23 different types of adult cancer. Patient-matched normal tissue
will accompany all tumour samples. Patient information will be
limited to details of age, sex and site of the tumour.
In addition, the CRC has agreed to provide joint
funding with the MRC in order to establish the Dundee Tumour Bank.
The aim of this collection is to store, administer and process
patient specimens from Ninewells Hospital for use by groups interested
in the p53 pathway. Panels of DNA and RNA will be generated from
the tissue collection.
Finally, the Campaign has recently provided
funding for five years to support the UK Children's Cancer Study
Group (UKCCSG) Tumour Bank. This was established in 1998 for storing
frozen tumour material as well as matching normal tissue to facilitate
biological studies to increase understanding of the molecular
genetics of childhood cancers. Links to clinical phenotype and
outcome data are retained through a coded storage system, allowing
maximum research value while assuring anonymity of the donor.
The CRC currently provides funding, through
project grants and programme grants, for a number of tissue sample
collections that are primarily used by single research groups.
In 1998 both the MRC and the CRC independently
established working groups to consider the ethical and operational
guidelines for collections of biological samples. However, the
CRC decided to carefully follow the workings of the MRC group
as it planned very wide consultation on draft guidelines. When
these provisional guidelines were produced the Campaign's Scientific
Committee agreed to adopt them and recommend to all grantees that
they should be followed. At the same time both agencies considered
what other samples collections it would be appropriate to make.
A starting point was felt to be the assessment of what collections
already existed. A questionnaire was developed and was used by
both organisations. Data received from CRC grantees is held on
an MRC database. Table 1 [not printed] provides information
on sample collections that have records held in the MRC database.
A number of key CRC grantees have yet to provide information in
response to the sample collection database survey. Information
concerning their sample collections is provided in Table 2 [not
2. Why are these genetic databases being assembled?
How are these activities funded? What practical considerations
will constrain developments? Are there alternative ways of fulfilling
All cancers are due to abnormalities of DNA.
Hence assembling such databases of genetic analyses from human
tissues for research purposes helps us understand the origins
and development of cancer. These databases may be used to identify
the genes that make individuals highly susceptible to cancer.
On the basis of this information efforts can be (and have successfully
been) made to prevent cancer developing and limit cancer mortality.
Detection of genetic abnormalities in cancer is also the starting
point for research and development of new therapies and diagnostic
tools which in time will also prevent cancer mortality.
These activities are funded by Medical Research
Charities (for example, the Wellcome Trust and Cancer Research
Campaign) and other medical funding organisations such as MRC.
Currently there is no other way of fulfilling
these medical research objectives.
3. What is the genetic information that is
being collected? How is it being stored and protected?
Among the data collected are general demographic
features (age, sex), family tree with history of disease, nature
of tumour types, and information from laboratory analyses. These
could include DNA sequence information and information from patient
samples relating to various types of genetic map.
Named information is stored on computers that
are isolated from networks and password protected and therefore
cannot be accessed by external users. Some information is stored
on disks stored locked.
Samples from some studies are fully anonymised
ie the data cannot be related back to the person from whom the
sample originated. This protects privacy and is our preferred
option where possible. However, some sample sets cannot be anonymised
and for these information is stored as indicated above.
4. How do the organisations involved see their
responsibilities regarding privacy; consent; future use; public
accountability and intellectual property rights?
The protection of patient privacy is the responsibility
of the custodian of the collection.
Samples should only be used for medical research
with the express consent of the patient (under such circumstances
they are regarded as "gifted"). If samples for medical
research are left over from, for example, surgical procedures
carried out as part of clinical management, they can be regarded
as "abandoned". However, if used under such circumstances
the samples should be fully anonymised so that no link can be
made back to the individual.
Future unforeseen use of samples should require
further consent from the individuals concerned. However, broad
consent for a wide spectrum of medical research can be obtained
if samples are anonymised.
The MRC has recently produced guidelines concerning
the use of human tissue and biological material. These guidelines
are aimed to address the ethical, legal and management issues
relating to the use of samples of human tissue for research. The
CRC has agreed to adopt these guidelines and will ensure that
they are adhered to in the future.
5. How do they see their activities in the
area of genetic databases developing in the future? What advances
in sequencing, screening and database technology are they anticipating?
With the advent of the human genome sequence
it is anticipated that an increase in the number and/or size of
databases containing genetic information, for medical purposes,
would result. The methods used in DNA sequencing and other forms
of sequence characterisation are likely to improve, further facilitating
Dr Fiona Hemsley
Head of Science Funding (Institutes and
Dr Emma Newman
12 October 2000