Memorandum by the Biotechnology and Biological
Sciences Research Council
1. The BBSRC is Britain's lead agency for
academic research in the non-medical life sciences. Its remit
is to promote and support high quality research and training relating
to the understanding and exploitation of biological systems, and
thereby to meet the needs of users which include the pharmaceutical,
healthcare, food and biotechnology industries.
2. The BBSRC has no plans to assemble human
genetic databases. However, it is highly likely that such databases,
primarily developed for medical purposes, will provide a valuable
tool for obtaining deeper insight into human biology, evolution,
diversity and the interaction of man with diet and environment.
Much of this knowledge will underpin future healthcare developments
in the longer term.
3. Comparative studies between human genetic
data and that from other species, eg mouse and established non-vertebrate
models such as C.elegans, Drosophila and yeast, will improve
our understanding of basic biological principles. It will also
refine our understanding of the extent and limitations of such
species as model systems in healthcare research, thereby underpinning
the great majority of such research which is not carried out on
humans, and helping to reduce the proportion of such work which
will need to be done on higher animals.
4. Research into the genetic basis of human
and mammalian biology is highly unlikely to require information
which is linked to named individuals. However, it is in the nature
of bioinformatics research that datasets may be repeatedly analysed
by different researchers in different ways, combining and comparing
information. It is this depth and flexibility which justifies
the high cost of collection and of generating and maintaining
5. Consequently, whilst very great care
needs to be taken in establishing, developing, maintaining and
protecting data which can potentially be linked back to individuals,
thought needs to be given to ensuring that datasets of potential
value to wider biological and medical research can be made available
to the research community on an unattributable basis.