CALL FOR EVIDENCE|
(issued 20 July 2000)
The Science and Technology Committee of the House
of Lords has appointed Sub-Committee IIA,
chaired by Lord Oxburgh, to conduct an Inquiry into the present
use of human genetic databases and the plans for their development.
This Inquiry has been prompted by recent and projected
advances in the techniques for genetic sequencing and the understanding
of the sequencing results. The accumulation and interpretation
of such data offers potentially enormous medical benefits. At
the same time, there are concerns about the implications for individuals
in both such medical and wider potential uses.
Many of the issues raised are to be the subject of
study by the Human Genetics Commission (HGC), one of whose primary
responsibilities is to advise the Government on a framework for
the future regulation of human genetic information. The House
of Lords Committee will investigate current and planned genetic
databases in order to provide a solid basis for discussion about
the future arrangements in this complicated area.
Definitions and Exclusions
For the purposes of the Inquiry, human genetic databases
are defined as collections of genetic sequence information, or
of human tissue from which such information might be derived,
that are or could be linked to named individuals. The definition
does not include medical histories which relate or may relate
to genetically-determined syndromes.
The focus of the Inquiry is on human genetic database
projects which already exist or are about to start. The Inquiry
does not cover the following:
- what the framework should be for regulating human
- public attitudes towards human genetic databases;
- the generalised data flowing from the Human Genome
Questions on which evidence is invited
Against that background, written evidence is invited
on the questions below, to arrive by no later than 4 October 2000.
It is recognised that individual witnesses may feel able to
address only some of these. Evidence is expected principally from
the bodies which are involved in maintaining, developing or
using human genetic databases or which are actively planning to
|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 (e.g. tissue samples) that could be used to generate databases of DNA profiles?
|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 the objectives?
|3.||What is the genetic information that is being collected? How is it being stored and protected?
|4.||How do the organisations involved see their responsibilities regarding privacy; consent; future use; public accountability; and intellectual property rights?
|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?
|6. ||What lessons should be learnt from genetic database initiatives in other countries?
Timetable for the Inquiry
It is intended to publish the written evidence received by the
end of October 2000. This will form the basis for the Committee's
further investigation of the issues in a series of public hearings
of oral evidence between November 2000 and February 2001. The
written evidence will also be available as background for the
HGC's planned public consultations on proposed guidelines for
regulating the storage, protection and use of genetic information.
The Committee will produce a report to the House in March 2001,
with recommendations addressed to Government, the HGC (as it begins
to finalise its draft guidelines on these matters) and others.
The report will be accompanied by transcripts of the hearings
and any other evidence received after the first volume of evidence
goes to print.
Any inquiries should be addressed to: Roger Morgan, Clerk to Sub-Committee
IIA, Science and Technology Committee, House of Lords, 7 Old Palace
Yard, London SW1P 3JY - telephone 020 7219 6072; fax 020 7219
0277; e-mail firstname.lastname@example.org.
This will take over the title of Sub-Committee II when the present
Sub-Committee II's Inquiry into The Aircraft Cabin Environment
is completed later in the year. Back
The first two matters have been excluded because they are central
to the HGC's responsibilities. Opportunities for public involvement
will be provided by the Commission's work programme. Back