Select Committee on Science and Technology Fourth Report


Call for Evidence

(issued on 20 July 2000)

The Science and Technology Committee of the House of Lords has appointed Sub-Committee II, 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 genetic databases;
  • public attitudes towards human genetic databases; and
  • the generalised data flowing from the Human Genome Project.

(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.)

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 do so.

  1. What current projects involve collecting genetic information on people in the United Kingdom? 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.

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