Select Committee on Science and Technology Fourth Report


20 MARCH 2001

By the Select Committee appointed to consider Science and Technology.

Ordered to Report

Challenges and Opportunities

  1. Human beings, like all living things, have within them a blueprint - their genome, containing their set of genes - that helps determine their individual characteristics. For the very first time, it is becoming possible to read that blueprint and, moreover, to begin to understand what it means. The United Kingdom has made a significant contribution to the major scientific advances underlying this new knowledge.
  2. It is certain that understanding the genome - through the new science of genomics - will bring substantial improvements in medicine. Some are with us already and others will follow over coming decades. For those who want to know, it is already possible to alert them to certain inborn pre-dispositions to conditions such as breast cancer and to allow early screening or other measures. It will eventually become possible to make drugs much more effective by tailoring them to the needs of particular individuals and avoiding drugs that either will not work for them or may have unacceptable side effects. It may also become possible to correct faults in the blueprint - gene therapy.
  3. To realise these benefits it is essential to understand how the genes work. This involves studying both genetic data and the medical histories of many individuals. In this way it will be possible to establish whether particular medical conditions are associated with particular genetic features and/or lifestyles. Genetic information is obtained by analysing human biological samples (such as blood or saliva), perhaps many years after the sample was collected. So that comparisons of very large numbers of samples can be made, genetic and other relevant information is accumulated in computerised databases.
  4. Information about individuals and their health can be very sensitive - and genetic data are particularly so. Our present understanding of what genetic data mean for health is very limited. As the meanings are discovered, however, the information will say something about family members as well as the individual directly concerned. In view of these sensitivities, our Inquiry has paid particular attention to how data held in genetic and allied databases are collected, protected and used.
  5. The challenge is to find a way of protecting the interests of individuals while at the same time making essential information available to medical researchers. Meeting that challenge will allow opportunities for new discoveries which can then be turned into valuable treatments to help future generations.
  6. A very great deal of medical practice is based on what doctors have learned from treating earlier generations of patients. We believe that most people appreciate this and, subject to reasonable safeguards for their personal privacy and concerns, are only too glad for information about them to be used to help others. That said, some individuals could have reservations about particular kinds of research. Personal information must, therefore, be safeguarded to the highest standards and, as is both possible and appropriate for most purposes, used anonymously. This may involve completely de-linking identifying information from the data, or using a secure code held by a trusted third party. Any particular reservations expressed by the individual should be linked with their information.
  7. The Data Protection Act 1998 offers significant protection to individuals over the use of their personal data. It is, however, the nature of research that there are always surprises around the corner. There may be future imperatives to use non-anonymised data in ways that could not be foreseen when samples are collected. It may often be impracticable - and may also be unnecessary - to consult individuals about this. Among our various recommendations, we propose a new independent body, the Medical Data Panel, to safeguard their interests. The Panel would also have responsibility for overseeing research using data from cancer and other disease registries.
  8. An important novel research project is about to be launched by the Medical Research Council (MRC) and The Wellcome Trust in collaboration with the Department of Health. This will involve genetic studies and analyses of the health of half a million volunteers. This project has the potential for making major contributions to health care and the development of new treatments. It will involve mutually supportive partnerships between industry and the public sector. There may well be difficult questions over intellectual property and patenting but these should be soluble.
  9. This project, and the many similar studies that will certainly follow, will make massive demands on computing technology that needs to be supported by people with skills which are already in short supply. Shortage of human resources may well limit future UK contributions in this important area. We give our full support to current efforts to provide training in the necessary statistical, computing, medical and biological disciplines.
  10. In the United Kingdom, the National Health Service (NHS) records provide a unique reservoir of information on the health of the nation but, to a large extent, they are not in a form that allows them to be used in support of the genetic and other studies that are in prospect. It is urgent that the NHS should adopt and implement uniform standards and protocols for medical records. This is important not only for genetic studies but also for broader considerations relating to the health of the nation.
  11. Underpinning our detailed recommendations[1] is our belief that the United Kingdom is uniquely positioned in the field of genetics. To succeed, we must:
    • ensure that we have a regulatory regime that is sympathetic to the work, but which offers individuals the privacy they have a right to expect; and
    • do all we can to ensure that the work has the considerable financial and human resources on which it will depend.

1   Set out in paragraphs 1.11 to 1.29. Back

previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2001