Select Committee on Science and Technology Appendices to the Minutes of Evidence


Memorandum submitted by the British Society for Human Genetics

What effect could the use of test results have on research in the UK?

  The BSHG would like to differentiate between the generation of results from recognised service laboratories and from research laboratories. In the former case we understand that only results of tests approved by GAIC can be divulged to an insurance company. These tests are already understood and data generated from them is reliable. We would however caution against reading more into approved test results than the current scientific evidence base allows. For instance a particular genotype may raise the risk of the development of a disease but there remains a wide spectrum of age of onset or severity and course that cannot be predicted with certainty from the genotype. This level of uncertainty is the subject of research and further work in this area leading to greater understanding of the relationship between genotype and phenotype would be welcome.

  In the latter case—test results generated as a result of research projects—we are firmly of the view that the existence of such results should not be required to be divulged for insurance purposes. These tests will not be approved by GAIC and are therefore irrelevant for insurance purposes. Any such requirement would inhibit patients and their families from willing participation in research studies and would be considered an unethical pressure on subjects.

To your knowledge, what scientific evidence have those involved in the area based their decisions upon, and how reliable is it?

  The tests currently considered by GAIC have been based on a sound body of scientific evidence. However as pointed out above the relationship between genotype and phenotype (disease course and severity) in nearly all genetic conditions is poorly understood. Great caution should therefore be exercised in going beyond the current evidence base.

How effective do you feel the current regulatory system is?

  We are aware that some genetic professionals involved in the regulatory mechanism are uneasy at attempts to push the system to the limit of the boundaries set. In our view the system should be reviewed in the light of the experience to date and in the context of international thought and policy making in this area.

22 January 2001

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