Format

There was an introductory afternoon for Jurors on 1 November 1997, and the Jury proper took place on 8 November, and from 10—12 November 1997. Therefore, the Jury met for a period of four days during which Jurors were presented with the question, had a chance to examine evidence, interrogate expert witnesses, debate the issues and formulate a series of recommendations which could be presented to decision makers.

Evidence was received from fifteen expert witness representing a wide range of opinion on genetic testing, including perspectives from clinical genetics, sociology, general practice, psychiatry, nursing, NHS management, the private sector, the public policy maker, and the patient. After each presentation there was an opportunity to question the witnesses on points of clarification or opinion. Every afternoon was devoted to group work where the issues raised during the course of the day were debated. The final day of the Citizens' Jury was devoted to making recommendations on future policies for genetic testing for common disorders.

It was agreed that there are two types of genetic testing for common disorders: (a) Presymptomatic testing: applicable to a mendelian high risk subset, e.g. BRCA1/2 (high risk sub-group); (b) Susceptibility testing: applicable to disorders with a series of interacting genetic and environmental factors (multi-factorial). The Jury was concerned with both of these types of genetic testing, but more attention was paid to the second type as the issues raised go beyond current NHS practice, and no policies have yet been formulated in this area.

With the help of the Moderator the Jury worked through the following stages to enable them to address the question: (a) understanding genetic testing for common disorders, (b) outlining concerns and hopes for susceptibility testing, (c) specifying conditions (rules) that should be fulfilled and (d) making recommendations for policy makers.

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