Following the publication of the Human Genetics Commission's (HGC) first annual report last week, it was also announced that a consultative panel is to be set up which will contain approximately 100 people affected by a genetic disorder.
The panel will include not only patients, but also relatives and carers, and will act as a 'sounding board' for HGC reports and recommendations. It is also hoped that the panel will give the HGC further insight into the concerns of people affected by genetic disorders. The panel members may also be able to affect policy decisions.
Baroness Helena Kennedy, the HGC's chairperson, said 'we want to hear from people directly affected by a genetic disorder, so that they can inform us when we make our decisions. We need to learn from people who know about the reality of living with a genetic disorder, their experience in deciding whether to take a genetic test, and whether for example they have concerns about insurance and employment issues'. For more information, see the HGC website
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