Post by Camb Genetics Knowlege Park on Jun 10, 2004 12:25:04 GMT
The Cambridge Genetics Knowledge Park is one of six knowledge parks throughout England and Wales dedicated to bringing together different areas of expertise in medical genetics to create benefits for the community as a whole. At the Knowledge Park we believe that difference should be celebrated. It is what makes us unique, individual and special and it is what makes our society work so well. However, we are also aware that society is structured in a way that makes it harder for people with certain inherited physical or mental differences to act or interact in the same way as others. This can impact on their lives and the lives of those who love and care for them. Where this is the case, the Genetics Knowledge Park and the health professionals we represent endeavour to understand the genetic basis for such inherited difference. We aim to use this knowledge to help those whose lives are made harder by genetic difference to overcome the challenges they face.
One of the groups the Knowledge Park is interested in is those with ‘learning disability’. Learning disability is an umbrella term used to group people with similar conditions together so as to ensure they receive appropriate recognition, help and support. Generally, it refers to someone who finds it harder to learn, reason, or interact than others. It is also used to refer to situations where a child’s ability to learn is not yet clear.
Learning disability may be caused by a variety of factors. However, in many groups that exhibit learning disability symptoms – particularly where those symptoms are severe – there seems to be an abnormality or difference in their genetic make-up that can be said to have caused the condition. We believe that, as the science and our knowledge advances, even more learning disabilities may be seen to have a genetic cause.
Even now we have in our possession more and more tests that can help us identify the underlying genetic cause of learning disabilities. In many cases there are benefits to be gained from a genetic test. Sometimes it may help us find a treatment. In other instances, it can inform parents about the possibility that any further children they have might also have special needs. Or, it might reveal that the child with the learning difficulty is unique and other family members, their children and descendants will not be affected by the condition. In other cases the benefit of a genetic test isn’t so clear and the test will only provide raw data in the form of a diagnosis.
Is simply knowing something’s root cause enough? Are there times when it is better not to know? How could we improve the way a test is undertaken, delivered and followed up? We think these are important questions that need to be addressed.
It’s vital to draw on the experience of people who are affected by a learning disability regarding how obtaining a genetic diagnosis has impacted, or could impact, on their lives. We aim to use this information and advice to draw up guidelines on the way genetic testing for learning disability occurs. As part of this process, we plan to undertake discussion groups in Cambridge and London (travel and care costs can be reimbursed) supplemented by online forums. We are also happy to hear the personal stories of those unable to participate in the above events.
If you, a family member, or someone you care about has a learning disability we would greatly appreciate your expertise and experience. If you would like to be involved, please contact me (Brendan Gogarty) by email brendan@srl.cam.ac.uk , phone 01223 740784 or by post [Cambridge Genetics Knowledge Park, Strangeways Research Laboratories, Worts Causeway, Cambridge CB1 8RN]. We hope you can raise our awareness, because in this instance it is you who are the experts and we who need to be educated. Your unique contribution is valuable to us, so please help us make a difference.
One of the groups the Knowledge Park is interested in is those with ‘learning disability’. Learning disability is an umbrella term used to group people with similar conditions together so as to ensure they receive appropriate recognition, help and support. Generally, it refers to someone who finds it harder to learn, reason, or interact than others. It is also used to refer to situations where a child’s ability to learn is not yet clear.
Learning disability may be caused by a variety of factors. However, in many groups that exhibit learning disability symptoms – particularly where those symptoms are severe – there seems to be an abnormality or difference in their genetic make-up that can be said to have caused the condition. We believe that, as the science and our knowledge advances, even more learning disabilities may be seen to have a genetic cause.
Even now we have in our possession more and more tests that can help us identify the underlying genetic cause of learning disabilities. In many cases there are benefits to be gained from a genetic test. Sometimes it may help us find a treatment. In other instances, it can inform parents about the possibility that any further children they have might also have special needs. Or, it might reveal that the child with the learning difficulty is unique and other family members, their children and descendants will not be affected by the condition. In other cases the benefit of a genetic test isn’t so clear and the test will only provide raw data in the form of a diagnosis.
Is simply knowing something’s root cause enough? Are there times when it is better not to know? How could we improve the way a test is undertaken, delivered and followed up? We think these are important questions that need to be addressed.
It’s vital to draw on the experience of people who are affected by a learning disability regarding how obtaining a genetic diagnosis has impacted, or could impact, on their lives. We aim to use this information and advice to draw up guidelines on the way genetic testing for learning disability occurs. As part of this process, we plan to undertake discussion groups in Cambridge and London (travel and care costs can be reimbursed) supplemented by online forums. We are also happy to hear the personal stories of those unable to participate in the above events.
If you, a family member, or someone you care about has a learning disability we would greatly appreciate your expertise and experience. If you would like to be involved, please contact me (Brendan Gogarty) by email brendan@srl.cam.ac.uk , phone 01223 740784 or by post [Cambridge Genetics Knowledge Park, Strangeways Research Laboratories, Worts Causeway, Cambridge CB1 8RN]. We hope you can raise our awareness, because in this instance it is you who are the experts and we who need to be educated. Your unique contribution is valuable to us, so please help us make a difference.