Age for testing
30 years is our minimum age at present and we have no maximum. Younger patients can still have their genetic pharmacology profile done but out of our study. If they have a strong family history they could see a geneticist at The London Genetics Centre.
Are there people who might not be suitable for genetic testing?
Severe depression, bipolar disorder, psychosis, dementia and cognitive impairment or a lack of maturity are all relative contraindications. A history of depression, where recovery has been good, would, in the majority of cases, not be a contraindication. We plan to start with a minimum age for testing of 30 years and there is no upper age limit for testing. In time this may be extended to lower ages. We want to check that those who take up this opportunity are properly educated and counselled so that they can make fully informed decisions. We are clear that better education on health can potentially save lives.
Psychological effects on patients with new genetic information
We take this area seriously and will be assessing how some patients react to finding out they have an actionable gene alteration. In general, the current evidence is that for patients who are found to have a harmful gene alteration, six weeks after being given the information, they are not more stressed than those who have not been found to have a genetic alteration. We have excellent psychological support at 90 Sloane Street, if required.
Patients found to have a genetic alteration increasing their risk of disease will gain from our counselling, so as to benefit from the new knowledge and the preventative possibilities. Our team includes experts in genetic counselling. Unfortunately, many centres offering genetic testing simply send off the tests without a detailed network of high-level geneticists available to patients when abnormalities are found. There are only about 130 consultant geneticists in the country. The London Genetics Centre has deliberately built up a genetic team of broad genetic expertise.
Genetic testing and Insurance
At present UK insurance companies have issued an ongoing genetics moratorium for those taking out insurance in the UK, which means you do not have to declare gene alterations that may put you at greater risk, but this excludes Huntington’s, a degenerative neurological condition. Which means currently you do not have to declare genetic information in most circumstances. It should be noted that there are some parts of the world where there is not a genetic moratorium and patients need to declare genetic test results. We always strongly advise consulting the Code of Genetic Testing and Insurance in combination with legal advice for greater clarity on how this applies to you.
Please refer to the following key document for further information: www.abi.org.uk
If I am unable to give a blood sample are there other options?
Saliva can be a viable alternative.