Medical literacy is important, but not everybody is medically educated. Sometimes it is hard for the patient to know every detail and to know what is significant and potentially life-threatening and what isn’t and what questions to ask. It should be the duty of the doctors and the labs to explicitly, and in simple terms, explain what a positive or out-of-range test might mean for the patient – and sometimes even relatives.
I sit down with my cousin from another mother Pat Fahey, founder of Lynch Syndrome Ireland. Pat talks about his long lost sister in the States and her history with cancer and how she found him. Pat talks about why he started LS Ireland and his associate Roberta Horgan. https://www.aliveandkickn.org/podcast/episode/1aaf3ec6/aliveandkickn-podcast-pat-fahey.
This pretty sound piece of legislation prohibits the insurance companies from asking about genetic tests
When you apply for life insurance, you must disclose a certain amount of personal information, such as:
Family medical history
Personal medical history – Your insurer may ask for access to your medical records, but you have to provide your permission for this.
Your age
Height & weight
Whether you are a smoker or a drinker
Any prescription drugs you take
Your occupation – high-risk occupations can increase your premiums)
Any hazardous hobbies you take part in
Star sign
Pet’s name
Mother maiden name
How many photos contain traffic lights
And that’s just to name a few.
Insurers are pretty damn thorough when it comes to how they calculate your life insurance premium.
They’ll ask for as much information as they can get away with, but any genetic testing results you have are a no-fly zone. (www.lion.ie)
You won’t find a genetic testing question on a life insurance application, but you will find the following guidance:
However, it is important that you are aware that in accordance with the provisions of Part 4 of the Disability Act 2005 you should NOT disclose the result of any Genetic (DNA or RNA) test. Some medical conditions are genetic and can be passed from generation to generation. Advances in medical science have made it possible in certain circumstances to take a genetic test and to ascertain if a specific condition has been passed on. If you have had such a genetic test then you should not disclose it.
And if you look hard enough, you will also spot this paragraph:
You must disclose if you are having treatment for, experiencing symptoms of, or having investigations (other than a genetic test) for a genetic condition as well as disclosing all other conditions.
However, it is important that you are aware that in accordance with the provisions of Part 4 of the Disability Act 2005 you should NOT disclose the result of any Genetic (DNA or RNA) test. Some medical conditions are genetic and can be passed from generation to generation. Advances in medical science have made it possible in certain circumstances to take a genetic test and to ascertain if a specific condition has been passed on. If you have had such a genetic test then you should not disclose it.
And if you look hard enough, you will also spot this paragraph:
You must disclose if you are having treatment for, experiencing symptoms of, or having investigations (other than a genetic test) for a genetic condition as well as disclosing all other conditions.
An update on the latest research for people with Lynch syndrome. Presented by Matthew Yurgelun, MD (Dana-Farber Cancer Institute). (FORCE 2021 Conference)
A team of scientists in Newcastle have been awarded £2 million by NHS England, to roll out a new method of screening for cancer. Sir John and his colleagues, including Ms Rachel Phelps, a research PhD student in the Cancer Research UK-funded Cancer Prevention Group at Newcastle University, redesigned the Newcastle MSI-Plus Assay.
This has recently become the standard test in North East England to find people with LS among those diagnosed with bowel cancer. MSI, which stands for microsatellite instability, shows that an important DNA repair system isn’t working. Most LS patients are in this group. The test is being evaluated for national rollout.
People with Lynch Syndrome can benefit from screening programmes that enable cancers to be found at an early stage when they can be cured. LS carriers are at high risk of cancers of the bowel and womb, and screening is available for these using colonoscopy for the large bowel and ultrasound for the womb. Unfortunately, the urinary tract has been ignored because there are currently no cheap, non-invasive screening methods that can reliably detect tumours here. Cancer of the upper urinary tract is the third most common cancer associated with LS.
“This test can be carried out at low cost and in high numbers. It will help to identify thousands of cancers earlier, when it is easier to treat, giving a much more positive outcome for patients and families.”
If a person with cancer is detected as having Lynch syndrome, a DNA test can then be offered to their relatives to see who else has the condition, so that they can then be put on a regular programme of checks.
Gynaecological cancers refer to any cancer of the female reproductive system which includes the uterus (womb), the ovaries, the cervix (the neck of the womb), the vulva (the outer part of the female genitals) or the vagina.
Patient and public involvement throughout the project. An Irish resource for an Irish audience.
Lynch Syndrome Ireland 