We are all mutants, did you know that? There are no perfect humans, every single one of us have some mutation in our DNA, spelling mistakes they call them.
For some, these mutated parts of our DNA can mean absolutely nothing but for so many more they can mean we suffer from diseases, mental health problems, and all manner of ailments. It is our genes, our DNA, along with family history, that dictate how susceptible to cancer we are, how likely we are to develop Parkinson’s Disease or catch malaria if we travel abroad.
Did you also know that you can have your genome sequenced (DNA tested) by private companies online to find out how likely you are to get these diseases? Me either, I found out reading The Language Of Life, a fascinating book by the genetic researcher, Francis Collins M.D Ph.D.
The two biggest online DNA testing companies, 23andMe and deCODEme, will decode your DNA and publish your details in a private account on their website, telling you about your chances of developing various cancers, gallstones, glaucoma, diabetes, asthma, arthritis and a whole host of other conditions. They send you a vial to spit in or a mouth swab, you send it back and within a few weeks your results are ready.
Mummy Mad from TheMadHouse had reason to be tested under the NHS after her aunt contracted a rare type of cancer and through a genetic test they found that her mother carried a genetic spelling mistake on the BRCA 1 gene, which drastically increases your chances of contracting breast and ovarian cancer, and that it could have been passed on to her.
Before Mummy Mad could even undergo the test to see if she too carried the spelling mistake, the family had to have counseling to prepare them for the possible outcome.
They did find the same spelling mistake in Mummy Mad’s BRCA 1 gene which meant that, due to her family history, she had an 80% lifetime risk of breast cancer, a 60% lifetime risk of ovarian cancer and was more susceptible to a number of other cancers too. After a mammogram, an MRI, a colonoscopy, a gasgoscopy and an ultrasound she elected to have her ovaries and fallopian tubes removed and later to have a bi-lateral prophylactic mastectomy with an immediate reconstruction.
‘I am glad that I had the test, it allowed me to do something positive regarding the cancer, but saying that I would not have a blanket DNA test.’ Mummy Mad said when I asked her about what she thought of these online DNA tests. ‘In my family we were all aware that we had a risk of cancer, especially with the family history, so I don’t think it came as a complete surprise for us.’
‘I have to live with the fact that I may have passed my spelling mistake on to my children, I wouldn’t want to add to that realisation with a blanket test. What if they identified an incurable, untreatable disease? I couldn’t live with a time bomb and the thought of finding something untreatable in my children would devastate me. Also when would you tell them, would you change the way in which you are bringing them up?’
‘From my perspective we made the right decision for the family with the information we had at the time. I was unlucky that the reconstruction failed. But I would not subject me and my family to a private test, so I guess I am pretty much against private testing.’
Genetic researcher and author of The Language Of Life, Francis Collins, tells of his experiences in getting his DNA tested with three of the well known online companies and shares his results in his book. Whilst they didn’t find anything devastating for his family it did change the way he looks after himself.
Even though, as a physician, he knew about the benefits of regular exercise and eating well he hadn’t really done anything about it until he found out that he has an above average chance of suffering from diabetes and obesity. At that point he started taking better care of himself, following the rules he knew he should have been following all along. The health advice became more relevant to him.
He believes we are at the front line of a revolution and predicts a future in which medicines and treatments will be personally tailored to our genes and is almost certain that complete genome sequencing will become part of newborn screening in the next few years.
For anybody interested in this subject or considering having their DNA tested, I thoroughly recommend reading The Language Of Life. It’s a fascinating guide book of what you need to know about genetic testing and how it can benefit you and your families health; it covers how genes affect general health, the brain, cancer, aging and where he believes genome sequencing will take us in the future and the uses it will have.
Reading it, I became convinced that having mine and my husbands DNA tested was the way to go, that we should find out what we are susceptible to and take more precautions for the sake of our children. I thought that even if it came back telling me I had a really high chance of contracting dementia in old age, that it would help, allowing me to take these things into consideration when planning life and the future.
However, when I spoke to my husband about it he was appalled. He believes that it will just become another way that the government would try to gather data and control us. He was worried about insurance companies getting hold of this information and holding it against people and a time in the future where people would need licenses to have children based on the results of their genetic testing. I think he even mention Hitler.
I laughed. I mean, it’s ridiculous, isn’t it? Perhaps not.
After further email conversations with Mummy Mad it turns out that my husband may not be such a paranoid delusional after all. ‘From 2011 there is the possibility of a change in the UK laws regarding insurance and genetic testing. At the moment you do not have to disclose you have been tested or the results, but that may all change when the review takes place in to insurance next year.’ It is unclear whether this change will relate to purely NHS tests taken because of family history or will include all genetic test even if done privately.
But does it matter if it could help prevent your early death?
Would you want to be tested? Would you want your children to be? Would you feel prepared for any potential bad news going through these private channels without pre-counseling? Would insurance rises affect your decision?
What do you think about it all?