I have been waiting for some credible Public source to spell out the cautionary tale of the benefits and dangers of using a consumer genetic testing company. The newer TV program series "Bull" recently did a story on how law enforcement scheming acquired the name of a suspect through the back door of a consumer Genetics testing company. I thought the scheme was apocryphal, but in fact the story was pulled from Headlines and they made it stick. This is not just bad news, the ease law enforcement acquired genetic identity of a person devistates any sense of protection of our most intimate information, making public our genetic identity from a cell, which we shed by the millions daily. As we know, genetic "finger prints" are the tip of the iceberg. Once you give away a pristine sample of your cheek cells, the limits of technology are the only thing between anonymity and knowing everything about diseases and genetic probability of potential issues are going to be used against you. The same wealth of knowledge can be the answer to the questions raised in a genetic assay in the hands of the scientists trying to improve the human condition. Certainly diseases like cancer have answers in well packaged genomic diaries and genetic profiles.
This is deeply personal information, beyond identity of a particular person. Extensive and special analysis for our mutations stayed around $3,000 over time. The number of mutations tested for increased from under a hundred to ~3,000 just like Moore's law, technical advancement doubles every 18 months and the cost halves. I bought the necessary laboratory equipment to do genetic assays fifteen years ago on eBay. It's obsolete now but anybody sufficiently motivated could have a genetic testing laboratory/company. The next generation of equipment that was formerly limited to a urinalysis for drugs and such can now be doing genetic testing for certain errors and mutations.
Perhaps because I understand just how incredibly valuable your Genetics and Genomic diary are in the process of developing an in depth understanding of us, I view consumer genetic testing with a jaundice eye. We CFers are an island population. A rare number of us exist and we will be compromised by the issues of CF with morbidity and mortality involved with most of the issues. On the one hand we are living gold mines of information for scientific research. I see the enthusiasm CFers have over drug trials and I have to bite my tongue. The stakes are high in the trials and this includes the potential to arrest the progress of the disease and I am willing to bet someone has had organ damage to the kidneys and liver. If the right trial comes along I will fighting to get in line.
The gold mine begins at birth for many and the germ bags we are as kids amaze parents and doctors that we survive the head and pulmonary infection. Doctors improvised with my horrible sinuses, deformed and perforated from flesh eating bacteria, something most pathogens do. Advances just from anecdotal evidence are things I've seen my doctors add to treating other patients who may be the unfortunate inheriters of CF.
I have explained to doctors not familiar with CF that many of us are close to being professional patients. We know that the probability of medical records from our other doctors being accessible at the time of an appointment with a new doctor aren't good. This is not the most flattering side of medicine and it is the source of the worst mistakes, but we keep moving forward with our knowledge of what to expect, and not.
My wife helps me out by acquiring CT images and reports, blood tests and such for just such occasions. The days of a doctor keeping ten years or more of medical records are gone for the most part. Keeping the total of my medical records became undoable once my PCP of twenty years retired suddenly back in 2014. Fortunately we keep seminal tests and correspondence between doctors and the tests of every type. Some of it goes back 35 years.
Our medical records compile the progression of an illness. These records are like an extremely detailed personal diary, adding complete genetic assays with an ongoing genomic diary begins to resemble virtual people who are the product of the ministations of medical practices. Now a person has something of tremendous value for the advancement of healthcare and the best treatment.
CysticFibrosis.Com has been working hard to realize a product that is truly valuable for people who have rare genetic diseases and genetically induced conditions. Financially valuable for the patient who has a constant need for medical treatment and the best quality data is going to be beneficial to those who have rare genetic diseases.
I find these consumer genetic testing companies offensive because they prey on the most vulnerable of our lot. The price of the service doesn't cover the cost of testing. In among the gifts for your family members one thing is for sure. If it's FREE (or nearly so), YOU ARE THE PRODUCT. I'm recommending that we support the cause for a service that pays us directly in exchange for the wonderful things that may come.
LL
