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Thread: Companies are Stealing Genetic/ Genomic Data. Are they Stealing Yours? Take a Survey

  1. #1
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    Companies are Stealing Genetic/ Genomic Data. Are they Stealing Yours? Take a Survey

    Have you sent your DNA to a Genetics Services Company like 23&Me or Anscsestry.Com?
    Companies are stealing Genetic and Genomic data.


    The August 7, 2017 issue of Time Magazine wrote, “The Anti-Antidepressant”, an excellent article on the use of Ketamine for intractable Depression states;

    “A revolution in genetics also offers promise for treating depression. “” After lots of years of really not going anywhere, suddenly there’s a lot to be excited about,”” says Perlis. In a landmark 2016 study, he collaborated with 23&Me and Pfizer Pharmaceuticals to analyze the genetic profiles of nearly 460,000 people. (Now where did they get that?) For the first time they discovered 15 different regions of the human genome associated with the development of depression.” -Time Magazine August 7, 2017.

    About now, if I had my genetics analyzed by 23&Me I would be red faced, screaming WHAT?!!!!!! I would be willing to bet money that less than a dozen of the 23&Me customers know that their genomic data has just been stolen. I say stolen because it is of value, possibly enough value to live on, but it must be protected and packaged for sale over and over again, like software, to interested pharmaceutical companies, Academia and places we haven’t even figured out.

    Imogene (Jeanne) and Dank have weighed in on a Survey that promises to protect our genomic Data as an unintentional benefit to the best solution for the formalization of our genomic diary. I was part of the HGP that closed in 2003. Decoding DNA is technology, albeit very high technology but if we're going to complete the job of defining genes, their functions and effects, we need data such as a genomic diary. Knowing our daily vitals sounds trivial but if you have the basic daily vital signs of a population that can be graphed over time, this is valuable. Dank lists straight forward information about "Why we should take the survey" and Jeanne's link: http://www.cftechnology.org


    Why would somebody be interested in my genetic or genomic data or yours and exactly what is genomic data? The Human Genome Project (HGP) began in 1990 and ended in 2003. At this point it might be more accurate to call it the Human Genetics Project because the initial goal was to determine the sequencing of the DNA held within the chromosomes in the nucleus of a human cell. Eight anonymous people were the first to have their genetic code completely decoded, listed. The DNA of a human, typed as A, G, T, and C's on a standard typewriter, with no spaces would stretch across the United States, and it's completely useless as it stands. Our initial CFTR mutations were discovered in 1989 before the HGP started and it was reverse engineered by understanding the biochemistry of the cell and the proteins making up the chloride ion channel.

    In order to find genes and understand their function, we need more than just DNA. It comes from the personal, medical, and lifestyle information of people who have a genetic disease, or something suspected of being genetic. Dank does an excellent job of outlining the benefits of the Survey and what benefits we can expect to begin with. Medicine has relied on freak accidents, patient with genetic disease, and often people who very likely won't survive an illness very long.

    Antibiotics, for example are always trialed on individuals with no hope of surviving and consent to being a test case. Examples like the famous story of a minor having a tamping bar shot through his head. Surgeons removed the damaged half of the brain expecting him to die, but instead he lived a fairly normal life with the effect of missing half a brain. What was gleaned from this one patient fills volumes of books in neurology and pscyology.

    In order to fill in the genome or the identity of every gene and its function and effects, researchers need people with a known gene mutation, like CF, that are willing to keep a health and lifestyle diary. At some point loading in medical tests at home and at the doctor, will make a sort of profile on your genomics the phenotype or capturing the issues of nurture and nature. If one of the 8 people who had their chromosomes sequenced for the HGP, was a newborn and a genomic diary was kept, it might contain the results of any medical tests, genetic testing and maybe diet and vitals.

    Another application of this Personal Genomics beyond what Dank outlines is the potential of having all of your medical records on your cell phone, highly encrypted, but I have to believe that having our medical records, a genomic diary that can be graphed for say calorie intake vs FEV1 or weight is going to be incredibly valuable to us personally. I have lost track of the number of times medical information is forwarded from one doctor to another only to find, they never got it, lost it or threw it away because they didn't know why it came in. Every medical appointment, I have a file of medical records information that they should have gotten since my last visit. To be able to go over precision medical information with a doctor will result in better treatment and a longer and healthier life.

    Completing the HGP in the real sense won't remove every medical mystery but pharmaceutical companies will be able to make a perfect, tailored chemotherapy or give a vaccination against ever getting a given type of cancer. Genetics is behind everything to some degree, even a car wreck. To me this is a marriage made in heaven. Jeanne has been keeping the lights on and the site up and working. A small portion of the project will be to fund and perpetuate CysticFibrosis.com. The scientific world will pay us back in cash for our genomic diary, and use the information to make better drugs and treatments for disease.

    Do this PLEASE!

    http://www.cftechnology.org

    LL
    Last edited by LittleLab4CF; 11-14-2017 at 10:52 AM.
    66 yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism appears to be virulent.

  2. #2
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    Hi LittleLab4CF! Leave it to you...a geneticist....to tell it "like it is"~ I think many will read this and wonder about their own data....who owns my data? Certainly, any member living into his 60's with CF has VERY VALUABLE DATA! So many of our caregivers and young patients look to you with admiration and lots of questions...how did you do it? That is what the app is all about collecting and noticing!

    Salt and Light,

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