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Why scientists need your DNA for research

Progress in gene therapy is rapidly advancing these days, and a significant area of breakthrough and discovery is in the field of genetic disease research. Thanks to the increasing availability of affordable genomic data, provided in part by the millions of people who have used home DNA test kits, researchers have made impressive gains in the rush to cure some of the more than 10,000 genetic diseases.

Specifically, doctors have had success virtually eliminating a teenage boy’s sickle cell anemia, an inherited genetic disease that causes terrible health issues including acute pain, vision problems, and even strokes, and for which there is no cure.

More Breakthroughs in Medical Genetic Therapies

  • In the summer of 2017, the FDA approved two cancer therapies that fight the disease by genetically engineering a patient’s own genes to attack and destroy cancer cells. The success of these and other CAR T-cell immunotherapies currently in development led the American Society of Clinical Oncology to declare the treatment the 2018 Advance of the Year.
  • The first-ever gene therapy drug for an inherited disease gained the FDA’s approval last December and is being used to restore the eyesight of people suffering from a variety of retinal diseases.
  • A seven-year-old boy in severe septic shock due to a severe epidermolysis bullosa, a genetic disorder which causes the skin to blister and tear off, received a life-saving whole body graft of genetically modified stem cells. Two years after the surgery, the boy attends school and even plays soccer in what researchers call a “dramatic recovery.”
  • A handful of people who have a rare form of hemophilia have been declared cured thanks to an experimental gene therapy. And a gene therapy that increases the clotting factor in other types of hemophilia is showing positive results and improving the quality of life for nine patients in early clinical trials.

Your Data Can Help Find Cures

All of these medical breakthroughs, and the countless other gene therapy experiments currently underway, rely on the study and modification of DNA. Unlike many existing treatments that treat the symptoms of genetic diseases like Crohn’s disease and Marfan syndrome, researchers working on gene therapies hope to modify the affected persons’ DNA sequence with the goal of actually curing their genetic disease. To do that, scientists need large amounts of genetic material to conduct their experimental research.

That’s where we, the ones not in the lab coats, come in. The DNA that millions of Americans have had sequenced through companies like 23andMe and AncestryDNA is rich in potential. Researchers need genomic data to study in search of cures for breast cancer, autism, and Parkinson’s disease. By providing your raw genomic data files to researchers, you can quite literally help cure cancer.

How to Safely, Smartly Share Your DNA Data

If you had your DNA sequenced by a company like 23andMe, you had the option upon registering to indicate that you would like to support scientific research by allowing researchers access to your data. That’s a noble move and something that 80% of their customers elect to do. But those DNA test kit companies are not sharing their holdings in the name of altruism. In fact, many sell customers’ genomic data, and they don’t tell them to whom or for what. They also don’t share the money they receive.

At EncrypGen, we believe you alone should own your DNA data, and that you should be the decider on how and why that data is used. We also believe you should receive any payments researchers are offering for genomic material.  It’s your DNA, and it’s not hyperbole to say it could help cure thousands of other genetic diseases. It’s extremely valuable.

That’s why we created the world’s first genomic marketplace. It’s a secure blockchain network where individuals can safely upload their raw DNA data, and, if they choose to, negotiate with buyers directly on the Gene-Chain DNA Data Marketplace for their anonymized data. We believe in the power of DNA research to change the world, heal genetic diseases, and improve all of our lives and the lives of our children. Own your data, control your data, and use it as you choose. We hope you’ll decide to participate in research and maybe even help cure cancer. And if you do, we’ll help you get paid for it.