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Dennis OConnor

I Tried to Get My DNA Back From 23andMe. Here's What Happened. - 0 views

  • I did want to find out what exactly happens to someone’s DNA when they send it to one of these companies, and more importantly, if getting a sample back from them is possible.
  • DNA testing isn’t an exact science
  • I wanted to understand what was happening with my actual genetic information.
  • ...11 more annotations...
  • I had chosen to “biobank” my sample in case I desired further testing,
  • my DNA has been sold to them if I consented to take part in their research
  • Winston says that when it comes to arbitration, 23andMe goes a bit further than other companies in that there’s a “fee-shifting provision,”
  • basically all of these companies work with pharmaceutical companies in one way or another
  • one of the concerns about 23andMe, as well as other DNA testing services like Ancestry and My Heritage, is that they’re not the ones directly processing your sample.
  • they’re creating a mass database of information that they can now monetize by selling it to pharmaceutical companies
  • “Clearly, their goal is to acquire this information for medical and pharmaceutical purposes.”
  • While they do send aggregated data, there have been cases where individual data has proven to be useful to big companies.
  • if they receive an actual warrant, he doesn’t see how they could refuse
  • While life insurance companies can’t get that data yet, Winston says that they can ask if you’ve taken any such test, which might tell them if you’re predisposed to breast cancer or something like that.
  • their terms of service, also known as their verbal chloroform.
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    "I want it like I never dealt with 23andMe, which, as it turns out, is pretty much impossible - at least for the next decade."
Dennis OConnor

Genome Medical has Partnered with LunaDNA | LunaDNA - 0 views

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    "Our partner, Genome Medical, makes it easy for you to speak with a clinical professional about your DNA information. Interested in DNA testing but don't know where to begin? The experts at Genome Medical can help with that, too. Access your data files directly from your LunaDNA dashboard to support proactive health discussions. Help you better understand your genetic test results or help you determine if testing is right for you Explain your health risks based on your family and personal health history Offer guidance on how you can integrate your results into your health care Assess whether family members should consider genetic testing Within days from scheduling your phone or video appointment, speak with a board-certified genetic counselor who can: Genome Medical's genetic counselors do not analyze raw data from various DNA vendors, such as 23andme and AncestryDNA. However, they can answer any of your specific medical questions and determine if additional genetic testing is right for you and your family. SCHEDULE YOUR SESSIONASK A QUESTION SELF-PAY $99 AS LOW AS $50 With qualified insurance the cost for genetic counseling may be as low as $50 if the consultation is a covered service under your plan. © 2020 LunaPBC. All rights reserved. ABOUT US   LunaDNA was created by the Public Benefit Corporation, LunaPBC™, a team of passionate genomics and technology veterans. 2019 Technology Pioneers World Economic Forum SELF-PAY $99 AS LOW AS $50 With qualified insurance the cost for genetic counseling may be as low as $50 if the consultation is a covered service under your plan. SCHEDULE YOUR SESSIONASK A QUESTION HOW IT WORKSRESOURCES 2020 Most Innovative Companies Fast Company "
Dennis OConnor

EpigeneticsRX - 0 views

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    "Precise. Personalized. Prevention. Express your best DNA - the power to impact genetic expression is in your hands. Epigenetics is the study of how lifestyle & environment influence the expression of your genes." OUR MISSION is to empower and inspire providers and patients in optimizing genetic potential through precise, personalized protocols that positively impact patients' health and future generations.
Dennis OConnor

Upload Raw DNA Data & Your Health Info to Advance Medicine | LunaDNA - 1 views

  • LunaDNA is the first health and DNA discovery platform owned by its community of data contributors.
  • you remain in complete control of your data.
  • people are the most important players in research and deserve to be honored as partners in the process.
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    "The Future of Health Depends on Your Data The first people-powered platform where you share health data, advance science and take part in the value created."
Dennis OConnor

About Arivale: Our Team - 0 views

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    Dr. K's mentor "Lee Hood, MD, PhD, is a pioneer in the systems approach to biology and medicine. His research has focused on molecular immunology, biotechnology, and genomics. Dr. Hood began his career at Caltech, where he and his colleagues developed the DNA gene sequencer and synthesizer and the protein synthesizer and sequencer, which paved the way for mapping the human genome. A pillar in the biotechnology field, Dr. Hood has played a role in founding more than fourteen biotechnology companies, including Amgen, Applied Biosystems, Darwin, and Integrated Diagnostics."
Dennis OConnor

Netflix's Unnatural Selection: Is biohacking ethical? Is gene editing? - Vox - 0 views

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    "Is it ethical to edit your child's DNA - or your own? Does the answer depend on whether you're perfectly healthy or have a condition like vision loss or are dying of a degenerative disease? And does it matter whether you've got a PhD or never set foot in a college classroom?"
Dennis OConnor

Scientists Unlock 47 New Editable Genes After Purchasing CRISPR Expansion Pack - 0 views

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    "BOSTON-Having exhausted the possibilities of the chromosome pairs that came preloaded on the original human genome, researchers at Harvard Medical School's Department of Genetics told reporters Wednesday they had unlocked 47 new editable genes following their purchase of a CRISPR expansion pack. "This add-on has a ton of incredible new genes, and we can't wait to start inserting them into our lab specimens," said Kevin Spiros, a professor of genetics, remarking that there was nothing more fun than having "some fresh strands of recombinant DNA to play around with." "
Dennis OConnor

Invasive Yet Inevitable? Privacy Normalization Trends in Biometric Technology - 0 views

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    Abstract As biometric technology relies on bodily, physical information, it is among the more intrusive technologies in the contemporary consumer market. Consumer products containing biometric technology are becoming more popular and normalized, yet little is known about public perceptions concerning its privacy implications, especially from the perspective of human agency. This study examines how people perceive biometric technologies in different societal contexts and via different agents in control. Our study revealed that, in large part, people's perceptions of biometric technology are context-dependent, based on who retrieves and who benefits from the information and the situation where the data are collected. Participants were much more comfortable with more intrusive biometric technology in airport security than in a grocery store, and if it was employed to improve their health. We conclude by considering the implications of the survey for new threats to personal privacy that arise out of emerging technologies. Keywords biometric, facial recognition, DNA identification, digital privacy, digital data sharing, emerging technology, surveillance technology, contextual integrity, situational privacy
Dennis OConnor

Sharon Terry: Science didn't understand my kids' rare disease until I decided to study ... - 0 views

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    "Meet Sharon Terry, a former college chaplain and stay-at-home mom who took the medical research world by storm when her two young children were diagnosed with a rare disease known as pseudoxanthoma elasticum (PXE). In this knockout talk, Terry explains how she and her husband became citizen scientists, working midnight shifts at the lab to find the gene behind PXE and establishing mandates that require researchers to share biological samples and work together."
Dennis OConnor

Milasen: The drug that went from idea to injection in 10 months - 0 views

  • itting in freezer at Boston Children’s Hospital is a drug you won’t find anywhere else. It’s called milasen, and the 18 g that the hospital custom-ordered nearly 2 years ago should last for decades. That’s because milasen was designed to treat a single patient—a now 8-year-old girl named Mila Makovec. Milasen was built on decades of work on a class of drugs called antisense oligonucleotides. But after Boston Children’s Hospital scientist Timothy Yu diagnosed Mila with a never-before-seen genetic mutation, he took only 10 months to go from idea to injection. It’s a record-shattering sprint in the typical drug-development marathon, and an unprecedented degree of personalization for a chemical drug.
  • While the story of milasen could be seen as a template for other highly personalized drugs—what the field has come to call n-of-1 therapies—it also raises questions: Who should get these treatments? How will they be funded? And how will the US Food and Drug Administration regulate these projects?
  • Mila’s mom, Julia Vitarello, had started a group called Mila’s Miracle Foundation to raise money to develop a gene therapy for her daughter.
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  • Yu was intrigued. He reached out and offered to do whole-genome sequencing on Mila, her parents, and her younger brother.
  • Julia Vitarello, Mila's mother In March, Yu’s team found that a piece of DNA called a retrotransposon—the genetic remnants of viruses scattered throughout all of our genomes—had spontaneously inserted itself in the middle of a noncoding region of Mila’s CLN7 gene.
  • Black told Yu to renegotiate with the FDA. The 3-month safety study in rats, followed by another couple months to report the data, would take too long. After a letter from Vitarello outlining Mila’s decline, the FDA made a concession: Mila could get the drug after just 1 month of testing, so long as the rat studies continued to 3 months to understand any long-term toxicity.
  • Today, Mila continues to get injections of her drug approximately every 2 months. She used to have up to 30 seizures a day, each lasting more than a minute. Now, she only has a few a day, and they don’t last long,
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    "Sitting in freezer at Boston Children's Hospital is a drug you won't find anywhere else. It's called milasen, and the 18 g that the hospital custom-ordered nearly 2 years ago should last for decades. That's because milasen was designed to treat a single patient-a now 8-year-old girl named Mila Makovec. Milasen was built on decades of work on a class of drugs called antisense oligonucleotides. But after Boston Children's Hospital scientist Timothy Yu diagnosed Mila with a never-before-seen genetic mutation, he took only 10 months to go from idea to injection. It's a record-shattering sprint in the typical drug-development marathon, and an unprecedented degree of personalization for a chemical drug."
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