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How Anne Wojcicki’s 23andMe Will Mine Its Giant DNA Database

141 点作者 woodgrainz将近 6 年前

19 条评论

lokl将近 6 年前
DNA sequences should be viewed differently than other personal data, since they are personal not only for you, but also for your children, grandchildren, siblings, parents, etc. When you make a decision to share this data, you are making a decision for them, too. The implications might not be the same for your great-great-grandchildren, but who can tell whether the impact will be better or worse? How will it be possible to use the information in the future, when technology, science, law, politics, and social customs might be quite different?<p>We often see complaints about big companies selling their users&#x27; personal data, but in this case the decision lies with each individual who shares his DNA sequence. Do you believe it is ethical to share your relatives&#x27; personal data without their consent?
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siculars将近 6 年前
Anyone surprised? For this and other reasons I&#x27;ve refused to use their service and other services like theirs.<p>Here&#x27;s a service. Pay to get your panel&#x2F;exome&#x2F;whole genome sequenced, put your data on gcp&#x2F;aws&#x2F;azure, user open source to do variant analysis and pay a specialist for their computer aided analysis.<p>Guess what, you own your data end to end. I imagine the above could be had for less than $2k. Some startup will write the software stack to do this and simply sell licenses for software you run anywhere you want.
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iandanforth将近 6 年前
I&#x27;m not a huge fan of GSK making money off this data, but I am a huge fan of having the data be available. Did you know you can download all your 23andMe data and make it publicly available through openhumans.org? Here&#x27;s mine:<p><a href="https:&#x2F;&#x2F;www.openhumans.org&#x2F;member&#x2F;iandanforth&#x2F;" rel="nofollow">https:&#x2F;&#x2F;www.openhumans.org&#x2F;member&#x2F;iandanforth&#x2F;</a><p>I want this data out there to help any and all researchers. The more free, public data exists the easier it is for researchers without GSK levels of cash to make discoveries and contribute back to the community. Just like OSS, someone has to be willing to give away something that has historically been sold. I&#x27;m willing to do that and I hope you will as well.
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buboard将近 6 年前
I am for one glad my data is in there. Disease and aging should be our number 1 priority. If your governement and insurance systems are shitty and spy and exclude people, you should fix that instead of putting barriers to science opportunity.
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lymeeducator将近 6 年前
The main priority of these medical and genetic companies is to make money. Safety, ethics and privacy are secondary until they effect the profit. It seems increasingly apparent that public funding and open source efforts are required to advance the science, healing and education of our planet.<p>DNA SNPs are one thing, but genetic expression (phenotype) is immensely complex due to the number of variables. For example, mammalian immune systems are highly redundant across the body and continually signal with cytokines and chemokines to manipulate the immune response that is internally&#x2F;externally environment dependent. Our bodies continually work to remove&#x2F;detox OR sequester pathogens, toxins, metals, etc. This usually results in isolated and&#x2F;or systemic inflammation across the body. Many of the pathogens manifest with overlapping symptoms making it hard to isolate without better diagnostic tools. For example, my two strains of Bartonella cause inflammation in many similar areas that Lyme bacteria do and Babesia has another similar set. It is hard to isolate those symptoms from the mold toxins and metal (aluminum, arsenic, lead) buildup that I also have. Functional doctors believe the HLA SNPs play a role in accumulation rather than removal. Enter saunas&#x2F;sweat tents&#x2F;etc that many cultures used for centuries (lymphatic detox).<p>Enter public funding to invent better and cheaper measuring equipment where each of us owns the data. Privacy protection is also important. We live on a planet with immense biodiversity, albeit shrinking daily due to human activities, where we coexist with bacteria, pathogens, molecules, industrial toxins, etc -- It&#x27;s time we start to learn more about everything ... gathering data in a coherent schema and applying ML can certainly help.<p>That is why there are a number of studies that list various pathogens in brain deposits for Alzheimers, MS, Giant Cell, etc -- Feel free to google and research many of the terms above and reach your own conclusions :-)
ianai将近 6 年前
When will people place a value on their personal data? A video uploaded with a copyrighted song in the background can be challenged by the IP owner and often is. But even with public outrage over things like PI breaches at Equifax, 23andme gets full ownership of peoples’ dna.
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rando444将近 6 年前
<i>&gt;Wojcicki was also building out an in-house drug-research group and tapping into a new revenue source: recruiting thousands of patients from 23andMe’s database for pharmaceutical firms’ clinical trials.</i><p>This is the most responsible way to use the data.<p>The way this model works is that a pharmaceutical companies have a question that requires a genetic database to answer. They then pay 23andMe for the results of these tests.<p>23andMe does not have to give up any customer data to any third party and can at the same time build a solid business model around using their data for positive medical advancements.
draklor40将近 6 年前
Hasn&#x27;t anyone ever watched Gattaca before shipping their DNA sample to a Silicon Valley company ?
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vajaya将近 6 年前
I regret taking their test with 200 bucks now. It used to be novel and years back, the concept of a totalitarian society with surveillance, database, social credit was still very remote
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drilldrive将近 6 年前
Anne Wojcicki, ex-wife of billionaire Sergey Brinand whose sister is CEO of Youtube is at the helm of the most invasive and extensive data set known to man. Don&#x27;t fool yourselves: DNA databases form the bedrock of de-anonymization so crucial to the Surveillance State, containing the non-consentiory grounding of your existence and your lineage. And let us not forget the easiness of collection, for a sample of sputum suffices.
jnordwick将近 6 年前
This is so rude and self-aggrandizing: &quot;Anne Wojcicki is 45 minutes late, something so encoded in her habits as 23andMe’s CEO that employees have stopped complaining about it. They know it’s hardwired. They know it’s hardwired. On a Thursday morning in April, her team is waiting patiently as she swirls into the company’s headquarters&quot;<p>From the opening sentence, I already don&#x27;t like her.
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c3534l将近 6 年前
Why isn&#x27;t this protected medical information?
ryanmarsh将近 6 年前
Some time ago a friend who works at a biotech startup in the DNA sequencing space told me there’s no way 23andMe’s price covers the sequencing cost and that they must be subsidizing the kits so they can sell the mined data later.
highstep将近 6 年前
quick america! fix your health system before the insurance companies know all
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eristalt将近 6 年前
I recently interviewed with a 23andMe employee and specifically asked about the company&#x27;s concerns regarding the public&#x27;s perception of data privacy. The 23andMe employee was <i>absolutely adamant</i> that 23andMe would <i>never</i> sell customer data or allow anyone else access to it for commercial reasons. They said it went totally against company principles and that the company cares deeply about it.<p>And now this. I wonder if that employee was just not very attentive to what was actually going on, or perhaps the company leadership deceived the rest of the company? Or maybe this is just yet another example of a once-noble company inevitably succumbing to the allure of &quot;growth at all costs&quot;.
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unixhero将近 6 年前
You can always fake your name when you submit the DNA. Then this doesn&#x27;t really matter.
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puskavi将近 6 年前
Good luck getting an insurance when they got your DNA
sonnyblarney将近 6 年前
- Business model? &quot;... generating an estimated $475 million in revenue for the company, which has yet to turn a profit.&quot;<p>- Medical legitimacy? “Effectively what you have is a technology that is neither that helpful [nor] that harmful (...) Dr. Jonathan Berg, a clinical geneticist at the University of North Carolina at Chapel Hill.&quot;<p>- PR Signaling? “It was so unacceptable to her as a compassionate human,” says Ashley Dombkowski, (...) “She is undeterred by massive, worthwhile problems.”<p>- Personal Branding? Cue the Jobs-esque clad-in-black shots.<p>- &#x27;Certainty&#x27; in the face of material uncertainty? &quot;By October 2013, 23andMe was in talks with Target and Wojcicki was pushing hard to enter stores before the holidays (...) Emily Drabant Conley, recalls Wojcicki’s certainty when an exec thought it was impossible to meet the time line: “Anne was like, ‘This is a company that was founded on impossible.’” But in the end, impossible won. It would take three more years for 23andMe to get onto Target’s shelves. &quot;<p>... so where have seen seen this before?<p>I&#x27;m glad that Forbes is taking a slightly more skeptical tone this time, at least calling out some of the issues and not taking PR at face value.<p>I actually hope they are successful, though I&#x27;ll never participate due to obvious privacy concerns.
draklor40将近 6 年前
Hasnt anybody ever watched Gattaca ?