Mine!: How the Hidden Rules of Ownership Control Our Lives
by Michael A. Heller and James Salzman · 2 Mar 2021 · 332pp · 100,245 words
a dozen saliva samples as part of her story-writing research. For an article on her ethnic heritage, she mailed spit to Ancestry.com and 23andMe; for insight into her athletic ability, diet, and sleep patterns, she sent a sample to Helix; for a genetically tailored beauty regime, she uploaded her
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DNA, the commercial value of gene databases grows exponentially. Medical data licensing has become a multibillion-dollar business. GlaxoSmithKline paid 23andMe $300 million to access data for targeted drug development. 23andMe went one step further, developing an anti-inflammatory drug based on its data. The company already has over 9 million individual
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sports plays. Perhaps a no-ownership world creates more value than the rules that lawmakers would likely impose. But who benefits from this value? For 23andMe and its industry cohort, no-ownership would be fine: the companies do not need law to reward their labor. Nor do they rely on shaming
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charge for the information. As databases scale up, they can become exponentially more valuable. The key is to grow the database fast. This is why 23andMe decodes your heritage for just $99: your genetic information is raw material for the real product, its database. To preserve the Wild West regime, the
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industry has been working to fend off ownership regulation. In a savvy move, companies like 23andMe decided not to fight Brown and others like her. Gene companies have learned the lessons of Napster and music streaming, of HBO and password sharing
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secrecy is hard to pierce; and social media tweets don’t inflict much shame. One industry strategy is to foster the illusion of individual ownership. 23andMe realized it was better off disclaiming ownership in Brown’s data. The company did not want to provoke Brown to feel her self-ownership was
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they swab and swipe. When Brown tried to retrieve the spit samples she had mailed in, the companies readily agreed…in principle. In practice, though, 23andMe told Brown the procedures needed to delete physical samples were “not currently available.” And Ancestry.com told her no one had ever asked to have
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’s mine because it’s attached to something mine (see Chapter 4). If you want data deleted, fine—in principle. In practice, though, Brown reports, “23andMe may tell you that you can delete your data, but in reality, the law says you can’t.” Scrubbing data is impossible in part because
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lot. More than 80 percent of Ancestry.com customers check the box, letting the company sell or share their data. According to 23andMe, “The average customer who chooses to let 23andMe share their data for research contributes to more than 230 studies on topics including asthma, lupus, and Parkinson’s disease.” And
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are substantially absent from these databases—and by extension, from medical research and discoveries that might benefit them. If the baseline ownership rule were that 23andMe paid people for data, instead of the reverse, perhaps we would see more diverse contributors and more inclusive drug development. But if our goal is
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one of these start-ups. Twenty days of data from a fitness tracker is worth two of Barry’s shares, valued at 14 cents; a 23andMe–style test earns you $3.50 in shares; your whole genome nets you $21. People cash in if the start-up shares do well—thus
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reversing the cash flow from the 23andMe model. But the stock ownership model has downsides, too. It’s meaningfully available only to the handful of sophisticated consumers who search it out, prefer
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stock to cheap testing, and deliberately opt in to this ownership relationship. Most people keep on mailing in 23andMe and Ancestry.com kits, clicking “I consent,” and getting no direct compensation (though there may be some indirect compensation if it costs companies more to
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such that everyone who contributes genetic data—not just the savviest—owns a small share in medical discoveries derived from their genetic data. Companies like 23andMe could still offer cash today in exchange for a future ownership share, but the opt-out transaction would have to be deliberate and transparent, not
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tweaking ownership to steer us this way or that—whether it’s to ensure rabid fans for Duke basketball, scoop up our genetic code for 23andMe, or encourage safer and more sustainable crabbing on the Bering Sea. Remember the Knee Defender story that opened this book? In the time it took
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June 5, 2020. These terms change without notice—and that’s part of our point. “The average customer who”: Erin Brodwin, “DNA-testing Companies Like 23andMe Sell Your Genetic Data to Drugmakers and Other Silicon Valley Startups,” Business Insider, August 3, 2018. “You can’t go to them later”: Molly Wood
She Has Her Mother's Laugh
by Carl Zimmer · 29 May 2018
Kunta Kinte in the original version, now served as an executive producer. To promote the new version of Roots, Burton took a DNA test from 23andMe, along with Malachi Kirby, the actor playing Kinte in the remake. “I’ve always felt there was a piece of me missing,” Burton said in
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a lot more complicated than I had expected. I could not simply spit into a tube and mail it off to a company like 23andMe. In 2007, 23andMe began providing reports on DNA directly to consumers. For $999, they would identify the variants at half a million sites in a person’s
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a profound leap from conventional genetic tests. They had to be approved by the FDA and ordered by doctors. Now 23andMe was delivering information straight to customers. In 2013, the FDA told 23andMe to stop selling unvalidated tests or face the consequences. In response, the company cut back their reports to ancestry
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evidence for Neanderthal interbreeding, genetic genealogy was a thriving industry. It was ready to seize such a sensational finding and make the most of it. 23andMe quickly put together a test that they claimed could tell customers just how much of their genome was Neanderthal. When I told people about my
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eagerly let me know about their percentage. The more Neanderthal DNA they carried, the happier they sounded. Judging from comments that customers have left on 23andMe’s website, Neanderthal pride is a common thing. “I am very proud of my 2.8% Neanderthal DNA,” someone named Gayle wrote in 2011. “Neanderthals
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were happy to see all the enthusiasm over their research, but they also didn’t like the pretzels into which it was getting stretched. The 23andMe test, for example, was based only on the 2010 rough draft of the Neanderthal genome. Only later did Pääbo and his colleagues discover that a
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or minus only 0.08 percent. When the Neanderthal researchers published their analysis, they went out of their way to take a swipe at the 23andMe test. For the most part, the researchers said, the test only delivered “statistical noise.” Even if some people actually did have twice as much Neanderthal
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genomes for several years at Cold Spring Harbor. He was intrigued by the request, admitting that he had never been a big fan of the 23andMe Neanderthal test. “They just give you a number,” he said. “They don’t tell you where you’re Neanderthal.” I arranged for Siepel to get
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Deficiency.” National Bureau of Economic Research Working Paper Series, working paper 19233. http://www.nber.org/papers/w19233. “Find Your Inner Neanderthal.” 2011. 23andMe blog, December 15. https://blog.23andme.com/ancestry/find-your-inner-neanderthal/ (accessed July 25, 2017). Finger, Stanley, and Shawn E. Christ. 2004. “Pearl S. Buck and Phenylketonuria
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27: R1177-R1192. Rogers, Lois. 1998. “Baby Created from Two Mothers Raises Hopes for Childless.” Sunday Times, June 14. “Roots Revisited.” 2016. 23andMe blog, May 30. https://blog.23andme.com/ancestry/roots-revisited/ (accessed August 3, 2017). Rose, Steven. 1972. “Environmental Effects on Brain and Behaviour.” In Race, Culture and Intelligence. Edited
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, 360–65 Tsuji, Frederick, 406 Tucker, William, 299 tumors, 274, 353–54, 392–400, 472. See also cancers Turkheimer, Eric, 310–11 Turnbull, Doug, 517 23andMe, 180, 182, 240–42 twins and chimerism, 380–82, 384 and CRISPR research, 497 and effects of meiosis on heredity, 151–52 and ethical issues
The Patient Will See You Now: The Future of Medicine Is in Your Hands
by Eric Topol · 6 Jan 2015 · 588pp · 131,025 words
JEFFERSON “It used to be that patients learned about their health only from their doctor. Thanks to mobile health gadgets, apps and services such as 23andMe’s, that is changing.” —The Economist2 Angelina Jolie was used to leading big screen, big action roles, from swashbuckling archaeologist Lara Croft to being
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us. She did something to prevent disease, and that’s exactly what we want people thinking about.”33 We’re going to drill down on 23andMe, whose mission is to democratize genetic information. This was the first direct-to-consumer genomics company; it was founded in 2006 and launched in November
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million from Google, Johnson & Johnson, the Russian billionaire Yuri Milner, and several venture capital firms. In November 2013, the FDA sent a stern letter to 23andMe, which included the following: As part of our interactions with you, including more than 14 face-to-face and teleconference meetings, hundreds of e-mail
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an increasing list of indications, show that you plan to expand the PGS’s uses and consumer base without obtaining marketing authorization from FDA. Therefore, 23andMe must immediately discontinue marketing the PGS until such time as it receives FDA marketing authorization for the device. . . . Failure to take adequate corrective action
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FDA notification was intense, not as extensive or global as the Jolie disclosure, but highly charged and polarized.2,35–77* Some felt that 23andMe was reckless and arrogant and had overstepped their bounds, while others felt this endangered the democratization of health information. Or as a cofounder of
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on his or her own to interpret such complicated and highly nuanced data,” and that a health care professional should ideally be involved.63 However, 23andMe’s website says, “You should not assume that any information we may be able to provide to you, whether now or as genetic research advances
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highway stripes provide information, they don’t drive the car. The FDA is demanding sole right to steer the car. Beyond paternalism, the FDA-vs.-23andMe flap brings out another critical and unresolved matter—validity of the genomic results. Validity can be divided into two categories—technical and clinical. As far
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as technical, the genotyping for 23andMe is done by state-of-the-art equipment in a clinical laboratory known as the National Genetics Institute, a wholly owned subsidiary of LabCorp. In
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a replication experiment of 23andMe data performed in 2010, of six hundred thousand genotypes there were only eighty-five that were errors—that is a rate of 0.01 percent
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as any academic genomics research laboratory. So the question about the accuracy of the genotyping is pretty easy to put aside. Further, in February 2013, 23andMe scientists published, in a well-regarded, peer-reviewed, open-access journal, PeerJ, their results of the individuals who had tested positive for their BRCA tests
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to the three mutations prevalent in Ashkenazi Jews.80 There are hundreds of mutations in the BRCA1|2 genes that may be associated with cancer—23andMe only tests for a few of the common ones via what is known as array genotyping, not sequencing. The array method assesses particular bases
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the Illumina OmniExpress Plus biochip, which is the same as is used by academic researchers around the world.68 Of 114,627 customers in the 23andMe database at the time, 204 (130 males and 74 females) tested positive for one of the three BRCA mutations. Of those who were Ashkenazi
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through their saliva genotyping. They handled this information quite well, without undue anxiety, sharing it with relatives and identifying additional carriers. Furthermore, controls (from the 23andMe database) of 31 Ashkenazi Jews matched for age and sex, but who were not BRCA mutation carriers, did not forego cancer screening, acknowledging that the
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23andMe testing is quite limited. Only 1 of the 63 participants reported a negative impact and said, “I would not do it again.”44 But the
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clinical validity of 23andMe’s reports is quite a different matter. Each customer gets hundreds of thousands of DNA sequence variants assessed for over 250 medical conditions and traits
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type of earwax or whether you are likely to sneeze when you look directly at the sun (this gene variant was discovered and reported by 23andMe from review of their database). But most are for common diseases like heart attack, diabetes, and various cancers, or for DNA interactions with medications.
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Richard Epstein, the noted law professor at New York University, has pointed out, “The FDA should have to show by clear and convincing evidence that 23andMe leads to dangerous results that the FDA claims by surveying customers of the firm.”68,81 Thus far, with over seven hundred thousand customers, there
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Our group at Scripps published a New England Journal of Medicine study of over three thousand individuals who had a similar consumer genomics assessment to 23andMe’s and found no evidence of psychological harm or sustained anxiety.83 One in 4 participants decided to share their genomic information with their doctor
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. More recently, Eric Green and colleagues at Harvard studied 1,057 consumers who had a 23andMe test or one from another company. This study confirmed both any lack of adverse effects and the proportion of individuals who shared their data with
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physician.84 But absence from harm is a far cry from benefit. Some have therefore called this “recreational genetics.” I like to think of 23andMe as a starter kit of genomic data, as it is just the beginning of how we will understand human DNA sequence data in the future
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a clinical laboratory. It’s just the beginning of where consumer genomics can and will get to over time when our knowledge base is enhanced. 23andMe was initially positioned as providing genomics education and research for consumers when it was commercially launched in 2007. But in August 2013, having put two
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showed individuals next to a graph of their genomic profile saying things like, “I might have an increased risk of heart disease.”62,85 That 23andMe was “going medical” was also evident in their campaign “Know more about your health!,” including new website content with such anecdotes of people getting
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an unexpected diagnosis that “changed their lives forever.” Further, 23andMe started selling their saliva kits and Personal Genome Service via Amazon for the first time. The marketing was not well received by the FDA. The
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campaign. Ironically, the cover and feature article of the November 2013 issue (which was published in October, well in advance of the FDA letter to 23andMe) of Fast Company called out Anne Wojcicki as “The Most Daring CEO in America” and asked, “Why Are Doctors, Insurers and Privacy Wonks Having
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a Heart Attack?”33 It should have included the FDA! In response to the FDA’s shutdown of 23andMe’s marketing, there were two public efforts of online petitions, TechFreedom at change.org and We the People at whitehouse.gov, asking the Obama administration
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The other was not, when the “We the People” petition included the following: “we demand that we maintain access to genomics testing services like 23andMe,” and “the price of over-regulation is lengthy delays in potentially life-saving medical innovations.”38 The latter claim is clearly off base, since
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Wall Street Journal had a strong response, titled “The FDA and Thee,” crying foul, that the FDA had overstepped its bounds: “The agency is declaring 23andMe’s service an ‘adulterated’ product under the Federal Food, Drug and Cosmetic Act of 1938, in one more case of twentieth-century law undermining medical
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’s insistence that the information pass through a doctor or genetic counselor first. The final indication that the FDA was preparing for the takedown on 23andMe came just two days prior, on November 20, 2013, when the FDA announced its approval of the first DNA sequencing technology, the so-called
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doctor. With the right information and support, patients will be able to participate alongside their doctors in making more informed decisions.” Despite these actions against 23andMe and others, there are many glaring inconsistencies in how the FDA treats consumer genomics. Myriad Genetics, for example, has never had FDA approval or clearance
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allowed on the market before it has been approved.94,95 As Michael Eisen, a University of California, Berkeley, geneticist, who is an advisor to 23andMe, nicely summarized, “Genetic tests are simply not—at least not yet—medical devices in any meaningful sense of the word. They are closer to family
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history than to an accurate diagnostic.”96 While 23andMe agreed to stop selling its PGS, it still will provide the raw genomic data to consumers, and there are free software tools that can
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of time before such genomic information is free-flowing to the public. OK, maybe not free, but certainly flowing. Big Consumer Genomic Data Before leaving 23andMe, there is one other big thing to note—its ambitious strategy to build a database with the DNA data from twenty-five million customers and
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pharmaceutical firms and marketers might know more about your body than you know yourself.”98 This is not true. When you become a customer of 23andMe, you are asked to opt in to their research and 90 percent of people do that—with the assurance that you will be kept
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a drug company. Addressing both concerns is critical, because the promise of massive medicine information resources is so great. This issue is much bigger than 23andMe, and I will discuss it fully in two dedicated chapters later in the book. The Supreme Court and Genomic Medicine The BRCA genes that were
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15 and for Tay-Sachs 1 in 27.5 Prospective parents can be readily screened for important carrier conditions via a variety of commercial tests; 23andMe screens for fifty conditions; Counsyl tests for over one hundred. Both these companies use array chips that only pick up the mutations that have been
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Not only would data come from physicians but also it would be pouring in from patients themselves, from direct-to-consumer testing companies (such as 23andMe), patient advocate foundations, online health communities (such as PatientsLikeMe), and the large number of clinical trials that are perpetually being conducted without taking full advantage
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public talk about genomics, the first question that I invariably get is related to the privacy issue. Currently the largest genomic data set resides at 23andMe. The company’s mission is to create “the world’s large, secure, private database of genotypic and phenotypic information that can be used for
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1. A. Jolie, “My Medical Choice,” New York Times, May 14, 2013, http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html. 2. “23andMe and the FDA: A Regulator Brings a Genetic Company to a Halt,” The Economist, November 30, 2013, http://www.economist.com/news/business/21590941-regulator
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http://www.nytimes.com/2013/11/27/health/in-israel-a-push-to-screen-for-cancer-gene-leaves-many-conflicted.html. 33. E. Murphy, “Inside 23andMe Founder Anne Wojcicki’s $99 DNA Revolution,” Fast Company, October 14, 2013: http://www.fastcompany.com/3018598/for-99-this-ceo-can-tell-you-what
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-might-kill-you-inside-23andme-founder-anne-wojcickis-dna-r. 34. FDA, “Inspections, Compliance, Enforcement, and Criminal Investigations: Warning Letter to Ann Wojcicki,” November 22, 2013, http://www.fda.
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’t Mean Anything in the Long Run,” Slate, November 25, 2013, http://www.slate.com/blogs/future_tense/2013/11/25/fda_letter_to_23andme_won_t_mean_anything_in_the_long_run.html. 41. R. Khan and D. Mittelman, “Rumors of the Death of Consumer Genomics Are Greatly Exaggerated
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Just a Bump in the Road, One Genetics-Testing Investor Says,” Wall Street Journal, December 16, 2013, http://blogs.wsj.com/venturecapital/2013/12/16/23andme-flap-with-fda-just-a-bump-in-the-road-one-genetics-testing-investor-says/tab/print/. 45. H. Greely, “The FDA Drops an Anvil
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. 51. J. K. Wagner, “The Sky Is Falling for Personal Genomics! Oh, Nevermind. It’s Just a Cease & Desist Letter from the FDA to 23andMe,” Genomics Law Report, December 3, 2013, http://www.genomicslawreport.com/index.php/2013/12/03/the-sky-is-falling-for-personal-genomics-oh-nevermind-its
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-just-a-cease-desist-letter-from-the-fda-to-23andme/. 52. “Doing the Genomic Revolution Right,” Huffington Post, December 20, 2013, http://www.huffingtonpost.com/tricia-page/doing-the-genomic-revolution-right_b_4480887.
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truth/. 70. M. Allison, “Direct-to-Consumer Genomics Reinvents Itself,” Nature Biotechnology 30, no. 11 (2012): 1027–1029. 71. G. J. Annas and S. Elias, “23andMe and the FDA,” New England Journal of Medicine 370 (2014): 985–988. 72. M. White, “The FDA is Not Anti-Genetics,” Pacific Standard, January 17
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G. Marchant, “The FDA Could Set Personal Genetics Rights Back Decades,” Slate, November 26, 2013, http://www.slate.com/articles/technology/future_tense/2013/11/_23andme_fda_letter_premarket_approval_requirement_could_kill_at_home_genetic.html. 80. U. Francke et al., “Dealing with the Unexpected: Consumer Responses to Direct-Access
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2011): 524–534. 84. R. C. Green and N. A. Farahany, “The FDA Is Overcautious on Consumer Genomics,” Nature 505 (2014): 2. 85. R. Leuty, “23andMe’s Andy Page Gets Disruptive with the Masses,” San Francisco Business Times, October 22, 2013, http://www.bizjournals.com/sanfrancisco/blog/biotech/2013/10
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Neuron Culture, December 2, 2013, http://daviddobbs.net/smoothpebbles/is-the-national-cancer-institute-telling-me-to-remove-my-breasts/. 96. M. Eisen, “FDA vs. 23andMe: How Do We Want Genetic Testing to Be Regulated?,” it is NOT junk, November 26, 2013, http://www.michaeleisen.org/blog/?p=1480. 97. “The
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/article/report-healthcare-cybersecurity-legislation-not-enough. 90. L. Miller, “The Google of Spit,” New York Magazine, April 22, 2014, http://nymag.com/news/features/23andme-2014-4/. 91. Y. Erlich and A. Narayanan, “Routes for Breaching and Protecting Genetic Privacy,” Nature Reviews Genetics 15 (2014): 409–421. 92. K.
Hello World: Being Human in the Age of Algorithms
by Hannah Fry · 17 Sep 2018 · 296pp · 78,631 words
current trend for genetic testing. For the bargain price of £149, you can send off a saliva sample to the genomics and biotechnology company 23andMe in exchange for a report of your genetic traits, including answers to questions such as: What kind of earwax do you have? Do you have
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its potential to advance our understanding of the human genome. Academics, pharmaceutical companies and non-profits around the world are queuing up to partner with 23andMe to hunt for patterns in their data – both with and without the help of algorithms – in the hope of answering big questions that affect all
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treat Parkinson’s? The dataset is also valuable in a much more literal sense. Although the research being done offers an immense benefit to society, 23andMe isn’t doing this out of the goodness of its heart. If you give it your consent (and 80 per cent of customers do), it
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research partners for a tidy profit.56 The money earned isn’t a happy bonus for the company; it’s actually their business plan. One 23andMe board member told Fast Company: ‘The long game here is not to make money selling kits, although the kits are essential to get the base
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getting a genetic test any time soon. And yet (thankfully for society) millions of people are voluntarily giving up their data. At the last count 23andMe has more than 2 million genotyped customers,62 while MyHeritage, Ancestry.com – even the National Geographic Genographic project – have millions more. So perhaps this is
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Anthropological Institute of Great Britain and Ireland, vol. 14, 1885, pp. 205–21. 53. ‘Taste’, https://permalinks.23andme.com/pdf/samplereport_traits.pdf. 54. ‘Sneezing on summer solstice?’, 23andMeBlog, 20 June 2012, https://blog.23andme.com/health-traits/sneezing-on-summer-solstice/. 55. ‘Find out what your DNA says about your health
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, traits and ancestry’, 23andMe, https://www.23andme.com/en-gb/dna-health-ancestry/. 56. Kristen v. Brown, ‘23andMe is selling your data but not how you think
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’, Gizmodo, 14 April 2017, https://gizmodo.com/23andme-is-selling-your-data-but-not-how-you-think-1794340474. 57
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. Michael Grothaus, ‘How23andMe is monetizing your DNA’, Fast Company, 15 Jan. 2015, https://www.fastcompany.com/3040356/what-23andme-is-doing-with-all-that-dna. 58. Rob Stein, ‘Found on the Web, with DNA: a boy’s father’, Washington Post, 13 Nov. 2005, http
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.nlm.nih.gov/pubmed/23329047. 61. Currently, genetic tests for Huntington’s disease are not available from any commercial DNA testing kits. 62. Matthew Herper, ‘23andMe rides again: FDA clears genetic tests to predict disease risk’, Forbes, 6 April 2017, https://www.forbes.com/sites/matthewherper/2017/04/06
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/23andme-rides-again-fda-clears-genetic-tests-to-predict-disease-risk/#302aea624fdc. Cars 1. DARPA, Grand Challenge 2004: Final Report (Arlington, VA: Defence Advanced Research Projects
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to locate particular terms in the text. Endnotes in the index are denoted by an ‘n’ after the page number e.g. ‘ambiguous images 211n13’ 23andMe 108–9 profit 109 promises of anonymity 109 sale of data 109 volume of customers 110 52Metro 177 abnormalities 84, 87, 95 acute kidney injuries
The Industries of the Future
by Alec Ross · 2 Feb 2016 · 364pp · 99,897 words
anxiety or anxiety out of proportion to the risk.” Vogelstein and Diaz’s concerns were brought to the surface recently by the genomic testing company 23andMe. Founded by Anne Wojcicki at age 32 in 2006, the company provides ancestry-related genetic reports and uninterpreted raw genetic data for its clients. You
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spit in a tube, send it to 23andMe’s lab, and for $99 they send you back your genetic information. It’s not a full sequencing of your genome, but a snapshot of
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researchers know the most about, like genes that indicate a risk for Parkinson’s or how a person might react to certain blood thinners. Wojcicki, 23andMe’s CEO, also happens to be Silicon Valley royalty: she married Google cofounder Sergey Brin; her father chaired the Stanford physics department; and her mother
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at Palo Alto High who rented out the family’s garage to graduate students Brin and Larry Page to incubate Google. It was through a 23andMe test that Brin learned he had a genetic mutation that increased his risk of getting Parkinson’s to somewhere between 30 and 75 percent, compared
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then, he drinks green tea and exercises a lot, two activities linked with reducing the risk of Parkinson’s. But while it worked for Brin, 23andMe’s version of sequencing is a much simpler version of what Lukas Wartman underwent. Wartman had both his cancer and his full genome sequenced. The
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difference here is important. Whereas the full sequencing of a tumor is intensive and extensive, and even more so to have an entire genome sequenced, 23andMe is neither. It’s a much smaller analysis of some genes that have been linked to common diseases. Wojcicki’s
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23andMe is just one company offering do-it-yourself genomic tests, but all of them have faced criticism, specifically around their wildly variable genetic feedback. One
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the potential to cause both false worry and false reassurance. This problem hasn’t been lost on the FDA. In late 2013, it demanded that 23andMe stop marketing its product as “health-related genetic tests” because the company didn’t have regulatory approval to make those claims. The FDA’s public
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letter to 23andMe said the FDA was “concerned about the public health consequences of inaccurate results.” Since the FDA came down on them, Wojcicki and her company have
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comprehensive product offering. At this time we do not know which health reports might be available or when they might be available.” Though Diaz dismisses 23andMe as “a gimmick” due to its limitations, the company has developed a valuable asset in the form of the genetic material from its 900,000
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pivoted its business model in a way that may ultimately produce both commercial and scientific victories. Through a partnership with the Michael J. Fox Foundation, 23andMe built what they called the Parkinson’s Research Community with genetic material from more than 12,000 Parkinson’s patients. This quantity of data is
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valuable to pharmaceutical companies developing precision medications and led to a $60 million deal for 23andMe with Genentech. As people continue to pay $99 to 23andMe for ancestor information, they will be building a database that 23andMe can commercialize for drugmakers. Another set of concerns about the rise of medicines rooted in
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://www.nytimes.com/2007/05/29/technology/29google.html. the company provides ancestry-related: “How It Works,” 23andMe, https://www.23andme.com/howitworks/. It’s not a full sequencing: “About the 23andMe Personal Genome Service,” 23andMe, https://customercare.23andme.com/entries/22591668. Since then, he drinks green tea: Elizabeth Murphy, “Do You Want to Know
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What Will Kill You?” Salon, October 25, 2013, http://www.salon.com/2013/10/25/inside_23andme_founder_anne_wojcickis_99_dna_revolution_newscred/. all of them have faced: Kira Peikoff, “I Had My DNA Picture Taken, with Varying Results,” New York
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.com/2013/12/31/science/i-had-my-dna-picture-taken-with-varying-results.html?src=recg. In late 2013, it demanded: Chris O’Brien, “23andMe Suspends Health-Related Genetic Tests after FDA Warning,” Los Angeles Times, December 6, 2013, http://articles.latimes.com/2013/dec/06/business/la-fi-tn
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-23andme-suspends-tests-fda-20131205. The FDA’s public letter: “23andMe, Inc. 11/22/13,” FDA: Inspections, Compliance, Enforcement, and Criminal Investigation Warning Letters, November 22, 2013, http://www.fda.gov
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/iceci/enforcementactions/warningletters/2013/ucm376296.htm; Scott Hensley, “23andMe Bows to FDA’s Demands, Drops Health Claims,” National Public Radio, December 6, 2013, http://www.npr.org/blogs/health/2013/12/06/249231236
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/23andme-bows-to-fdas-demands-drops-health-claims. Now their tests promise only: Ibid. At this time we do not: “How It Works.” Through a partnership: “
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Michael J. Fox, Our Big-Time Hero,” 23andMe, April 27, 2012, http://blog.23andme.com/news/inside-23andme/michael-j-fox-our-big-time-hero/; Matthew Herper, “Surprise! With $60 Million Genentech Deal, 23andMe Has a Business Plan,” Forbes, January 6, 2015, http://www.forbes.com/sites/matthewherper
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/2015/01/06/surprise-with-60-million-genentech-deal-23andme-has-a-business-plan/. Its signature product, Genophen, sequences: “Our Model,” Genophen: How It Works, http://www.genophen.com/consumers/how-it-works/our-model;
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, 118 Goldberg, Ken, 27, 33, 35 Goldman Sachs, 113 Goldsmith, Stephen, 197 Goloskokov, Konstantin, 141 Goma, Congo, 83–85, 89 Good2Go, 176, 180–81 Google: 23andMe and, 57–58 acquisitions, 25 Berman, Dror and, 191–92 Car Project, 28–31, 134 China and, 219 coded markets and, 94 cryptocurrencies and, 118
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War and, 145 coded money and, 88–97 future of coded trust, 117–20 innovation and, 248 technology and, 74, 98–99 Turkle, Sherry, 18 23andMe, 57–59 Twitter, 78–80, 126–27, 201, 218 Tyle, Sheel, 85, 241–44, 246 Tyle, Sujay, 241–42, 246 Uber, 30–31, 92–96
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, 119 Wells Fargo, 168 Wells, H. G., 1, 196 West Bank, 81–82 WhatsApp, 212–13 Wieseltier, Leon, 181 Wojcicki, Anne, 57–58. See also 23andMe Women’s Digital League, 201–2 women’s equality, 227–28 World Bank, 71, 112, 219, 226, 237 World Economic Forum, 178, 229–30 World
Reset
by Ronald J. Deibert · 14 Aug 2020
, because of their own actions, is constantly encountering their children? A rash of unintended consequences surrounds DNA data, such as that collected by companies like 23andMe and Ancestry.com — a market that is exploding in popularity as genetic testing technology advances and curious customers want to know more about their lineage
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, genetic testing services such as these have higher- and lower-level functions, including selling data they collect on their customers to third parties. For example, 23andMe and Airbnb have partnered to offer customers “heritage vacations” based on their genetic results.64 Large pharmaceutical companies could use genetic data to target users
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genetic markers with tailored advertisements for their drugs. That’s no doubt why, in 2018, the pharmaceutical giant GlaxoSmithKline acquired a $300 million stake in 23andMe.65 Another obvious potential third-party client is law enforcement agencies, which can use genetic information to locate perpetrators of crimes (however those may be
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of digital safety for children and young people in developing nations. Berkman Center Research Publication, (2010-7), 10-36. 23andMe and Airbnb have partnered: Valle, G. D. (2019, May 22). Airbnb is partnering with 23andMe to send people on “heritage” vacations. Retrieved from https://www.vox.com/2019/5/22/18635829/airbnb
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-23andme-heritage-vacations-partnership GlaxoSmithKline acquired: Brodwin, E. (2018, July 25). DNA-testing company 23andMe has signed a $300 million deal with a drug giant. Here’s how to delete your data if that freaks you
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out. Retrieved from https://www.businessinsider.com/dna-testing-delete-your-data-23andme-ancestry-2018-7 Those who share their genetic fingerprints: Resnick, B. (2018, October 15). How your third cousin’s Ancestry DNA test could jeopardize your
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social media use, 110–111, 269, 303 Trump, Donald, Jr., 88 Trump, Melania, 110 tsmc Co., 227 Tubaigy, Salah Muhammed, 137 Turkmenistan, 150–151, 192 23andMe, 71–72 Twitter, 2, 28, 48, 107, 111 activism on, 138, 139, 142, 156–157 data retrieval from, 183, 189–190 false information on, 84
Super Founders: What Data Reveals About Billion-Dollar Startups
by Ali Tamaseb · 14 Sep 2021 · 251pp · 80,831 words
sizable number of billion-dollar startup founders worked in venture capital rather than in corporations. Anne Wojcicki, the founder of the consumer genetics-testing company 23andMe, worked as an analyst for Passport Capital. Katrina Lake was an associate at Leader Ventures before starting Stitch Fix, a clothing retailer. David Vélez was
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neither of the cases increased the likelihood of becoming a billion-dollar company. For some billion-dollar startups, creating the market offers clear advantages. Take 23andMe. Before the consumer genetic-testing company was launched, most people would raise their eyebrows at the invitation to mail a tube of their saliva to
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predisposition to certain ailments. In other words, there was no market for consumer genetic testing. The founders of 23andMe—Anne Wojcicki, Linda Avey, and Paul Cusenza—had to create one. The company 23andMe was one of the first to offer autosomal genetics testing for ancestry applications using saliva, and it took years
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for sales to ramp up beyond the early adopters. Initially, the tests were expensive—23andMe charged $999 for each test back in 2008. Only a very small population of affluent individuals could afford the tests, so the founders of
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23andMe threw “spit parties” at high-end gatherings, like the World Economic Forum in Davos, Switzerland, in an attempt to win influential customers. As the volumes
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make cheaper computers opened up personal computing and gave birth to companies like Microsoft, the reduction in costs of DNA sequencing made possible companies like 23andMe. Now, over ten million people have taken the test—and plenty of other consumer genetics companies have sprung up as competitors. Consumer demand and market
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size are not factors to be taken for granted, however, especially when a new market and a new demand type are being created. While 23andMe had a strong growth rate for years, the company was struggling with direct-to-consumer demand growth at the time of writing this book, as
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the early adopters of the technology dried up. Time will tell whether 23andMe will be able to use its wealth of clinical data and partnerships with pharmaceutical companies to create a generational company, or whether it will lose
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very few companies pursued both simultaneously at the time of founding, and they are the exception. Some, like 23andMe, started selling to consumers but later built partnerships with other corporations (pharmaceutical companies in 23andMe’s case), pursuing a B2B channel as well. In my dataset, I placed the companies that sell to
100 Plus: How the Coming Age of Longevity Will Change Everything, From Careers and Relationships to Family And
by Sonia Arrison · 22 Aug 2011 · 381pp · 78,467 words
$1,000 genome (or less) is in sight. Indeed, a partial DNA scan can already be had for only $199 at consumer genomics companies like 23andMe, and that company is using its data sets to attempt to link certain diseases to specific genes, important work on the way toward individually tailored
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silk stockings, to the rich paying $20 in 1915 for a three-minute phone call from New York to San Francisco. Indeed, when genomics firm 23andMe (founded in 2006) first offered its DNA tests, the price was $1,000 for less information than is now available today at the $199 price
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fringe conference, think again. The headliner for the event was venture capitalist (VC) Ester Dyson, who sits on the board of directors for genomics company 23andMe and is a former chairman of the illustrious Internet Corporation for Assigned Names and Numbers, the agency governing the Internet address system. Hedge fund manager
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a well-known aging expert and one of Larry Ellison’s award recipients.68 Sergey Brin is spreading the meme in a more personal way. 23andMe is a genomics company that was cofounded by Brin’s biologist wife, Anne Wojcicki, and has gone a long way toward popularizing the idea of
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to cure disease. One high-profile party took place during New York City’s Fashion Week. Company staffers recounted the event on their blog, saying, “23andMe managed to lure a few hundred people away from the catwalks Tuesday night to consider the beauty that lies within—DNA. Our Fashion Week spit
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about his predisposition, Brin has reportedly contributed some $50 million to the cause, which is in addition to the $3.9 million Google invested in 23andMe after Brin made an initial loan of $2.6 million.71 It is worth pointing out here that Brin is not a wealthy man who
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–163. 45 Comments on Andrew Hessel’s Web page, http://openwetware.org/wiki/Andrew_Hessel (last accessed July 9, 2010). 46 The $199 price for 23andMe’s service requires a $5 per month subscription to the company’s personal genome service. This is far less expensive than the $1,000 the
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, June 26–27, 2007, www.nlm.nih.gov/ep/trainingconf2007agenda.html#22. 69 Matt C, “23andMe Struts Its Stuff in NYC During Fashion Week,” The Spittoon, September 11, 2008, http://spittoon.23andme.com/2008/09/11/23andme-struts-its-stuff-in-nyc-during-fashion-week/. 70 Andrew Pollack, “Google Co-founder Backs Vast
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Parkinson’s Study,” New York Times, March 11, 2009, www.nytimes.com/2009/03/12/business/12gene.html?_r=1. 71 Leena Rao, “While 23andMe Raises $11 Million, Mohr Davidow Sells Stake to Invest in Rival,” TechCrunch, May 4, 2009, http://techcrunch.com/2009/05/04/while-23 andme-raises
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, The (Gladwell) Tissue engineering Tobacco Topel, Robert Trachea(fig.) Training Transcendence Transhumanism Transistors Trauma repair Treder, Mike True Blood (HBO series) Truth Tuberculosis Turkey Turtles 23andMe company Twilight movie series Uncertainty United Nations United Religious Initiative (URI) United States, life expectancy in Urban Tribes (Watters) URI. See United Religious Initiative U
Masters of Scale: Surprising Truths From the World's Most Successful Entrepreneurs
by Reid Hoffman, June Cohen and Deron Triff · 14 Oct 2021 · 309pp · 96,168 words
needed to establish trust with an old-school industry that viewed him as a threat, Anne Wojcicki, founder of the DNA testing and analysis company 23andMe, faced even more formidable hurdles as she launched her business. She had to take on both the entrenched healthcare establishment and the U.S. government
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, people would say, ‘Wouldn’t my doctor pay for that? Why am I paying for it? What would I do with the results?’ ” As the 23andMe founders grappled with the problem of reaching consumers, Anne’s marketing team suggested a messaging pivot. Instead of emphasizing a health-information angle
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, 23andMe began playing up the joys of discovering and sharing your ancestry. Bingo—customers warmed to the idea of getting closer to their roots. And if
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learned about my health risks from DNA testing—what should I do?” Doctors were used to being the gatekeepers of that type of information. So 23andMe began an ongoing effort to convince physicians that it was a good thing for patients to be proactively asking more questions about their health. But
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the biggest challenge for 23andMe was dealing with state and federal regulators. One particularly challenging gatekeeper was the U.S. Food and Drug Administration. Anne and her team had been
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meeting with the FDA since early days, but because 23andMe was a first-of-its-kind company, government regulators didn’t know how to classify it. (Note to readers: Occasionally, being a first-in-field
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, the FDA classified genetic tests as “medical devices,” requiring federal approval. Later, a new team of FDA regulators sent a cease-and-desist letter to 23andMe, claiming it was offering medical advice and was thus a “healthcare product.” Anne was frustrated: “It was the first time in my experience where the
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committed to doing that.’ ” Anne’s response: “I’m not going anywhere. What else do I have to do? I’m committed.” Anne and her 23andMe team decided to slow down the rollout of new products. Usually this is the last thing a founder should do. But in
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23andMe’s case, no one else was going to swoop in and grab market share—the FDA was a hard barrier that someone would need to
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through. Anne decided it would be her. Although working with the FDA would prove slow and sometimes painful, it would build the trust that allowed 23andMe to grow in the long term. “Our work with the FDA changed our company a lot,” says Anne. “Our engineers, the way we develop, the
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the FDA that the product is accurate, which is something that we always felt confident in.” The company also had to convince the FDA that 23andMe was providing consumers with enough information to fully understand their DNA test results, so they hired a dedicated regulation consultant to help guide them through
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this long process. It has taken years to work through the issues with the FDA—and it’s still ongoing. But in the meantime, 23andMe has steadily built its consumer base, while helping the FDA to understand the value and benefits of enabling more people to do genetic testing. “There
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investors. Payal Kadakia of ClassPass built her business around the vision of helping people become more active and find their fitness passion. Anne Wojcicki of 23andMe started her genetic testing business with the goal of empowering people to gain more control of their healthcare information. And Charles Best launched DonorsChoose with
The Science and Technology of Growing Young: An Insider's Guide to the Breakthroughs That Will Dramatically Extend Our Lifespan . . . And What You Can Do Right Now
by Sergey Young · 23 Aug 2021 · 326pp · 88,968 words
number of affordable genetic testing services on the market can identify your genetic predisposition to disease using nothing more than a swab of your saliva. 23andMe and other consumer products, for instance, offer genotyping (which examines about ~0.02 percent of DNA to find mutations that may contribute to various health
…
health, which is changing how medicine is practiced. Following the $2.5 billion blockbuster market reception of the direct-to-consumer (DTC) genetic testing company 23andMe, diagnostic services that focus on “omes” are exploding. Mind you, this technology still has a long way to go before it can be reliably, widely
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-consumer diagnostic companies, retain the right to sell your anonymized data to pharmaceutical makers, research institutions, insurance companies, and others. In early 2020, for example, 23andMe entered into a licensing agreement with Spanish pharma company Almirall to develop a drug from customer data.29 There are even totally legal ways to
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. What about the direct-to-consumer (DTC) diagnostic tests that we met in the pages of this book? DTC early insight into your health, like 23andMe, Nebula Genomics, DNAFit, Chronomics, Viome, and Thryve, offer convenient, low-cost ways to study your genes, epigenome, and gut flora. Is it really worth it
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April 8, 2019, https://www.cnbc.com/2019/04/08/apple-could-top-300-billion-in-sales-from-health-care-morgan-stanley.html. 29Jessica Hamzelou, “23andMe has sold the rights to develop a drug based on its users’ DNA,” New Scientist, last modified January 10, 2020, https://www.newscientist.com/article
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/2229828-23andme-has-sold-the-rights-to-develop-a-drug-based-on-its-users-dna/. 30Gregory Barber and Megan Molteni, “Google Is Slurping Up Health Data—and
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Tel Aviv University telemedicine telexistence Telexistence, Inc. telomerase telomeres Tesla Theranos 3D bioprinting Thryve tissue regeneration Topol, Eric Total Artificial Heart transcriptome Transmedics Traveso, Giovanni 23andMe U UC San Francisco UK Biobank University of Maryland University of Rochester V vaccines Vanderbilt University Venter, Craig Verburgh, Kris Verdin, Eric Vetter, David Joseph
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Blockchain: Blueprint for a New Economy
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50 Future Ideas You Really Need to Know
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Money: Vintage Minis
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Immortality, Inc.
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The AI-First Company
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Eat People: And Other Unapologetic Rules for Game-Changing Entrepreneurs
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The Great Experiment: Why Diverse Democracies Fall Apart and How They Can Endure
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The Coming Wave: Technology, Power, and the Twenty-First Century's Greatest Dilemma
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