Будущее медицины: Ваше здоровье в ваших руках Тополь Эрик

Глава 4

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-brings-genetics-company-halt-and-fda/print.

3. M. Dowd, "Cascading Confessions," New York Times, May 15, 2013, http://www.nytimes.com/2013/05/15/opinion/dowd-cascading-confessions.html.

4. "Angelina Jolie," Wikipedia, accessed August 13, 2014, http://en.wikipedia.org/wiki/Angelina_Jolie.

5. K. Blake, "Angelina Jolie Effect: Breast Cancer Awareness vs. Knowledge," Health News from Health Canal, December 20, 2013, http://www.healthcanal.com/cancers/breast-cancer/46121-angelina-jolie-effect-breast-cancer-awareness-vs-knowledge.html.

6. A. L. Caplan, "The Actress, the Court, and What Needs to Be Done to Guarantee the Future of

Clinical Genomics," PLoS Biology 11, no. 9 (2013): e1001663.

7. T. E. Board, "Angelina Jolie's Disclosure," New York Times, May 18, 2013, http://www.nytimes.com/2013/05/18/opinion/angelina-jolies-disclosure.html.

8. D. L. G. Borzekowski et al., "The Angelina Effect: Immediate Reach, Grasp, and Impact of Going Public," Genetics in Medicine, December 19, 2013, http://www.nature.com/gim/journal/vaop/ ncurrent/pdf/gim2013181a.pdf.

9. A. Breznican, "Angelina Jolie Recounts 'All the Kindness' That Helped Her Through Her HealthScare," Entertainment Weekly, March 5, 2014, http://insidemovies.ew.com/2014/03/05/angelina-jolie-health-exclusive/.

10. E. Christakis, "Angelina's Mastectomy: Altered Bodies Are Already the Norm," TIME, May 15, 2013, http://ideas.time.com/2013/05/15/angelinas-surgery-altered-body-parts-are-already-the-norm/print/.

11. L. Rothman, "Angelina Jolie's Public-Image Turnaround," TIME, May 14, 2013, http://entertainment.time.com/2013/05/14/angelina-jolies-public-i-turnaround/print/.

12. J. Kluger and A. Park, "The Angelina Effect," TIME, May 27, 2013, http://content.time.com/time/subscriber/ printout/0,8816,2143559,00.html.

13. D. Kotz, "Increase in Breast Cancer Gene Screening: The Angelina Jolie Effect," Boston Globe, December 3, 2013, http://www.boston.com/lifestyle/health/blogs/daily-dose/2013/12/03/increase-breast-cancer-gene-screening-the-angelina-jolie-effect/2HsXjeZh6MdTE5B8T3nGMI/blog.html.

14. L. Corner, "Why Are More Women Having Mastectomies?" The Independent, December 1, 2013, http://www.independent.co.uk/life-style/health-and-families/features/why-are-more-women-having-mastectomies-8969889.html.

15. P. Orenstein, "Reacting to Angelina Jolie's Breast Cancer News," 6th Floor, May 15, 2013, http://6thfloor.blogs.nytimes.com/2013/05/15/reacting-to-angelina-jolies-breast-cancer-news/.

16. K. Pickert, "Lessons from Angelina: The Tricky Calculus of Cancer Testing," TIME, May 15, 2013, http://nation.time.com/2013/05/15/lessons-from-angelina-the-tricky-calculus-of-cancer-testing/print/.

17. P. B. Bach, "A Pioneering Force," Town & Country, October 2013, http://www.townandcountrymag.com/print-this/dr-kristi-funk-pink-lotus?page=all.

18. K. Funk, "A Patient's Journey: Angelina Jolie," Breast Cancer 101, May 14, 2013, http://pinklotusbreastcenter.com/breast-cancer-101/2013/05/a-patients-journey-angelina-jolie/.

19. A. W. Kepler, "Angelina Jolie's Aunt Dies of Breast Cancer," New York Times, May 27, 2013, http://artsbeat.blogs.nytimes.com/2013/05/27/angelina-jolies-aunt-dies-of-breast-cancer/.

20. M. Melton, "Dr. Kristi Funk," Los Angeles Magazine, September 10, 2013, http://www.lamag.com/lawoman/article/2013/09/10/dr-kristi-funk.

21. R. C. Rabin, "No Easy Choices on Breast Reconstruction," New York Times, May 20, 2013, http://well.blogs.nytimes.com/2013/05/20/no-easy-choices-on-breast-reconstruction/.

22. D. Grady, T. Parker-Pope, and P. Belluck, "Jolie's Disclosure of Preventive Mastectomy High– lights Dilemma," New York Times, May 15, 2013, http://www.nytimes.com/2013/05/15/health/angelina-jolies-disclosure-highlights-a-breast-cancer-dilemma.html.

23. H. D. Nelson et al., "Risk Assessment, Genetic Counseling, and Genetic Testing for BRCA– Related Cancer in Women: A Systematic Review to Update the US Preventive Services Task Force Recommendation," Annals of Internal Medicine 160 (2014): 255–266.

24. G. Rennert et al., "Clinical Outcomes of Breast Cancer in Carriers of BRCA1 and BRCA2 Mutations," New England Journal of Medicine 357, no. 2 (2007): 115–123.

25. R. Winslow, "Early Ovary Removal Reduces Long-Term Cancer Risk: Study," Wall Street Journal, February 24, 2013, http://online.wsj.com/news/article_email/ SB10001424052702304834704579403421175065210 -lMyQ jAxMTA0MDIwNTEyNDUyWj.

26. A. P. Finch et al., "Impact of Oophorectomy on Cancer Incidence and Mortality in Women with a BRCA1 or BRCA2 Mutation," Journal of Clinical Oncology 32, no. 15 (2014): 1549–1554.

27. N. D. Kauff et al., "Risk-Reducing Salpingo-oophorectomy in Women with a BRCA1 or BRCA2 Mutation," New England Journal of Medicine 346, no. 21 (2002): 1609–1615.

28. S. J. Hoffman and C. Tan, "Following Celebrities' Medical Advice: Meta-Narrative Analysis," British Medical Journal 347 (2013): f 7151.

29. J. Bulluz and S. J. Hoffman, "Katie Couric and the Celebrity Medicine Syndrome," Los Angeles Times, December 18, 2013, http://www.latimes.com/opinion/commentary/la-oe-hoffman-celebrities-health-advice-20131218,0,3861833.story.

30. K. Kamenova, A. Reshef, and T. Caulfield, "Angelina Jolie's Faulty Gene: Newspaper Coverage of a Celebrity's Preventive Bilateral Mastectomy in Canada, the United States, and the United Kingdom," Genetics in Medicine 16, no. 7 (2013): 522–528, http://www.nature.com/gim/journal/ vaop/ncurrent/full/gim2013199a.html.

31. "Myriad Genetics Q1 Revenues Shoot up 52 Percent; Angelina Jolie Effect Cited," GenomeWeb, November 6, 2013, http://www.genomeweb.com/clinical-genomics/myriad-genetics-q1-revenues-shoot-52-percent-angelina-jolie-effect-cited.

32. R. C. Rabin, "In Israel, a Push to Screen for Cancer Gene Leaves Many Conflicted," New York Times, November 27, 2013, 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-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.gov/ICECI/EnforcementActions/ WarningLetters/2013/ucm376296.htm.

35. A. Pollack, "FDA Orders Genetic Testing Firm to Stop Selling DNA Analysis Service," New York Times, November 26, 2013, http://www.nytimes.com/2013/11/26/business/fda-demands-a-halt-to-a-dna-test-kits-marketing.html.

36. A. Pollack, "Genetic Tester to Stop Providing Data on Health Risks," New York Times, December 6, 2013, http://www.nytimes.com/2013/12/06/business/genetic-tester-to-stop-providing-data-on-health-risks.html.

37. F. Polli, "Why 23andMe Deserves a Second Chance," Forbes, January 14, 2014, http://www.forbes.com/sites/fridapolli/2014/01/14/why-23andme-deserves-a-second-chance/.

38. T. Ray, "Facing FDA Warning Letter and Lawsuit, Can 23andMe Stay True to Its DTC Credo in 15 Days?" GenomeWeb, December 4, 2013, http://www.genomeweb.com/print/1319176?utm_source=SilverpopMai%C9 PGx Uncertainty.

39. R. Rekhi, "A Government Ban on 23andMe's Genetic Testing Services Ignores Reality," The Guardian, December 4, 2013, http://www.theguardian.com/commentisfree/2013/dec/04/23andme-consumer-genomics-fda-ban-regulation/print.

40. R. Khan, "The FDA's Battle With 23andMe Won'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," Genome Biology 14 (2013): 139, http://genomebiology.com/2013/14/11/139.

42. C. J. Janssens, "It Is Game Over for 23andMe, and Rightly So," The Conversation, November 26, 2013, http://theconversation.com/it-is-game-over-for-23andme-and-rightly-so-20744.

43. L. Jamal, "What Do We Gain or Lose by Regulating 23andMe?" Berman Institute of Bioethics Bulletin, November 27, 2013, http://bioethicsbulletin.org/archive/what-do-we-gain-or-lose-by-regulating-23andme/print/.

44. T. Hay, "23andMe Flap With FDA 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 on 23andMe – Now What?" Law and Biosciences Blog, November 25, 2013, https://blogs.law.stanford.edu/lawandbiosciences/2013/11/25/the-fda-drops-an-anvil-on-23andme-now-what/.

46. M. F. Murray, "Why We Should Care About What We Get for 'Only $99' From a Personal Genomic Service," Annals of Internal Medicine 160, no. 7 (2014): 507–508.

47. G. Neff, "In the Battle Over Personal Health Data, 23andMe and the FDA Are Both Wrong," Slate, December 13, 2013, http://www.slate.com/blogs/future_tense/2013/ 12/13/_23andme_vs_the_fda_both_are_wrong.html.

48. R. Bailey, "Let My Genes Go! And Leave 23andMe Alone," Reason.com, November 29, 2013, http://reason.com/archives/2013/11/29/why-the-fda-should-leave-23andme-alone/print.

49. S. Usdin, "The Sky Isn't Falling," BioCentury, June 17, 2013, http://www.biocentury.com/biotech-pharma-news/politics/2013-06-17/scotus-myriad-protects-biotech-patenting-but-leaves-important-gray-areas-a13.

50. E. Vayena, "Direct-to-Consumer Genomics on the Scales of Autonomy," Journal of Medical Ethics, May 5, 2014, http://jme.bmj.com/content/early/2014/05/05/medethics-2014-102026.full.

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-just-a-cease-desist-letter-from-the-fda-to-23andme/.

52. "Doing the Genomic Revolution Right," Huffngton Post, December 20, 2013, http://www.huffingtonpost.com/tricia-page/doing-the-genomic-revolution-right_b_4480887.html?view=print&comm_ref=false.

53. A. J. Burke, "23andMe's FDA Battle Provokes Furious Debate," Techonomy, December 2, 2013, http://techonomy.com/2013/12/just-tip-iceberg-23andme-medicine/.

54. "Multiple Testing an Issue for 23andMe," Bits of DNA, November 30, 2013, http://liorpachter.wordpress.com/2013/11/30/23andme-genotypes-are-all-wrong/.

55. "23andMe: State of Debate," Bio-IT World, November 27, 2013, http://www.bio-itworld.com/2013/11/27/23andme-state-of-debate.html.

56. M. Hiltzik, "23andMe's Genetic Tests Are More Misleading Than Helpful," Los Angeles Times, December 15, 2013, http://www.latimes.com/business/la-fi-hiltzik-20131215,0,1359952.column.

57. K. Hill, "The FDA Just Ruined Your Plans to Buy 23andMe's DNA Test as a Christmas Present," Forbes, November 25, 2013, http://www.forbes.com/sites/kashmirhill/2013/11/25/fda-23andme/.

58. L. Kish, "The Social Conquest of Medicine: The 23andMe and Conflict," HL7 Standards, January 7, 2014, http://www.hl7standards.com/blog/2014/01/07/23andme/.

59. J. Kiss, "23andMe Admits FDA Order 'Significantly Slowed Up' New Customers," The Guardian, March 9, 2014, http://www.theguardian.com/technology/2014/mar/09/google-23andme-anne-wojcicki-genetics-healthcare-dna/print.

60. A. Krol, "Show, Don't Tell: 23andMe Pursues Health Research in the Shadow of the FDA,"Bio-IT World, March 24, 2014, http://www.bio-it world.com/2014/3/24/show-dont-tell-23andme-pursues-health-research-shadow-fda.html.

61. D. Kroll, "Why The FDA Can't Be Flexible With 23andMe," Forbes, November 28, 2013, http://www.forbes.com/sites/davidkroll/2013/11/28/why-the-fda-cant-be-flexible-with-23andme-by-law/.

62. P. Loftus, "23andMe Stops Genetic Test Marketing," Wall Street Journal, December 2, 2013, http://online.wsj.com/news/articles/ SB10001424052702304579404579234503409624522.

63. P. Loftus, "Genetic Test Service 23andMe Ordered to Halt Marketing by FDA," Wall Street Journal, November 25, 2013: http://online.wsj.com/news/articles/ SB10001424052702304281004579219893863966448.

64. P. Loftus and R. Winslow, "23andMe CEO Responds to FDA Warning Letter," Wall Street Journal, November 27, 2013, http://online.wsj.com/news/articles/ SB10001424052702303332904579224093983156448.

65. G. Lyon, "Stopping 23andMe Will Only Delay the Revolution Medicine Needs," The Conversation, November 25, 2013, http://theconversation.com/stopping-23andme-will-only-delay-the-revolution-medicine-needs-20743.

66. V. Hughes, "23 a nd You," Medium, December 4, 2013, https://medium.com/matter/66e87553d22c.

67. "The FDA vs. 23andMe: A Lesson for Health Care Entrepreneurs," Knowledge at Wharton(K@W), December 18, 2013, http://knowledge.wharton.upenn.edu/article/fda-vs-23andme-lesson-health-care-entrepreneurs/.

68. R. Bailey, "Leave 23andMe Alone," Reason.com, February 25, 2014, http://reason.com/archives/2014/02/25/leave-23andme-alone/print.

69. H. Binswanger, "FDA Says, 'No Gene Test for You: You Can't Handle the Truth,'" Forbes, November 26, 2013, http://www.forbes.com/sites/harrybinswanger/2013/11/26/fda-says-no-gene-test-for-you-you-cant-handle-the-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, 2014: http://www.psmag.com/navigation/nature-and-technology/fda-anti-genetics-72987/.

73. C. Wood, "Does the FDA Think You're Stupid?" Casey Research, December 5, 2013, http://www.caseyresearch.com/cdd/does-the-fda-think-youre-stupid.

74. C. Farr, "23andMe Remains Optimistic Despite FDA Issues: 'We Are Not Going Anywhere' (Exclusive)," Venture Beat, December 7, 2013, http://venturebeat.com/2013/12/07/23andme-remains-defiant-despite-fda-issues-we-are-not-going-anywhere-exclusive/2/.

75. L. Downes and P. Nunes, "Regulating 23andMe to Death Won't Stop the New Age of Genetic Testing," Wired, January 1, 2014, http://www.wired.com/opinion/2014/01/the-fda-may-win-the-battle-this-holiday-season-but-23andme-will-win-the-war/.

76. N. S. Downing and J. S. Ross, "Innovation, Risk, and Patient Empowerment The FDA-Mandated Withdrawal of 23andMe's Personal Genome Service," Journal of the American Medical Association 311, no. 8 (2014): 793–794.

77. "Irresistible Force Meets Immoveable Object," Nature Biotechnology 32, no. 1 (2014): 1.

78. D. Dobbs, "The F.D.A. vs. Personal Genetic Testing," New Yorker, November 27, 2013, http://www.newyorker.com/online/blogs/elements/2013/11/the-fda-vs-personal-genetic-testing.html?printable=true&currentPage=all.

79. 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 BRCA Mutation Testing," PeerJ, February 12, 2013, https://peerj.com/articles/8/.

81. R. Epstein, "The FDA Strikes Again: Its Ban on Home Testing Kits Is, as Usual, Likely to Do More Harm Than Good," Point of Law, November 27, 2013: http://www.pointoflaw.com/archives/2013/11/t.php.

82. A. Wolfe, "Anne Wojcicki's Quest for Better Health Care," Wall Street Journal, June 27, 2014, http://online.wsj.com/articles/anne-wojcickis-quest-for-better-health-care-1403892088.

83. C. Bloss, N. Schork, and E. Topol, "Effect of Direct-to-Consumer Genomewide Profiling to Assess Disease Risk," New England Journal of Medicine 364, no. 6 (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/ 2013/10/23andme-andy-page-anne-wojcicki.html?page=all.

86. N. Fliesler, "Direct-to-Consumer Genetic Testing: A Case of Potential Harm," Boston Children's Hospital science and clinical innovation blog, May 5, 2014, http://vectorblog.org/2014/05/direct-to-consumer-genetic-testing-a-case-of-potential-harm/.

87. S. Pasha, "23andMe Revealed a Condition It Took My Doctors Six Years to Diagnose," Quartz, November 28, 2013, http://qz.com/151817/23andme-revealed-a-condition-it-took-my-doctors-six-years-to-diagnose/.

88. "The FDA and Thee," Wall Street Journal, November 25, 2013: http://online.wsj.com/news/articles/SB10001424052702304465604579220003539640102.

89. M. A. Hamburg, "FDA Supports Development of Innovative Genetic Tests," Wall Street Journal, December 3, 2013: http://online.wsj.com/news/articles/ SB10001424052702304011304579222111609444156.

90. F. S. Collins and M. A. Hamburg, "First FDA Authorization for Next-Generation Sequencer," New England Journal of Medicine 369 (2013): 2369–2371.

91. "Regulation of Laboratory Developed Tests (LDTs)," American Society for Clinical Pathology, 2010, http://www.ascp.org/PDF/Advocacy/Regulation-of-laboratory-developed-tests-LDTs.aspx.

92. P. Offt, Do You Believe in Magic? (New York, NY: HarperCollins, 2013).

93. A. O'Connor, "Spike in Harm to Liver Is Tied to Dietary Aids," New York Times, December 22, 2013, http://www.nytimes.com/2013/12/22/us/spike-in-harm-to-liver-is-tied-to-dietary-aids.html.

94. J. Pickrell, "Should the FDA Regulate the Interpretation of Traditional Epidemiology?" Genomes Unzipped, February 12, 2013, http://www.genomesunzipped.org/2013/12/should-the-fda-regulate-the-interpretation-of-traditional-epidemiology.php.

95. D. Dobbs, "Is the National Cancer Institute Telling Me to Remove My Breasts?" 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 FDA and me," Nature 504 (2013): 7–8.

98. C. Seife, "23andMe Is Terrifying, but Not for the Reasons the FDA Thinks," Scientific American, November 27, 2013, http://www.scientificamerican.com/article.cfm?id=23andme-is-terrifying-but-not-for-reasons-fda.

99. A. R. Venkitaraman, "Cancer Suppression by the Chromosome Custodians, BRCA1 and BRCA2," Science 343 (2014): 1470–1475.

100. D. B. Agus, "The Outrageous Cost of a Gene Test," New York Times, May 21, 2013, http://www.nytimes.com/2013/05/21/opinion/the-outrageous-cost-of-a-gene-test.html.

101. Supreme Court of the United States, "Association for Molecular Pathology et al. versus Myriad Genetics, Inc., et al." SCOTUS, 2013, http://www.supremecourt.gov/opinions/12pdf/12-398_1b7d.pdf.

102. M. Specter, "Can We Patent Life?" New Yorker, April 1, 2013, http://www.newyorker.com/online/blogs/elements/2013/04/myriad-genetics-patent-genes.html.

103. E. Marshall, "Supreme Court Rules Out Patents on 'Natural' Genes," Science 340 (2013): 1387–1388.

104. N. Feldman, "The Supreme Court's Bad Science on Gene Patents," Bloomberg View, June 13, 2013, http://www.bloombergview.com/articles/2013-06-13/the-supreme-court-s-bad-science-on-gene-patents.

105. R. Cook-Deegan, "Are Human Genes Patentable?" Annals of Internal Medicine 159, no. 4 (2013): 298–299.

106. N. Totenberg, "Supreme Court Asks: Can Human Genes Be Patented?" NPR Shots, April 15, 2013, http://www.npr.org/blogs/health/2013/04/15/177035299/supreme-court-asks-can-human-genes-be-patented.

107. E. J. Topol, "DNA & Supreme Court: Nature Cannot Be Patented," Union-Tribune San Diego, April 27, 2013, http://www.utsandiego.com/news/2013/apr/27/dna-supreme-court-nature-cannot-be-patented/.

108. J. Guo, "The Supreme Court Reveals Its Ignorance of Genetics," New Republic, June 13, 2013, http://www.newrepublic.com//article/113476/supreme-court-genetics-ruling-reveals-judges-ignorance.

109. D. J. Kevles, "Can They Patent Your Genes?" New York Review of Books, March 7, 2013, http://www.nybooks.com/articles/archives/2013/mar/07/can-they-patent-your-genes/.

110. C. Y. Johnson, "Eric Lander Weighs In on Gene Patenting Case," Boston Globe, February 26, 2013, http://www.bostonglobe.com/lifestyle/health-wellness/2013/02/26/eric-lander-human-genome-project-leader-weighs-supreme-court-gene-patenting-case/EjRae5IRYwUYRVLg6NXTZL/story.html.

111. L. O. Gostin, "Who Owns Human Genes? Is DNA Patentable?" Journal of the American Medical Association 310, no. 8 (2013): 791–792.

112. G. Mohan, "Researchers Hail Supreme Court Decision on Gene Patent," Los Angeles Times, June 13, 2013, http://www.latimes.com/news/science/sciencenow/la-sci-sn-gene-patent-reaction-20130613,0,6362625,print.story.

113. H. Ledford, "Myriad Ruling Causes Confusion," Nature 498 (2013): 281–282.

114. S. Reardon, "I Discovered the BRCA Genes," Slate, June 15, 2013, http://www.slate.com/articles/health_and_science/ new_scientist/2013/06/brca_gene_discovery_mary_ claire_king_says_the_supreme_court_is_right_not.html.

115. J. Carlson, "Myriad Stock Falls as Competitors Offer Lower Prices for Gene Testing," Modern Healthcare, June 13, 2013, http://www.modernhealthcare.com/article/20130613/NEWS/306139947/.

116. J. Walker, "Reimbursement for Breast-Cancer Risk Test to Be Cut," Wall Street Journal, December 29, 2013, http://online.wsj.com/news/article_email/ SB10001424052702304361604579288591617575358 -lMyQjAxMTA0MDIwOTEyNDkyWj.

117. C. Gunter, "SCOTUS Ruling Means Cheaper Genetic Testing," Double X Science, June 14, 2013, http://www.doublexscience.org/myriad-genetics-ruling/.

118. J. Carlson, "'The Cost Will Drop,'" Modern Healthcare, June 15, 2013, http://www.modernhealthcare.com/article/ 20130615/MAGAZINE/306159974/.

119. M. Scudellari, "Myriad Sues Developers of Competing Breast Cancer Tests," Nature Medicine 19, no. 8 (2013): 948.

120. R. Nussbaum, "Free Our Genetic Data," MIT Technology Review, July 25, 2013, http://www.technologyreview.com/view/517526/free-our-genetic-data/.

121. "Life on Mars? Discover Magazine Announces the Top 100 Stories of 2013," Discover, Jan – Feb 2014, http://discovermagazine.com/2014/jan-feb.

Глава 5

1. A. Pentland, «How Big Data Can Transform Society for the Better,» Scientific American, October 1, 2014, http://www.scientificamerican.com/article/how-big-data-can-transform-society-for-the-better/.

2. S. Lohr, "Sizing Up Big Data, Broadening Beyond the Internet," New York Times, June 19, 2013, http://bits.blogs.nytimes.com/2013/06/19/sizing-up-big-data-broadening-beyond-the-internet/.

3. "Epidemiolog y," Wikipedia, accessed August 13, 2014, 2014, http://en.wikipedia.org/wiki/Epidemiology.

4. J. L. Gardy et al., "Whole-Genome Sequencing and Social-Network Analysis of a Tuberculosis Outbreak," The New England Journal of Medicine 364 (2011): 730–739.

5. E. Topol, "Individualized Medicine from Prewomb to Tomb," Cell 157 (2014): 241–253.

6. T. Simonite, "Life's Trajectory Seen Through Facebook Data," MIT Technology Review, April 24, 2013, http://www.technologyreview.com/view/514186/lifes-trajectory-seen-through-facebook-data/.

7. A. Regalado, "Stephen Wolfram on Personal Analytics," MIT Technology Review, May 8, 2013, http://www.technologyreview.com/news/514356/stephen-wolfram-on-personal-analytics/.

8. N. A. Christakis and J. H. Fowler, Connected (New York, NY: Little, Brown and Co., 2009).

9. "Phenotype," Wikipedia, accessed August 13, 2014, http://en.wikipedia.org/wiki/Phenotype.

10. "Microphones as Sensors: Teaching Old Microphones New Tricks," The Economist, June 1, 2013, http://www.economist.com/news/technology-quarterly/21578518-sensor-technology-microphones-are-designed-capture-sound-they-turn-out.

11. G. Slabodkin, "Study: iPhone App for Speech Laterality Just as Reliable as Lab Brain Tests,"FierceMobileHealthcare, February 12, 2013, http://www.fiercemobilehealthcare.com/story/study-iphone-app-speech-laterality-just-reliable-lab-brain-tests/2013-02-12.

12. I. Ezkurdia et al., "Multiple Evidence Strands Suggest That There May Be as Few as 19,000 Human Protein-Coding Genes," Human Molecular Genetics, June 16, 2014, http://www.ncbi.nlm.nih.gov/pubmed/24939910.

13. A. Butte, "Should Healthy People Have Their Genomes Sequenced at This Time?" Wall Street Journal, February 15, 2013, http://online.wsj.com/news/articles/SB1000087 2396390443884104577645783975993656.

14. E. C. Hayden, "Non-Invasive Method Devised to Sequence DNA of Human Eggs," Nature News & Comment, December 19, 2013, http://www.nature.com/news/non-invasive-method-devised-to-sequence-dna-of-human-eggs-1.14412.

15. R. W. Taylor et al., "Use of Whole-Exome Sequencing to Determine the Genetic Basis of Multiple Mitochondrial Respiratory Chain Complex Deficiencies," Journal of the American Medical Association 312, no. 1 (2014): 68–77.

16. J. Lupski, "Genetics. Genome Mosaicism– One Human, Multiple Genomes," Science 341 (2013): 358–359.

17. M. J. McConnell et al., "Mosaic Copy Number Variation in Human Neurons," Science 342 (2013): 632.

18. I. Cho and M. Blaser, "The Human Microbiome: At the Interface of Health and Disease," Nature Reviews Genetics 13 (2012): 260–270.

19. R. Chen et al., "Personal Omics Profiling Reveals Dynamic Molecular and Medical Phenotypes," Cell 148 (2012): 1293–1307.

20. E. Aiden and J.-B. Michel, "The Predictive Power of Big Data," Newsweek, December 25, 2013, http://www.newsweek.com/predictive-power-big-data-225125.

21. R. Almeling, "The Unregulated Sperm Industry," New York Times, December 1, 2013, http://www.nytimes.com/2013/12/01/opinion/sunday/the-unregulated-sperm-industry.html.

22. M. Allyse and M. Michie, "You Can't Predict Destiny by Designing Your Baby's Genome," Wall Street Journal, November 8, 2013, http://online.wsj.com/news/articles/SB10001424 052702304448204579182353852538422.

23. G. Naik, "'Designer Babies:' Patented Process Could Lead to Selection of Genes for Specific Traits," Wall Street Journal, October 3, 2013, http://online.wsj.com/article/SB10001424052 702303492504579113293429460678.html.

24. S. Morain, M. Greene, and M. Mello, "A New Era of Noninvasive Prenatal Testing," New England Journal of Medicine 369 (2013): 499–501.

25. A. Agarwal et al., "Commercial Landscape of Noninvasive Prenatal Testing in the United States," Prenatal Diagnosis 33 (2013): 521–531.

26. Illumina, "Verinata Health's verifi® Prenatal Test Available Through the California Prenatal Screening Program," Illumina Investor Relations News Release, November 1, 2013, http://investor.illumina.com/phoenix.zhtml?c=121127&p=irol-newsArticle&ID=1871236&highlight=.

27. A. Schaffer, "Too Much Information," MIT Technology Review, December 17, 2013, http://www.technologyreview.com/review/522661/too-much-information/.

28. A. D. Marcus, "Genetic Testing Leaves More Patients Living in Limbo," Wall Street Journal, November 20, 2013, http://online.wsj.com/news/articles/SB100014240 52702303755504579206000052566432.

29. B. Wilcken, "Newborn Screening: Gaps in the Evidence," Science 342 (2013): 197–198.

30. E. Gabler, "Delays at Hospitals Across the Country Undermine Newborn Screening Programs, Putting Babies at Risk of Disability and Death," Journal Sentinel, November 16, 2013, http://www.jsonline.com/watchdog/watchdogreports/Deadly-Delays-Watchdog-Report-Delays-at-hospitals-across-the-country-undermine-newborn-screening-programs-putting-babies-at-risk-of-disability-and-death-228832111.html.

31. R. Greenfield, "Tracked Since Birth: The Rise of Extreme Baby Monitoring," Fast Company, November 15, 2013, http://www.fastcompany.com/3021601/innovation-agents/tracked-since-birth-the-pros-and-cons-of-extreme-baby-monitoring.

32. D. Epstein, The Sports Gene (New York, NY: Penguin, 2013), 256.

33. W. Koh et al., "Noninvasive In Vivo Monitoring of Tissue-Specific Global Gene Expression in Humans," PNAS Early Edition, May 2, 2014, http://www.pnas.org/content/early/2014/05/02/1405528111.

34. A. R. McLean, "Coming to an Airport Near You," Science 342 (2013): 1330–1331.

35. M. R. Wilson et al., "Actionable Diagnosis of Neuroleptospirosis by Next-Generation Sequencing," New England Journal of Medicine, June 19, 2014, http://www.nejm.org/doi/full/10.1056/NEJMoa1401268.

36. J. N. Weinstein et al., "The Cancer Genome Atlas Pan-Cancer Analysis Project," Nature Genetics 45, no. 10 (2013): 1113–1120.

37. G. Frampton et al., "Development and Validation of a Clinical Cancer Genomic Profiling Test Based on Massively Parallel DNA Sequencing," Nature Biotechnology 31 (2013): 1023–1031.

38. J. Couzin-Frankel, "Cancer Immunotherapy," Science 342 (2013): 1432–1433.

39. A. L. Williams et al., "Sequence Variants in SLC16A11 Are a Common Risk Factor for Type 2 Diabetes in Mexico," Nature 506 (2014): 97–101.

40. J. C. Florez et al., "Association of a Low-Frequency Variant in HNF1A With Type 2 Diabetes in a Latino Population," Journal of the American Medical Association 311, no. 22 (2014): 2305–2314.

41. I. Moltke et al., "A Common Greenlandic TBC1D4 Variant Confers Muscle Insulin Resistance and Type 2 Diabetes," Nature, June 18, 2014, http://www.nature.com/nature/journal/ vaop/ncurrent/full/nature13425.html.

42. A. R. Harper and E. J. Topol, "Pharmacogenomics in Clinical Practice and Drug Development," Nature Biotechnology 30, no. 11 (2012): 1117–1124.

43. C.-H. Chen et al., "Variant GADL1 and Response to Lithium Therapy in Bipolar I Disorder," New England Journal of Medicine 370 (2013): 119–128.

44. A. B. Jorgensen et al., "Loss-of-Function Mutations in APOC3 and Risk of Ischemic Vascular Disease," New England Journal of Medicine, July 3, 2014, http://www.nejm.org/doi/full/10.1056/NEJMoa1308027.

45. A. K. Pandey et al., "Functionally Enigmatic Genes: A Case Study of the Brain Ignorome," PLoSOne 9, no. 2 (2014): 1–11.

46. M. M. Newman, "Sudden Cardiac Arrest: A Healthcare Crisis," Sudden Cardiac Arrest Foundation, 2013, accessed August 18, 2014 http://www.sca-aware.org/about-sca.

Глава 6

1. A. Sabar, «Inside the Technology That Can Turn Your Smartphone into a Personal Doctor,» Smithsonian, May 2014, http://www.smithsonianmag.com/innovation/inside-technology-can-turn-your-smartphone-personal-doctor-180951177/?no-ist.

2. R. Parloff, "This CEO Is Out for Blood," Fortune, June 12, 2014, http://fortune.com/2014/06/12/theranos-blood-holmes/.

3. D. Goldhill, "'Catastrophic Care': An Exchange," New York Review of Books, October 24, 2013, http://www.nybooks.com/articles/archives/2013/oct/24/catastrophic-care-exchange/.

4. D. Sipress, "It's a simple stress test – I do your blood work, send it to the lab, and never get back to you with the results," New Yorker, accessed August 18, 2014, http://www.condenaststore.com/-sp/It-s-a-simple-stress-test-I-do-your-blood-work-send-it-to-the-lab-and-n-Prints_i9373568_.html.

5. J. Rago, "Elizabeth Holmes: The Breakthrough of Instant Diagnosis," Wall Street Journal, September 8, 2013, http://online.wsj.com/article/SB100014241278873241230045790550 03869574012.html – printMode.

6. D. Hernandez, "What Health Care Needs Is a Real-Time Snapshot of You," Wired Science, November 6, 2013, http://www.wired.com/wiredscience/2013/11/wired-data-life-theranos.

7. L. H. Bernstein, "Stanford Dropout Is Already Drawing Comparisons with Steve Jobs," Pharmaceutical Magazine, November 26, 2013, http://pharmaceuticalintelligence.com/2013/11/26/stanford-dropout-is-already-drawing-comparisons-with-steve-jobs/.

8. Theranos, "Welcome to a Revolution in Lab Testing," accessed August 13, 2014, http://www.theranos.com.

9. E. J. Topol and E. Holmes, "Creative Disruption? She's 29 and Set to Reboot Lab Medicine," Medscape, November 18, 2013, http://www.medscape.com/viewarticle/814233_print.

10. F. N. Pelzman, "Patients Must Be Given the Results of Their Tests," KevinMD, November 28, 2013, http://www.kevinmd.com/blog/2013/11/patients-results-tests.html.

11. T. D. Giardina and H. Singh, "Should Patients Get Direct Access to Their Laboratory Test Results?" Journal of the American Medical Association 306, no. 22 (2011): 2502.

12. K. Christensen, "Viewing Laboratory Test Results Online: Patients' Actions and Reactions," Journal of Participatory Medicine, October 3, 2013, http://www.jopm.org/evidence/research/2013/10/03/viewing-laboratory-test-results-online-patients-actions-and-reactions/.