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Personal Genome Project

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assessment to evaluate participants’ memory functions, including object recall, object pattern memorization, and response times. The researchers would then correlate extremely high performance scores with naturally occurring variations in the participants’ genomes. To validate their findings, the team would sequence, edit, and visualize DNA, model neuronal development in 3-D brain organoids ex vivo, and finally test emerging hypotheses in experimental models of neurodegeneration.
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The PGP is establishing an international network of sites, including the United States (Harvard PGP), Canada (University of Toronto / Hospital for Sick Kids), and other countries that adhere to certain "conforming implementation" criteria such as no promise of anonymity and data return. The Harvard
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In February 2018, the results were published of the first 56 Canadian participants who had their whole genome analyzed. Several DNA mutations that would have been expected by expert consensus to affect health of the participants had not done so, indicating that getting health data from the human
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Scientists at the Wyss Institute for Biologically Inspired Engineering and the Harvard Medical School Personal Genome Project (PGP) planned to recruit 10,000 members from the PGP, to perform a set of cognitive tests from Lumos Labs’ NeuroCognitive Performance Test, a brief, repeatable, online
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in 2005. As of November 2017, more than 10,000 volunteers had joined the project. Volunteers were accepted initially if they were permanent residents of the US and were able to submit tissue and/or genetic samples. Later the project was expanded to other countries.
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requested that the first set of volunteers include the principal investigator George Church and other diverse stakeholders in the scientific, medical, and social implications of personal genomes, because they were well positioned to give highly
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On March 9, 2017, producers of the popular online brain-training program Lumosity announced they would collaborate with Harvard researchers to investigate the relationship between genetics and memory, attention, and reaction speed.
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becomes cheaper, and the societal issues mentioned above are worked out, it was hoped that a large number of volunteers from all walks of life would participate. The long-term goal was that every person have access to his or her
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An important part of the project was the exploration of the resulting risks to the participants, such as possible discrimination by insurers and employers if the genome shows a predisposition for certain diseases.
179:, the head of the UK arm of this project indicated that they had over 1000 volunteers, and had temporarily paused collection data due to lack of funding. As of November 2016, the pause was still in effect. 334: 616: 103:. Participants could decide what data they are comfortable to publish publicly and could choose to upload additional data or remove existing data at their own convenience. 772: 52:
The Project was initially launched in the US in 2005 and later extended to Canada (2012), United Kingdom (2013), Austria (2014), Korea (2015) and China (2017).
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Since 2016, participants of the PGP could choose to obtain their whole-genome sequenced performed for $ 999. In the same year
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In July 2014, at the 'Genetics, Genomics and Global Health—Inequalities, Identities and Insecurities' conference,
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In order to enroll, each participant must pass a series of short online tests to ensure that they are providing
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and publicize the complete genomes and medical records of 100,000 volunteers, in order to enable research into
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Reuter MS, Walker S, Thiruvahindrapuram B, Whitney J, Cohn I, Sondheimer N, et al. (February 2018).
593: 96: 32: 137: 383: 212: 480: 153: 36: 309: 172:. By 2012, 2000 participants had enrolled and by November 2017 10,000 had joined the project. 710: 661: 630:"The whole genome sequences and experimentally phased haplotypes of over 100 personal genomes" 574: 492: 310:"Scientist at Work: George M. Church - On a Mission to Sequence the Genomes of 100,000 People" 271: 217: 183: 28: 700: 692: 651: 641: 564: 554: 523: 261: 253: 169: 117: 40: 617:"Veritas Genetics Launches $ 999 Whole Genome And Sets New Standard For Genetic Testing" 541:
Ball MP, Thakuria JV, Zaranek AW, Clegg T, Rosenbaum AM, Wu X, et al. (July 2012).
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Mao Q, Ciotlos S, Zhang RY, Ball MP, Chin R, Carnevali P, et al. (October 2016).
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The first ten volunteers were referred to as the "PGP-10". These volunteers were:
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so that researchers could test various hypotheses about the relationships among
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Proceedings of the National Academy of Sciences of the United States of America
730:"Cracks in the code: Why mapping your DNA may be less reliable than you think" 646: 72: 335:"Would you make your DNA and health data public if it may help cure disease?" 559: 100: 76: 714: 665: 578: 496: 275: 753: 126: 92: 88: 64: 696: 384:"Genom Austria launches as a new member of the Personal Genome Project" 257: 527: 516:"Your Personal Genome: George Church wants to sequence your genome" 795: 594:"DNAdigest interviews Personal Genome Project: UK - DNAdigest.org" 75:) of the volunteers, along with extensive information about their 54: 390:. American Association for the Advancement of Science. 2014-11-25 360:"Critics urge caution as UK genome project hunts for volunteers" 59:
fMRI of the head of a 58 yr old male participant in the project.
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Misha Angrist, Duke Institute for Genome Sciences and Policy
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contributed over 184 phased human genomes to the project.
543:"A public resource facilitating clinical use of genomes" 773:"Brain-training app creators join in the genetics game" 23:(PGP) is a long term, large cohort study which aims to 16:
Cohort study sequencing genomes of 100,000 volunteers
156:, Helicos BioSciences, Kirk Maxey, Cayman Chemical, 63:The project allowed participants to publish the 129:to be used for personalized medical decisions. 83:images, etc. All data were placed within the 8: 442:"Personal Genome Project Expands to China" 704: 655: 645: 568: 558: 265: 79:: medical records, various measurements, 754:"Personal Genome Project-Lumosity Study" 229: 760:. Harvard University. 10 October 2017. 7: 503:from the original on 21 August 2007. 435: 433: 235: 233: 160:, Boston stem cell researcher, and 479:Angrist M, Cook-Deegan RM (2006). 14: 140:, Genomic Healthcare Strategies, 409:"Genome Korea in Ulsan Launched" 1: 592:Kovalevskaya N (2016-11-16). 242:"The personal genome project" 514:Singer E (6 December 2007). 415:. 2015-11-25. Archived from 289:Singer E (20 January 2006). 87:and made available over the 491:. Washington, D.C.: 87–96. 839: 771:Hysolli E (9 March 2017). 152:, Harvard Medical School, 113:Institutional Review Board 647:10.1186/s13742-016-0148-z 466:"Personal Genome Project" 246:Molecular Systems Biology 728:Abraham C (2018-02-03). 440:Addison F (2017-11-03). 333:Abraham C (2012-12-07). 560:10.1073/pnas.1201904109 358:Sample I (2013-11-07). 308:Duncan D (2010-06-07). 21:Personal Genome Project 481:"Who owns the genome?" 190:genome was difficult. 146:Rosalynn Gill-Garrison 144:, EDventure Holdings, 60: 35:. It was initiated by 813:Human genome projects 779:. Harvard University. 122:sequencing technology 58: 33:personalized medicine 213:Human Genome Project 194:PGP Lumosity Project 697:10.1503/cmaj.171151 446:Front Line Genomics 734:The Globe and Mail 339:The Globe and Mail 314:The New York Times 258:10.1038/msb4100040 240:Church GM (2005). 61: 37:Harvard University 777:The Daily Gazette 520:Technology Review 295:Technology Review 218:Personal genomics 184:Complete Genomics 29:personal genomics 830: 799: 798: 796:Official website 781: 780: 768: 762: 761: 750: 744: 743: 741: 740: 725: 719: 718: 708: 691:(5): E126–E136. 676: 670: 669: 659: 649: 625: 619: 614: 608: 607: 605: 604: 589: 583: 582: 572: 562: 538: 532: 531: 511: 505: 504: 476: 470: 469: 462: 456: 455: 453: 452: 437: 428: 427: 425: 424: 405: 399: 398: 396: 395: 380: 374: 373: 371: 370: 355: 349: 348: 346: 345: 330: 324: 323: 321: 320: 305: 299: 298: 286: 280: 279: 269: 252:(1): 2005.0030. 237: 170:informed consent 138:Keith Batchelder 118:informed consent 41:George M. Church 838: 837: 833: 832: 831: 829: 828: 827: 803: 802: 794: 793: 790: 785: 784: 770: 769: 765: 752: 751: 747: 738: 736: 727: 726: 722: 678: 677: 673: 627: 626: 622: 615: 611: 602: 600: 591: 590: 586: 553:(30): 11920–7. 540: 539: 535: 513: 512: 508: 478: 477: 473: 464: 463: 459: 450: 448: 439: 438: 431: 422: 420: 407: 406: 402: 393: 391: 382: 381: 377: 368: 366: 357: 356: 352: 343: 341: 332: 331: 327: 318: 316: 307: 306: 302: 288: 287: 283: 239: 238: 231: 226: 209: 196: 111:Medical School 50: 17: 12: 11: 5: 836: 834: 826: 825: 823:DNA sequencing 820: 818:Cohort studies 815: 805: 804: 801: 800: 789: 788:External links 786: 783: 782: 763: 758:Wyss Institute 745: 720: 671: 620: 609: 584: 533: 528:10.2172/918689 506: 471: 457: 429: 400: 375: 350: 325: 300: 281: 228: 227: 225: 222: 221: 220: 215: 208: 205: 195: 192: 166: 165: 49: 46: 15: 13: 10: 9: 6: 4: 3: 2: 835: 824: 821: 819: 816: 814: 811: 810: 808: 797: 792: 791: 787: 778: 774: 767: 764: 759: 755: 749: 746: 735: 731: 724: 721: 716: 712: 707: 702: 698: 694: 690: 686: 682: 675: 672: 667: 663: 658: 653: 648: 643: 639: 635: 631: 624: 621: 618: 613: 610: 599: 595: 588: 585: 580: 576: 571: 566: 561: 556: 552: 548: 544: 537: 534: 529: 525: 521: 517: 510: 507: 502: 498: 494: 490: 486: 482: 475: 472: 467: 461: 458: 447: 443: 436: 434: 430: 419:on 2018-02-04 418: 414: 410: 404: 401: 389: 385: 379: 376: 365: 361: 354: 351: 340: 336: 329: 326: 315: 311: 304: 301: 296: 292: 285: 282: 277: 273: 268: 263: 259: 255: 251: 247: 243: 236: 234: 230: 223: 219: 216: 214: 211: 210: 206: 204: 200: 193: 191: 187: 185: 180: 178: 173: 171: 163: 162:Steven Pinker 159: 158:James Sherley 155: 151: 147: 143: 139: 135: 134: 133: 130: 128: 123: 119: 114: 108: 104: 102: 98: 94: 90: 86: 85:public domain 82: 78: 74: 70: 66: 57: 53: 47: 45: 42: 38: 34: 30: 26: 22: 776: 766: 757: 748: 737:. Retrieved 733: 723: 688: 684: 674: 637: 633: 623: 612: 601:. Retrieved 597: 587: 550: 546: 536: 519: 509: 488: 485:New Atlantis 484: 474: 460: 449:. Retrieved 445: 421:. Retrieved 417:the original 413:Bio-IT World 412: 403: 392:. Retrieved 387: 378: 367:. Retrieved 364:the Guardian 363: 353: 342:. Retrieved 338: 328: 317:. Retrieved 313: 303: 294: 284: 249: 245: 201: 197: 188: 181: 177:Stephan Beck 174: 167: 154:Stan Lapidus 150:John Halamka 142:Esther Dyson 131: 109: 105: 69:DNA sequence 62: 51: 20: 18: 634:GigaScience 388:EurekAlert! 97:environment 73:chromosomes 807:Categories 739:2018-02-03 603:2018-02-03 598:DNA digest 451:2018-02-03 423:2018-02-03 394:2018-02-03 369:2018-02-03 344:2018-02-03 319:2010-08-18 224:References 148:, Sciona, 71:of all 46 67:(the full 640:(1): 42. 164:, Harvard 101:phenotype 77:phenotype 48:The Study 715:29431110 666:27724973 579:22797899 501:Archived 497:16789312 276:16729065 207:See also 127:genotype 93:genotype 89:Internet 65:genotype 25:sequence 706:5798982 657:5057367 570:3409785 267:1681452 713:  703:  664:  654:  577:  567:  495:  274:  264:  120:. As 711:PMID 685:CMAJ 662:PMID 575:PMID 493:PMID 272:PMID 99:and 31:and 19:The 701:PMC 693:doi 689:190 652:PMC 642:doi 565:PMC 555:doi 551:109 524:doi 262:PMC 254:doi 81:MRI 39:'s 809:: 775:. 756:. 732:. 709:. 699:. 687:. 683:. 660:. 650:. 636:. 632:. 596:. 573:. 563:. 549:. 545:. 522:. 518:. 499:. 489:11 487:. 483:. 444:. 432:^ 411:. 386:. 362:. 337:. 312:. 293:. 270:. 260:. 248:. 244:. 232:^ 95:, 742:. 717:. 695:: 668:. 644:: 638:5 606:. 581:. 557:: 530:. 526:: 468:. 454:. 426:. 397:. 372:. 347:. 322:. 297:. 278:. 256:: 250:1

Index

sequence
personal genomics
personalized medicine
Harvard University
George M. Church

genotype
DNA sequence
chromosomes
phenotype
MRI
public domain
Internet
genotype
environment
phenotype
Institutional Review Board
informed consent
sequencing technology
genotype
Keith Batchelder
Esther Dyson
Rosalynn Gill-Garrison
John Halamka
Stan Lapidus
James Sherley
Steven Pinker
informed consent
Stephan Beck
Complete Genomics

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