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Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.
McGuire AL, Majumder MA, Villanueva AG, Bardill J, Bollinger JM, Boerwinkle E, Bubela T, Deverka PA, Evans BJ, Garrison NA, Glazer D, Goldstein MM, Greely HT, Kahn SD, Knoppers BM, Koenig BA, Lambright JM, Mattison JE, O'Donnell C, Rai AK, Rodriguez LL, Simoncelli T, Terry SF, Thorogood AM, Watson MS, Wilbanks JT, Cook-Deegan R. McGuire AL, et al. Among authors: garrison na. J Law Med Ethics. 2019 Mar;47(1):12-20. doi: 10.1177/1073110519840480. J Law Med Ethics. 2019. PMID: 30994067 Free PMC article.
Return of genomic results to research participants: the floor, the ceiling, and the choices in between.
Jarvik GP, Amendola LM, Berg JS, Brothers K, Clayton EW, Chung W, Evans BJ, Evans JP, Fullerton SM, Gallego CJ, Garrison NA, Gray SW, Holm IA, Kullo IJ, Lehmann LS, McCarty C, Prows CA, Rehm HL, Sharp RR, Salama J, Sanderson S, Van Driest SL, Williams MS, Wolf SM, Wolf WA; eMERGE Act-ROR Committee and CERC Committee; CSER Act-ROR Working Group; Burke W. Jarvik GP, et al. Among authors: garrison na. Am J Hum Genet. 2014 Jun 5;94(6):818-26. doi: 10.1016/j.ajhg.2014.04.009. Epub 2014 May 8. Am J Hum Genet. 2014. PMID: 24814192 Free PMC article.
When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority.
Brothers KB, Holm IA, Childerhose JE, Antommaria AHM, Bernhardt BA, Clayton EW, Gelb BD, Joffe S, Lynch JA, McCormick JB, McCullough LB, Parsons DW, Sundaresan AS, Wolf WA, Yu JH, Wilfond BS; Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium. Brothers KB, et al. J Pediatr. 2016 Jan;168:226-231.e1. doi: 10.1016/j.jpeds.2015.09.020. Epub 2015 Oct 23. J Pediatr. 2016. PMID: 26477867 Free PMC article. No abstract available.
Creating a data resource: what will it take to build a medical information commons?
Deverka PA, Majumder MA, Villanueva AG, Anderson M, Bakker AC, Bardill J, Boerwinkle E, Bubela T, Evans BJ, Garrison NA, Gibbs RA, Gentleman R, Glazer D, Goldstein MM, Greely H, Harris C, Knoppers BM, Koenig BA, Kohane IS, La Rosa S, Mattison J, O'Donnell CJ, Rai AK, Rehm HL, Rodriguez LL, Shelton R, Simoncelli T, Terry SF, Watson MS, Wilbanks J, Cook-Deegan R, McGuire AL. Deverka PA, et al. Among authors: garrison na. Genome Med. 2017 Sep 22;9(1):84. doi: 10.1186/s13073-017-0476-3. Genome Med. 2017. PMID: 28938910 Free PMC article.
Chaco Canyon Dig Unearths Ethical Concerns.
Claw KG, Lippert D, Bardill J, Cordova A, Fox K, Yracheta JM, Bader AC, Bolnick DA, Malhi RS, TallBear K, Garrison NA. Claw KG, et al. Among authors: garrison na. Hum Biol. 2017 Jul;89(3):177-180. doi: 10.13110/humanbiology.89.3.01. Hum Biol. 2017. PMID: 29745246 Free PMC article.
Exploring pathways to trust: a tribal perspective on data sharing.
James R, Tsosie R, Sahota P, Parker M, Dillard D, Sylvester I, Lewis J, Klejka J, Muzquiz L, Olsen P, Whitener R, Burke W; Kiana Group. James R, et al. Genet Med. 2014 Nov;16(11):820-6. doi: 10.1038/gim.2014.47. Epub 2014 May 15. Genet Med. 2014. PMID: 24830328 Free PMC article. Review.
90 results