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Practical barriers and ethical challenges in genetic data sharing.
Simpson CL, Goldenberg AJ, Culverhouse R, Daley D, Igo RP, Jarvik GP, Mandal DM, Mascalzoni D, Montgomery CG, Pierce B, Plaetke R, Shete S, Goddard KA, Stein CM. Simpson CL, et al. Int J Environ Res Public Health. 2014 Aug 15;11(8):8383-98. doi: 10.3390/ijerph110808383. Int J Environ Res Public Health. 2014. PMID: 25153467 Free PMC article.
The underlying ethos of dbGaP is that access to these data by secondary data analysts facilitates advancement of science. ...In response, we recommend longer embargo periods and use of varied data-sharing models rather than a one-size-fits-all approach …
The underlying ethos of dbGaP is that access to these data by secondary data analysts facilitates advancement of science. ...I …
Proceedings of the 8th Annual Conference on the Science of Dissemination and Implementation : Washington, DC, USA. 14-15 December 2015.
Chambers D, Simpson L, Hill-Briggs F, Neta G, Vinson C, Chambers D, Beidas R, Marcus S, Aarons G, Hoagwood K, Schoenwald S, Evans A, Hurford M, Rubin R, Hadley T, Barg F, Walsh L, Adams D, Mandell D, Martin L, Mignogna J, Mott J, Hundt N, Kauth M, Kunik M, Naik A, Cully J, McGuire A, White D, Bartholomew T, McGrew J, Luther L, Rollins A, Salyers M, Cooper B, Funaiole A, Richards J, Lee A, Lapham G, Caldeiro R, Lozano P, Gildred T, Achtmeyer C, Ludman E, Addis M, Marx L, Bradley K, VanDeinse T, Wilson AB, Stacey B, Powell B, Bunger A, Cuddeback G, Barnett M, Stadnick N, Brookman-Frazee L, Lau A, Dorsey S, Pullmann M, Mitchell S, Schwartz R, Kirk A, Dusek K, Oros M, Hosler C, Gryczynski J, Barbosa C, Dunlap L, Lounsbury D, O’Grady K, Brown B, Damschroder L, Waltz T, Powell B, Ritchie M, Waltz T, Atkins D, Imel ZE, Xiao B, Can D, Georgiou P, Narayanan S, Berkel C, Gallo C, Sandler I, Brown CH, Wolchik S, Mauricio AM, Gallo C, Brown CH, Mehrotra S, Chandurkar D, Bora S, Das A, Tripathi A, Saggurti N, Raj A, Hughes E, Jacobs B, Kirkendall E, Loeb D, Trinkley K, Yang M, Sprowell A, Nease D, Lyon A, Lewis C, Boyd M, Melvin A, Nicodimos S, Liu F, Jungbluth N, Lyon A, Lewis C, Boyd M, Melvin A, Nicodimos S, Liu F, Jungbluth N, Flynn A, Landis-Lewis Z, Sales A, Baloh J, Ward M, Zhu X, Bennett I, Unutzer J, Mao J, Proctor E, Vredevoogd M, Chan YF, Williams N, Green P, Bernstein S, Rosner JM, DeWitt M, Tetrault J, Dziura J, Hsiao A, Sussman S, O’Connor P, Toll B, Jones M, Gassaway J, Tobin J, Zatzick D, Bradbury AR, Patrick-Miller L, Egleston B, Olopade OI, Hall MJ, Daly MB, Fleisher L, Grana G, Ganschow P, Fetzer D, Brandt A, Farengo-Clark D, Forman A, Gaber RS, Gulden C, Horte J, Long J, Chambers RL, Lucas T, Madaan S, Mattie K, McKenna D, Montgomery S, Nielsen S, Powers J, Rainey K, Rybak C, Savage M, Seelaus C, Stoll J, Stopfer J, Yao S, Domchek S, Hahn E, Munoz-Plaza C, Wang J, Delgadillo JG, Mittman B, Gould M, Liang S, Kegler MC, Cotter M, Phillips E, Hermstad A, Morton R, Beasley D, Martinez J, Riehman K, Gustafson D, Marsch L, Mares L, Quanbeck A, McTavish F, McDowell H, Brown R, Thomas C, Glass J, Isham J, Shah D, Liebschutz J, Lasser K, Watkins K, Ober A, Hunter S, Lamp K, Ewing B, Iwelunmor J, Gyamfi J, Blackstone S, Quakyi NK, Plange-Rhule J, Ogedegbe G, Kumar P, Van Devanter N, Nguyen N, Nguyen L, Nguyen T, Phuong N, Shelley D, Rudge S, Langlois E, Tricco A, Ball S, Lambert-Kerzner A, Sulc C, Simmons C, Shell-Boyd J, Oestreich T, O’Connor A, Neely E, McCreight M, Labebue A, DiFiore D, Brostow D, Ho PM, Aron D, Harvey J, McHugh M, Scanlon D, Lee R, Soltero E, Parker N, McNeill L, Ledoux T, McIsaac JL, MacLeod K, Ata N, Jarvis S, Kirk S, Purtle J, Dodson E, Brownson R, Mittman B, Curran G, Curran G, Pyne J, Aarons G, Ehrhart M, Torres E, Miech E, Miech E, Stevens K; I.S.R.N. Steering Council, Hamilton A, Cohen D, Padgett D, Morshed A, Patel R, Prusaczyk B, Aron DC, Gupta D, Ball S, Hand R, Abram J, Wolfram T, Hastings M, Moreland-Russell S, Tabak R, Ramsey A, Baumann A, Kryzer E, Montgomery K, Lewis E, Padek M, Powell B, Brownson R, Mamaril CB, Mays G, Branham K, Timsina L, Mays G, Hogg R, Fagan A, Shapiro V, Brown E, Haggerty K, Hawkins D, Oesterle S, Hawkins D, Catalano R, McKay V, Dolcini MM, Hoffer L, Moin T, Li J, Duru OK, Ettner S, Turk N, Chan C, Keckhafer A, Luchs R, Ho S, Mangione C, Selby P, Zawertailo L, Minian N, Balliunas D, Dragonetti R, Hussain S, Lecce J, Chinman M, Acosta J, Ebener P, Malone PS, Slaughter M, Freedman D, Flocke S, Lee E, Matlack K, Trapl E, Ohri-Vachaspati P, Taggart M, Borawski E, Parrish A, Harris J, Kohn M, Hammerback K, McMillan B, Hannon P, Swindle T, Curran G, Whiteside-Mansell L, Ward W, Holt C, Santos SL, Tagai E, Scheirer MA, Carter R, Bowie J, Haider M, Slade J, Wang MQ, Masica A, Ogola G, Berryman C, Richter K, Shelton R, Jandorf L, Erwin D, Truong K, Javier JR, Coffey D, Schrager SM, Palinkas L, Miranda J, Johnson V, Hutcherson V, Ellis R, Kharmats A, Marshall-King S, LaPradd M, Fonseca-Becker F, Kepka D, Bodson J, Warner E, Fowler B, Shenkman E, Hogan W, Odedina F, De Leon J, Hooper M, Carrasquillo O, Reams R, Hurt M, Smith S, Szapocznik J, Nelson D, Mandal P, Teufel J. Chambers D, et al. Implement Sci. 2016 Aug 1;11 Suppl 2(Suppl 2):100. doi: 10.1186/s13012-016-0452-0. Implement Sci. 2016. PMID: 27490260 Free PMC article.
Steering Council S52 PANEL: Qualitative methods in D&I Research: Value, rigor and challenge - The value of qualitative methods in implementation research Alison Hamilton S53 PANEL: Qualitative methods in D&I Research: Value, rigor and challenge - Learning ev …
Steering Council S52 PANEL: Qualitative methods in D&I Research: Value, rigor and challenge - The value of qualitative methods in …
Sharing and re-use of phylogenetic trees (and associated data) to facilitate synthesis.
Stoltzfus A, O'Meara B, Whitacre J, Mounce R, Gillespie EL, Kumar S, Rosauer DF, Vos RA. Stoltzfus A, et al. BMC Res Notes. 2012 Oct 22;5:574. doi: 10.1186/1756-0500-5-574. BMC Res Notes. 2012. PMID: 23088596 Free PMC article.
BACKGROUND: Recently, various evolution-related journals adopted policies to encourage or require archiving of phylogenetic trees and associated data. Such attention to practices that promote sharing of data reflects rapidly improving information …
BACKGROUND: Recently, various evolution-related journals adopted policies to encourage or require archiving of phylogenetic trees and associ …
IRB practices and policies regarding the secondary research use of biospecimens.
Goldenberg AJ, Maschke KJ, Joffe S, Botkin JR, Rothwell E, Murray TH, Anderson R, Deming N, Rosenthal BF, Rivera SM. Goldenberg AJ, et al. BMC Med Ethics. 2015 May 8;16:32. doi: 10.1186/s12910-015-0020-1. BMC Med Ethics. 2015. PMID: 25953109 Free PMC article.
Variation in IRB biobanking policies about these issues has not been well documented. METHODS: This paper reports on data from a survey of IRB Administrative Directors from 60 institutions affiliated with the Clinical and Translation Science Awards (CTSAs) about their poli …
Variation in IRB biobanking policies about these issues has not been well documented. METHODS: This paper reports on data from a surv …
Unleashing the power of human genetic variation knowledge: New Zealand stakeholder perspectives.
Gu Y, Warren JR, Day KJ. Gu Y, et al. Genet Med. 2011 Jan;13(1):26-38. doi: 10.1097/GIM.0b013e3181f9648a. Genet Med. 2011. PMID: 21068671 Free article.
PURPOSE: This study aimed to characterize the challenges in using genetic information in health care and to identify opportunities for improvement. METHODS: Taking a grounded theory approach, semistructured interviews were conducted with 48 participants to co …
PURPOSE: This study aimed to characterize the challenges in using genetic information in health care and to identify op …
Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life.
Mc Cartney AM, Anderson J, Liggins L, Hudson ML, Anderson MZ, TeAika B, Geary J, Cook-Deegan R, Patel HR, Phillippy AM. Mc Cartney AM, et al. Proc Natl Acad Sci U S A. 2022 Jan 25;119(4):e2115860119. doi: 10.1073/pnas.2115860119. Proc Natl Acad Sci U S A. 2022. PMID: 35042810 Free PMC article.
The field of genomics has benefited greatly from its "openness" approach to data sharing. However, with the increasing volume of sequence information being created and stored and the growing number of international genomics efforts, the equity of openness is …
The field of genomics has benefited greatly from its "openness" approach to data sharing. However, with the increasing volume …