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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.
In 2013, a proposed updated policy extended this requirement to next-generation sequencing data. However, recent literature and anecdotal reports suggest lingering logistical and ethical concerns about subject identifiability, informed consent, publication embargo e …
In 2013, a proposed updated policy extended this requirement to next-generation sequencing data. However, recent literature and anecd …
Data sharing in neurodegenerative disease research: challenges and learnings from the innovative medicines initiative public-private partnership model.
Bradshaw A, Hughes N, Vallez-Garcia D, Chokoshvili D, Owens A, Hansen C, Emmert K, Maetzler W, Killin L, Barnes R, Brookes AJ, Visser PJ, Hofmann-Apitius M, Diaz C, Steukers L. Bradshaw A, et al. Front Neurol. 2023 Jul 20;14:1187095. doi: 10.3389/fneur.2023.1187095. eCollection 2023. Front Neurol. 2023. PMID: 37545729 Free PMC article. Review.
The Neuronet data sharing Working Group was set up to understand the existing barriers to data sharing in public-private partnership projects, and to provide guidance to overcome these barriers, by convening data sharing exp …
The Neuronet data sharing Working Group was set up to understand the existing barriers to data sharing in …
Age-Based Genomic Screening during Childhood: Ethical and Practical Considerations in Public Health Genomics Implementation.
Milko LV, Berg JS. Milko LV, et al. Int J Neonatal Screen. 2023 Jun 27;9(3):36. doi: 10.3390/ijns9030036. Int J Neonatal Screen. 2023. PMID: 37489489 Free PMC article.
The age-based genomic screening (ABGS) approach is a novel alternative to genome-scale sequencing at birth that aims to provide highly actionable genetic information to parents over the course of their child's routine health care. ABGS utilizes an established metric …
The age-based genomic screening (ABGS) approach is a novel alternative to genome-scale sequencing at birth that aims to provide highly actio …
Rare diseases and space health: optimizing synergies from scientific questions to care.
Puscas M, Martineau G, Bhella G, Bonnen PE, Carr P, Lim R, Mitchell J, Osmond M, Urquieta E, Flamenbaum J, Iaria G, Joly Y, Richer É, Saary J, Saint-Jacques D, Buckley N, Low-Decarie E. Puscas M, et al. NPJ Microgravity. 2022 Dec 22;8(1):58. doi: 10.1038/s41526-022-00224-5. NPJ Microgravity. 2022. PMID: 36550172 Free PMC article. Review.
Here, we compare and contrast research and healthcare in the contexts of rare diseases and space health and identify common barriers and avenues of improvement. The prevalent genetic basis of most rare disorders contrasts sharply with the occupational considerations …
Here, we compare and contrast research and healthcare in the contexts of rare diseases and space health and identify common barriers …
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 …
Genetic research within Indigenous communities: Engagement opportunities and pathways forward.
Barton KS, Porter KM, Mai T, Claw KG, Hiratsuka VY, Carroll SR, Burke W, Garrison NA. Barton KS, et al. Genet Med. 2024 Jul;26(7):101158. doi: 10.1016/j.gim.2024.101158. Epub 2024 Apr 30. Genet Med. 2024. PMID: 38699966 Free article.
PURPOSE: Against a historical backdrop of researchers who violated trust through lack of benefit sharing, transparency, and engagement, efforts are underway to develop better approaches for genetic and genomic research with Indigenous communities. To increase engage …
PURPOSE: Against a historical backdrop of researchers who violated trust through lack of benefit sharing, transparency, and engagemen …
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 …
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 …
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, Melv… See abstract for full author list ➔ 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 …