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APPLaUD: access for patients and participants to individual level uninterpreted genomic data.
Thorogood A, Bobe J, Prainsack B, Middleton A, Scott E, Nelson S, Corpas M, Bonhomme N, Rodriguez LL, Murtagh M, Kleiderman E; Participant Values Task Team of the Global Alliance for Genomics and Health. Thorogood A, et al. Among authors: prainsack b. Hum Genomics. 2018 Feb 17;12(1):7. doi: 10.1186/s40246-018-0139-5. Hum Genomics. 2018. PMID: 29454384 Free PMC article. Review.
'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods.
Middleton A, Niemiec E, Prainsack B, Bobe J, Farley L, Steed C, Smith J, Bevan P, Bonhomme N, Kleiderman E, Thorogood A, Schickhardt C, Garattini C, Vears D, Littler K, Banner N, Scott E, Kovalevskaya NV, Levin E, Morley KI, Howard HC. Middleton A, et al. Among authors: prainsack b. Per Med. 2018 Jul 1;15(4):311-318. doi: 10.2217/pme-2018-0032. Epub 2018 Jun 1. Per Med. 2018. PMID: 29856292 Free article.
Attitudes of publics who are unwilling to donate DNA data for research.
Middleton A, Milne R, Thorogood A, Kleiderman E, Niemiec E, Prainsack B, Farley L, Bevan P, Steed C, Smith J, Vears D, Atutornu J, Howard HC, Morley KI. Middleton A, et al. Among authors: prainsack b. Eur J Med Genet. 2019 May;62(5):316-323. doi: 10.1016/j.ejmg.2018.11.014. Epub 2018 Nov 23. Eur J Med Genet. 2019. PMID: 30476628 Free PMC article.
Consent insufficient for data release.
Nicol D, Eckstein L, Bentzen HB, Borry P, Burgess M, Burke W, Chalmers D, Cho M, Dove E, Fullerton S, Ida R, Kato K, Kaye J, Koenig B, Manson S, McGrail K, Meslin E, O'Doherty K, Prainsack B, Shabani M, Tabor H, Thorogood A, de Vries J. Nicol D, et al. Among authors: prainsack b. Science. 2019 May 3;364(6439):445-446. doi: 10.1126/science.aax0892. Science. 2019. PMID: 31048483 No abstract available.
Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia.
Milne R, Morley KI, Howard H, Niemiec E, Nicol D, Critchley C, Prainsack B, Vears D, Smith J, Steed C, Bevan P, Atutornu J, Farley L, Goodhand P, Thorogood A, Kleiderman E, Middleton A; Participant Values Work Stream of the Global Alliance for Genomics and Health. Milne R, et al. Among authors: prainsack b. Hum Genet. 2019 Dec;138(11-12):1237-1246. doi: 10.1007/s00439-019-02062-0. Epub 2019 Sep 17. Hum Genet. 2019. PMID: 31531740 Free PMC article.
Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data.
Middleton A, Milne R, Howard H, Niemiec E, Robarts L, Critchley C, Nicol D, Prainsack B, Atutornu J, Vears DF, Smith J, Steed C, Bevan P, Scott ER, Bobe J, Goodhand P, Kleiderman E, Thorogood A, Morley KI; Participant Values Work Stream of the Global Alliance for Genomics and Health. Middleton A, et al. Among authors: prainsack b. Eur J Hum Genet. 2020 Apr;28(4):424-434. doi: 10.1038/s41431-019-0550-y. Epub 2019 Nov 29. Eur J Hum Genet. 2020. PMID: 31784701 Free PMC article.
Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?
Middleton A, Milne R, Almarri MA, Anwer S, Atutornu J, Baranova EE, Bevan P, Cerezo M, Cong Y, Critchley C, Fernow J, Goodhand P, Hasan Q, Hibino A, Houeland G, Howard HC, Hussain SZ, Malmgren CI, Izhevskaya VL, Jędrzejak A, Jinhong C, Kimura M, Kleiderman E, Leach B, Liu K, Mascalzoni D, Mendes Á, Minari J, Wang N, Nicol D, Niemiec E, Patch C, Pollard J, Prainsack B, Rivière M, Robarts L, Roberts J, Romano V, Sheerah HA, Smith J, Soulier A, Steed C, Stefànsdóttir V, Tandre C, Thorogood A, Voigt TH, West AV, Yoshizawa G, Morley KI. Middleton A, et al. Among authors: prainsack b. Am J Hum Genet. 2020 Oct 1;107(4):743-752. doi: 10.1016/j.ajhg.2020.08.023. Epub 2020 Sep 17. Am J Hum Genet. 2020. PMID: 32946764 Free PMC article.
Public involvement in the governance of population-level biomedical research: unresolved questions and future directions.
Erikainen S, Friesen P, Rand L, Jongsma K, Dunn M, Sorbie A, McCoy M, Bell J, Burgess M, Chen H, Chico V, Cunningham-Burley S, Darbyshire J, Dawson R, Evans A, Fahy N, Finlay T, Frith L, Goldenberg A, Hinton L, Hoppe N, Hughes N, Koenig B, Lignou S, McGowan M, Parker M, Prainsack B, Shabani M, Staunton C, Thompson R, Varnai K, Vayena E, Williams O, Williamson M, Chan S, Sheehan M. Erikainen S, et al. Among authors: prainsack b. J Med Ethics. 2020 Oct 6:medethics-2020-106530. doi: 10.1136/medethics-2020-106530. Online ahead of print. J Med Ethics. 2020. PMID: 33023977 Free article.
114 results