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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: morley ki. 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.
Genetic diagnosis of developmental disorders in the DDD study: a scalable analysis of genome-wide research data.
Wright CF, Fitzgerald TW, Jones WD, Clayton S, McRae JF, van Kogelenberg M, King DA, Ambridge K, Barrett DM, Bayzetinova T, Bevan AP, Bragin E, Chatzimichali EA, Gribble S, Jones P, Krishnappa N, Mason LE, Miller R, Morley KI, Parthiban V, Prigmore E, Rajan D, Sifrim A, Swaminathan GJ, Tivey AR, Middleton A, Parker M, Carter NP, Barrett JC, Hurles ME, FitzPatrick DR, Firth HV; DDD study. Wright CF, et al. Among authors: morley ki. Lancet. 2015 Apr 4;385(9975):1305-14. doi: 10.1016/S0140-6736(14)61705-0. Epub 2014 Dec 17. Lancet. 2015. PMID: 25529582 Free PMC article.
No expectation to share incidental findings in genomic research.
Middleton A, Morley KI, Bragin E, Firth HV, Hurles ME, Wright CF, Parker M; Deciphering Developmental Disorders Study. Middleton A, et al. Among authors: morley ki. Lancet. 2015 Apr 4;385(9975):1289-90. doi: 10.1016/S0140-6736(14)62119-X. Epub 2014 Dec 17. Lancet. 2015. PMID: 25529584 No abstract available.
Potential research participants support the return of raw sequence data.
Middleton A, Wright CF, Morley KI, Bragin E, Firth HV, Hurles ME, Parker M; DDD study. Middleton A, et al. Among authors: morley ki. J Med Genet. 2015 Aug;52(8):571-4. doi: 10.1136/jmedgenet-2015-103119. Epub 2015 May 20. J Med Genet. 2015. PMID: 25995218 Free PMC article.
'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: morley ki. 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: morley ki. 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.
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: morley ki. 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: morley ki. 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.
Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.
Milne R, Morley KI, Almarri MA, Anwer S, Atutornu J, Baranova EE, Bevan P, Cerezo M, Cong Y, Costa A, 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, 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, Wang N, West AV, Yoshizawa G, Middleton A. Milne R, et al. Among authors: morley ki. Genome Med. 2021 May 25;13(1):92. doi: 10.1186/s13073-021-00903-0. Genome Med. 2021. PMID: 34034801 Free PMC article.
88 results