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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. Hum Genomics. 2018 Feb 17;12(1):7. doi: 10.1186/s40246-018-0139-5. Hum Genomics. 2018. PMID: 29454384 Free PMC article. Review.
Genetic database software as medical devices.
Thorogood A, Touré SB, Ordish J, Hall A, Knoppers B. Thorogood A, et al. Hum Mutat. 2018 Nov;39(11):1702-1712. doi: 10.1002/humu.23621. Hum Mutat. 2018. PMID: 30311376 Free PMC article.
Public variant databases: liability?
Thorogood A, Cook-Deegan R, Knoppers BM. Thorogood A, et al. Genet Med. 2017 Jul;19(7):838-841. doi: 10.1038/gim.2016.189. Epub 2016 Dec 15. Genet Med. 2017. PMID: 27977006 Free PMC article.
Privacy-Preserving Linkage of Genomic and Clinical Data Sets.
Baker DB, Knoppers BM, Phillips M, van Enckevort D, Kaufmann P, Lochmuller H, Taruscio D. Baker DB, et al. IEEE/ACM Trans Comput Biol Bioinform. 2019 Jul-Aug;16(4):1342-1348. doi: 10.1109/TCBB.2018.2855125. Epub 2018 Jul 30. IEEE/ACM Trans Comput Biol Bioinform. 2019. PMID: 30059313
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. J Law Med Ethics. 2019 Mar;47(1):12-20. doi: 10.1177/1073110519840480. J Law Med Ethics. 2019. PMID: 30994067 Free PMC article.