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Participant choices for return of genomic results in the eMERGE Network.
Hoell C, Wynn J, Rasmussen LV, Marsolo K, Aufox SA, Chung WK, Connolly JJ, Freimuth RR, Kochan D, Hakonarson H, Harr M, Holm IA, Kullo IJ, Lammers PE, Leppig KA, Leslie ND, Myers MF, Sharp RR, Smith ME, Prows CA. Hoell C, et al. Genet Med. 2020 Nov;22(11):1821-1829. doi: 10.1038/s41436-020-0905-3. Epub 2020 Jul 16. Genet Med. 2020. PMID: 32669677 Free PMC article.
This study aims to describe the process of offering categorical and granular choices for results in a large research consortium. METHODS: Within the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network, several sites imple …
This study aims to describe the process of offering categorical and granular choices for results in a large research consortiu …
Return of genomic results to research participants: the floor, the ceiling, and the choices in between.
Jarvik GP, Amendola LM, Berg JS, Brothers K, Clayton EW, Chung W, Evans BJ, Evans JP, Fullerton SM, Gallego CJ, Garrison NA, Gray SW, Holm IA, Kullo IJ, Lehmann LS, McCarty C, Prows CA, Rehm HL, Sharp RR, Salama J, Sanderson S, Van Driest SL, Williams MS, Wolf SM, Wolf WA; eMERGE Act-ROR Committee and CERC Committee; CSER Act-ROR Working Group; Burke W. Jarvik GP, et al. Am J Hum Genet. 2014 Jun 5;94(6):818-26. doi: 10.1016/j.ajhg.2014.04.009. Epub 2014 May 8. Am J Hum Genet. 2014. PMID: 24814192 Free PMC article.
CSER and eMERGE committees have identified areas of consensus regarding the return of genomic results to research participants. In most circumstances, if results meet an actionability threshold for return and the research partic
CSER and eMERGE committees have identified areas of consensus regarding the return of genomic results to researc …
Returning negative results from large-scale genomic screening: Experiences from the eMERGE III network.
Finn KS, Lynch J, Aufox S, Bland HT, Chung W, Halverson C, Hebbring S, Hoell C, Holm I, Jarvik G, Kullo I, Leppig K, Myers M, Prows C, Rasouly HM, Singh R, Weisner G, Williams J, Wynn J, Smith M, Sharp R. Finn KS, et al. Am J Med Genet A. 2021 Feb;185(2):508-516. doi: 10.1002/ajmg.a.62002. Epub 2020 Dec 8. Am J Med Genet A. 2021. PMID: 36046768 Free PMC article.
As there are currently no best practices for returning negative genomic screening results, we drew on experiences across the electronic medical records and genomics (eMERGE) III Network to highlight the diversity of reporting methods empl …
As there are currently no best practices for returning negative genomic screening results, we drew on experiences acros …
Managing differential performance of polygenic risk scores across groups: Real-world experience of the eMERGE Network.
Lewis ACF, Chisholm RL, Connolly JJ, Esplin ED, Glessner J, Gordon A, Green RC, Hakonarson H, Harr M, Holm IA, Jarvik GP, Karlson E, Kenny EE, Kottyan L, Lennon N, Linder JE, Luo Y, Martin LJ, Perez E, Puckelwartz MJ, Rasmussen-Torvik LJ, Sabatello M, Sharp RR, Smoller JW, Sterling R, Terek S, Wei WQ, Fullerton SM. Lewis ACF, et al. Am J Hum Genet. 2024 Jun 6;111(6):999-1005. doi: 10.1016/j.ajhg.2024.04.005. Epub 2024 Apr 29. Am J Hum Genet. 2024. PMID: 38688278 Free PMC article. Review.
The social repercussions of how people are grouped in PRS research must be considered in communications with research participants, including return of results. Here, we outline the decisions faced and choices made by a large multi-site clinical implem …
The social repercussions of how people are grouped in PRS research must be considered in communications with research participants, i …