{"id":2493,"date":"2018-11-09T14:39:14","date_gmt":"2018-11-09T19:39:14","guid":{"rendered":"https:\/\/www.med.unc.edu\/elsi\/?page_id=2493"},"modified":"2019-10-11T12:45:15","modified_gmt":"2019-10-11T16:45:15","slug":"publications-most_recent","status":"publish","type":"page","link":"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/","title":{"rendered":"Most Recent"},"content":{"rendered":"<p>1: Roche MI, Griesemer I, Khan CM, Moore E, Lin FC, O&#8217;Daniel JM, Foreman AKM, Lee<br \/>\nK, Powell BC, Berg JS, Evans JP, Henderson GE, Rini C. Factors influencing<br \/>\nNCGENES research participants&#8217; requests for non-medically actionable secondary<br \/>\nfindings. Genet Med. 2018 Sep 21. doi: 10.1038\/s41436-018-0294-z. [Epub ahead of<br \/>\nprint] PubMed PMID: 30237575.<\/p>\n<p>2: Moore EG, Roche M, Rini C, Corty EW, Girnary Z, O&#8217;Daniel JM, Lin FC,<br \/>\nCorbie-Smith G, Evans JP, Henderson GE, Berg JS. Examining the Cascade of<br \/>\nParticipant Attrition in a Genomic Medicine Research Study: Barriers and<br \/>\nFacilitators to Achieving Diversity. Public Health Genomics. 2017;20(6):332-342.<br \/>\ndoi: 10.1159\/000490519. Epub 2018 Aug 7. PubMed PMID: 30086550; PubMed Central<br \/>\nPMCID: PMC6112240.<\/p>\n<p>3: Butterfield RM, Evans JP, Rini C, Kuczynski KJ, Waltz M, Cadigan RJ, Goddard<br \/>\nKAB, Muessig KR, Henderson GE. Returning negative results to individuals in a<br \/>\ngenomic screening program: lessons learned. Genet Med. 2018 Jun 6. doi:<br \/>\n10.1038\/s41436-018-0061-1. [Epub ahead of print] PubMed PMID: 29875426.<\/p>\n<p>4: Meagher KM, Juengst ET, Henderson GE. Grudging Trust and the Limits of<br \/>\nTrustworthy Biorepository Curation. Am J Bioeth. 2018 Apr;18(4):23-25. doi:<br \/>\n10.1080\/15265161.2018.1431329. PubMed PMID: 29621446; PubMed Central PMCID:<br \/>\nPMC6192541.<\/p>\n<p>5: Skinner D, Roche MI, Weck KE, Raspberry KA, Foreman AKM, Strande NT, Berg JS,<br \/>\nEvans JP, Henderson GE. &#8220;Possibly positive or certainly uncertain?&#8221;:<br \/>\nparticipants&#8217; responses to uncertain diagnostic results from exome sequencing.<br \/>\nGenet Med. 2018 Mar;20(3):313-319. doi: 10.1038\/gim.2017.135. Epub 2017 Oct 2.<br \/>\nPubMed PMID: 29593351; PubMed Central PMCID: PMC5880300.<\/p>\n<p>6: Rini C, Khan CM, Moore E, Roche MI, Evans JP, Berg JS, Powell BC, Corbie-Smith<br \/>\nG, Foreman AKM, Griesemer I, Lee K, O&#8217;Daniel JM, Henderson GE. The who, what, and<br \/>\nwhy of research participants&#8217; intentions to request a broad range of secondary<br \/>\nfindings in a diagnostic genomic sequencing study. Genet Med. 2018<br \/>\nJul;20(7):760-769. doi: 10.1038\/gim.2017.176. Epub 2017 Oct 26. PubMed PMID:<br \/>\n29261173; PubMed Central PMCID: PMC5920790.<\/p>\n<p>7: Waltz M, Cadigan RJ, Prince AER, Skinner D, Henderson GE. Age and perceived<br \/>\nrisks and benefits of preventive genomic screening. Genet Med. 2018<br \/>\nSep;20(9):1038-1044. doi: 10.1038\/gim.2017.206. Epub 2017 Dec 7. PubMed PMID:<br \/>\n29215654; PubMed Central PMCID: PMC5991986.<\/p>\n<p>8: Cadigan RJ, Butterfield R, Rini C, Waltz M, Kuczynski KJ, Muessig K, Goddard<br \/>\nKAB, Henderson GE. Online Education and e-Consent for GeneScreen, a Preventive<br \/>\nGenomic Screening Study. Public Health Genomics. 2017;20(4):235-246. doi:<br \/>\n10.1159\/000481359. Epub 2017 Oct 26. PubMed PMID: 29069655; PubMed Central PMCID:<br \/>\nPMC5698149.<\/p>\n<p>9: Wolf SM, Amendola LM, Berg JS, Chung WK, Clayton EW, Green RC, Harris-Wai J,<br \/>\nHenderson GE, Jarvik GP, Koenig BA, Lehmann LS, McGuire AL, O&#8217;Rourke P, Somkin C,<br \/>\nWilfond BS, Burke W. Navigating the research-clinical interface in genomic<br \/>\nmedicine: analysis from the CSER Consortium. Genet Med. 2018 Apr;20(5):545-553.<br \/>\ndoi: 10.1038\/gim.2017.137. Epub 2017 Aug 31. PubMed PMID: 28858330; PubMed<br \/>\nCentral PMCID: PMC5832495.<\/p>\n<p>10: Prince AE, Cadigan RJ, Henderson GE, Evans JP, Adams M, Coker-Schwimmer E,<br \/>\nPenn DC, Van Riper M, Corbie-Smith G, Jonas DE. Is there evidence that we should<br \/>\nscreen the general population for Lynch syndrome with genetic testing? A<br \/>\nsystematic review. Pharmgenomics Pers Med. 2017 Feb 20;10:49-60. doi:<br \/>\n10.2147\/PGPM.S123808. eCollection 2017. Review. PubMed PMID: 28260941; PubMed<br \/>\nCentral PMCID: PMC5325104.<\/p>\n<p>11: Cadigan RJ, Edwards TP, Lassiter D, Davis AM, Henderson GE.<br \/>\n&#8220;Forward-Thinking&#8221; in U.S. Biobanking. Genet Test Mol Biomarkers. 2017<br \/>\nMar;21(3):148-154. doi: 10.1089\/gtmb.2016.0393. Epub 2017 Jan 24. PubMed PMID:<br \/>\n28118036; PubMed Central PMCID: PMC5367905.<\/p>\n<p>12: Cohn EG, Henderson GE, Appelbaum PS. Distributive justice, diversity, and<br \/>\ninclusion in precision medicine: what will success look like? Genet Med. 2017<br \/>\nFeb;19(2):157-159. doi: 10.1038\/gim.2016.92. Epub 2016 Aug 4. Erratum in: Genet<br \/>\nMed. 2016 Nov;18(11):1166. PubMed PMID: 27490116; PubMed Central PMCID:<br \/>\nPMC5291806.<\/p>\n<p>13: Tan N, Amendola LM, O&#8217;Daniel JM, Burt A, Horike-Pyne MJ, Boshe L, Henderson<br \/>\nGE, Rini C, Roche MI, Hisama FM, Burke W, Wilfond B, Jarvik GP. Is &#8220;incidental<br \/>\nfinding&#8221; the best term?: a study of patients&#8217; preferences. Genet Med. 2017<br \/>\nFeb;19(2):176-181. doi: 10.1038\/gim.2016.96. Epub 2016 Aug 4. PubMed PMID:<br \/>\n27490114; PubMed Central PMCID: PMC5291803.<\/p>\n<p>14: Green RC, Goddard KA, Jarvik GP, Amendola LM, Appelbaum PS, Berg JS,<br \/>\nBernhardt BA, Biesecker LG, Biswas S, Blout CL, Bowling KM, Brothers KB, Burke W,<br \/>\nCaga-Anan CF, Chinnaiyan AM, Chung WK, Clayton EW, Cooper GM, East K, Evans JP,<br \/>\nFullerton SM, Garraway LA, Garrett JR, Gray SW, Henderson GE, Hindorff LA, Holm<br \/>\nIA, Lewis MH, Hutter CM, Janne PA, Joffe S, Kaufman D, Knoppers BM, Koenig BA,<br \/>\nKrantz ID, Manolio TA, McCullough L, McEwen J, McGuire A, Muzny D, Myers RM,<br \/>\nNickerson DA, Ou J, Parsons DW, Petersen GM, Plon SE, Rehm HL, Roberts JS,<br \/>\nRobinson D, Salama JS, Scollon S, Sharp RR, Shirts B, Spinner NB, Tabor HK,<br \/>\nTarczy-Hornoch P, Veenstra DL, Wagle N, Weck K, Wilfond BS, Wilhelmsen K, Wolf<br \/>\nSM, Wynn J, Yu JH; CSER Consortium. Clinical Sequencing Exploratory Research<br \/>\nConsortium: Accelerating Evidence-Based Practice of Genomic Medicine. Am J Hum<br \/>\nGenet. 2016 Jul 7;99(1):246. doi: 10.1016\/j.ajhg.2016.06.002. PubMed PMID:<br \/>\n27392080; PubMed Central PMCID: PMC5005464.<\/p>\n<p>15: Adams MC, Evans JP, Henderson GE, Berg JS. The promise and peril of genomic<br \/>\nscreening in the general population. Genet Med. 2016 Jun;18(6):593-9. doi:<br \/>\n10.1038\/gim.2015.136. Epub 2015 Nov 5. PubMed PMID: 26540154; PubMed Central<br \/>\nPMCID: PMC4860183.<\/p>\n<p>16: Cadigan RJ, Nelson DK, Henderson GE, Nelson AG, Davis AM. Public Comments on<br \/>\nProposed Regulatory Reforms That Would Impact Biospecimen Research: The Good, the<br \/>\nBad, and the Puzzling. IRB. 2015 Sep-Oct;37(5):1-10. PubMed PMID: 26523321.<\/p>\n<p>17: Henderson GE. With great (participant) rights comes great (researcher)<br \/>\nresponsibility. Genet Med. 2016 Feb;18(2):124-5. doi: 10.1038\/gim.2015.67. Epub<br \/>\n2015 May 7. PubMed PMID: 25950735.<\/p>\n<p>18: Khan CM, Rini C, Bernhardt BA, Roberts JS, Christensen KD, Evans JP, Brothers<br \/>\nKB, Roche MI, Berg JS, Henderson GE. Erratum to: How can psychological science<br \/>\ninform research about genetic counseling for clinical genomic sequencing? J Genet<br \/>\nCouns. 2015 Apr;24(2):372. doi: 10.1007\/s10897-014-9814-4. PubMed PMID: 25539761.<\/p>\n<p>19: Khan CM, Rini C, Bernhardt BA, Roberts JS, Christensen KD, Evans JP, Brothers<br \/>\nKB, Roche MI, Berg JS, Henderson GE. How can psychological science inform<br \/>\nresearch about genetic counseling for clinical genomic sequencing? J Genet Couns.<br \/>\n2015 Apr;24(2):193-204. doi: 10.1007\/s10897-014-9804-6. Epub 2014 Dec 9. Erratum<br \/>\nin: J Genet Couns. 2015 Apr;24(2):372. PubMed PMID: 25488723; PubMed Central<br \/>\nPMCID: PMC4777349.<\/p>\n<p>20: Cadigan RJ, Lassiter D, Haldeman K, Conlon I, Reavely E, Henderson GE.<br \/>\nNeglected ethical issues in biobank management: Results from a U.S. study. Life<br \/>\nSci Soc Policy. 2013 Dec 1;9(1):1. PubMed PMID: 25401081; PubMed Central PMCID:<br \/>\nPMC4228790.<\/p>\n<p>21: Henderson GE, Wolf SM, Kuczynski KJ, Joffe S, Sharp RR, Parsons DW, Knoppers<br \/>\nBM, Yu JH, Appelbaum PS. The challenge of informed consent and return of results<br \/>\nin translational genomics: empirical analysis and recommendations. J Law Med<br \/>\nEthics. 2014 Fall;42(3):344-55. doi: 10.1111\/jlme.12151. PubMed PMID: 25264092;<br \/>\nPubMed Central PMCID: PMC4262925.<\/p>\n<p>22: Edwards T, Cadigan RJ, Evans JP, Henderson GE. Biobanks containing clinical<br \/>\nspecimens: defining characteristics, policies, and practices. Clin Biochem. 2014<br \/>\nMar;47(4-5):245-51. doi: 10.1016\/j.clinbiochem.2013.11.023. Epub 2013 Dec 15.<br \/>\nPubMed PMID: 24345347; PubMed Central PMCID: PMC3959281.<\/p>\n<p>23: Henderson GE, Edwards TP, Cadigan RJ, Davis AM, Zimmer C, Conlon I, Weiner<br \/>\nBJ. Stewardship practices of U.S. biobanks. Sci Transl Med. 2013 Dec<br \/>\n11;5(215):215cm7. doi: 10.1126\/scitranslmed.3007362. PubMed PMID: 24337477;<br \/>\nPubMed Central PMCID: PMC4185188.<\/p>\n<p>24: Burke W, Antommaria AH, Bennett R, Botkin J, Clayton EW, Henderson GE, Holm<br \/>\nIA, Jarvik GP, Khoury MJ, Knoppers BM, Press NA, Ross LF, Rothstein MA, Saal H,<br \/>\nUhlmann WR, Wilfond B, Wolf SM, Zimmern R. Recommendations for returning genomic<br \/>\nincidental findings? We need to talk! Genet Med. 2013 Nov;15(11):854-9. doi:<br \/>\n10.1038\/gim.2013.113. Epub 2013 Aug 1. Review. PubMed PMID: 23907645; PubMed<br \/>\nCentral PMCID: PMC3832423.<\/p>\n<p>25: Henderson GE, Cadigan RJ, Edwards TP, Conlon I, Nelson AG, Evans JP, Davis<br \/>\nAM, Zimmer C, Weiner BJ. Characterizing biobank organizations in the U.S.:<br \/>\nresults from a national survey. Genome Med. 2013 Jan 25;5(1):3. doi:<br \/>\n10.1186\/gm407. eCollection 2013. PubMed PMID: 23351549; PubMed Central PMCID:<br \/>\nPMC3706795.<\/p>\n<p>26: Henderson GE, Juengst ET, King NM, Kuczynski K, Michie M. What research<br \/>\nethics should learn from genomics and society research: lessons from the ELSI<br \/>\nCongress of 2011. J Law Med Ethics. 2012 Winter;40(4):1008-24. doi:<br \/>\n10.1111\/j.1748-720X.2012.00728.x. PubMed PMID: 23289702; PubMed Central PMCID:<br \/>\nPMC4103651.<\/p>\n<p>27: Churchill LR, King NM, Henderson GE. Why we should continue to worry about<br \/>\nthe therapeutic misconception. J Clin Ethics. 2013 Winter;24(4):381-6. PubMed<br \/>\nPMID: 24597426.<\/p>\n<p>28: Boyer GJ, Whipple W, Cadigan RJ, Henderson GE. Biobanks in the United States:<br \/>\nhow to identify an undefined and rapidly evolving population. Biopreserv Biobank.<br \/>\n2012 Dec;10(6):511-7. doi: 10.1089\/bio.2012.0034. PubMed PMID: 24845137; PubMed<br \/>\nCentral PMCID: PMC4076972.<\/p>\n<p>29: Beskow LM, Namey EE, Cadigan RJ, Brazg T, Crouch J, Henderson GE, Michie M,<br \/>\nNelson DK, Tabor HK, Wilfond BS. Research participants&#8217; perspectives on<br \/>\ngenotype-driven research recruitment. J Empir Res Hum Res Ethics. 2011<br \/>\nDec;6(4):3-20. doi: 10.1525\/jer.2011.6.4.3. PubMed PMID: 22228056; PubMed Central<br \/>\nPMCID: PMC3395316.<\/p>\n<p>30: Henderson GE. Is informed consent broken? Am J Med Sci. 2011<br \/>\nOct;342(4):267-72. doi: 10.1097\/MAJ.0b013e31822a6c47. Review. PubMed PMID:<br \/>\n21817873.<\/p>\n<p>31: Henderson GE, Churchill LR, Davis AM, Easter MM, Grady C, Joffe S, Kass N,<br \/>\nKing NM, Lidz CW, Miller FG, Nelson DK, Peppercorn J, Rothschild BB, Sankar P,<br \/>\nWilfond BS, Zimmer CR. Clinical trials and medical care: defining the therapeutic<br \/>\nmisconception. PLoS Med. 2007 Nov 27;4(11):e324. PubMed PMID: 18044980; PubMed<br \/>\nCentral PMCID: PMC2082641.<\/p>\n<p>32: Rivera SM, Brothers KB, Cadigan RJ, Harrell HL, Rothstein MA, Sharp RR,<br \/>\nGoldenberg AJ. Modernizing Research Regulations Is Not Enough: It&#8217;s Time to Think<br \/>\nOutside the Regulatory Box. Am J Bioeth. 2017 Jul;17(7):1-3. doi:<br \/>\n10.1080\/15265161.2017.1328899. PubMed PMID: 28661748; PubMed Central PMCID:<br \/>\nPMC6089353.<\/p>\n<p>33: L\u00e1zaro-Mu\u00f1oz G, Conley JM, Davis AM, Prince AE, Cadigan RJ. Which Results to<br \/>\nReturn: Subjective Judgments in Selecting Medically Actionable Genes. Genet Test<br \/>\nMol Biomarkers. 2017 Mar;21(3):184-194. doi: 10.1089\/gtmb.2016.0397. Epub 2017<br \/>\nFeb 1. PubMed PMID: 28146641; PubMed Central PMCID: PMC5367906.<\/p>\n<p>34: Prince AE, Conley JM, Davis AM, L\u00e1zaro-Mu\u00f1oz G, Cadigan RJ. Automatic<br \/>\nPlacement of Genomic Research Results in Medical Records: Do Researchers Have a<br \/>\nDuty? Should Participants Have a Choice? J Law Med Ethics. 2015<br \/>\nWinter;43(4):827-42. doi: 10.1111\/jlme.12323. PubMed PMID: 26711421; PubMed<br \/>\nCentral PMCID: PMC4780406.<\/p>\n<p>35: Conley JM, L\u00e1zaro-Mu\u00f1oz G, Prince AE, Davis AM, Cadigan RJ. Scientific Social<br \/>\nResponsibility: Lessons From the Corporate Social Responsibility Movement. Am J<br \/>\nBioeth. 2015;15(12):64-6. doi: 10.1080\/15265161.2015.1103812. PubMed PMID:<br \/>\n26632370; PubMed Central PMCID: PMC4751582.<\/p>\n<p>36: Long MD, Cadigan RJ, Cook SF, Haldeman K, Kuczynski K, Sandler RS, Martin CF,<br \/>\nChen W, Kappelman MD. Perceptions of patients with inflammatory bowel diseases on<br \/>\nbiobanking. Inflamm Bowel Dis. 2015 Jan;21(1):132-8. doi:<br \/>\n10.1097\/MIB.0000000000000263. PubMed PMID: 25489961; PubMed Central PMCID:<br \/>\nPMC4573563.<\/p>\n<p>37: Isler MR, Sutton K, Cadigan RJ, Corbie-Smith G. Community perceptions of<br \/>\ngenomic research: implications for addressing health disparities. N C Med J. 2013<br \/>\nNov-Dec;74(6):470-6. PubMed PMID: 24316767.<\/p>\n<p>38: Conley JM, Mitchell R, Cadigan RJ, Davis AM, Dobson AW, Gladden RQ. A trade<br \/>\nsecret model for genomic biobanking. J Law Med Ethics. 2012 Fall;40(3):612-29.<br \/>\ndoi: 10.1111\/j.1748-720X.2012.00694.x. PubMed PMID: 23061589; PubMed Central<br \/>\nPMCID: PMC3476050.<\/p>\n<p>39: Michie M, Cadigan RJ, Henderson G, Beskow LM. Am I a control?:<br \/>\nGenotype-driven research recruitment and self-understandings of study<br \/>\nparticipants. Genet Med. 2012 Dec;14(12):983-9. doi: 10.1038\/gim.2012.88. Epub<br \/>\n2012 Aug 30. PubMed PMID: 22935717; PubMed Central PMCID: PMC3578310.<\/p>\n<p>40: Cadigan RJ, Michie M, Henderson G, Davis AM, Beskow LM. The meaning of<br \/>\ngenetic research results: reflections from individuals with and without a known<br \/>\ngenetic disorder. J Empir Res Hum Res Ethics. 2011 Dec;6(4):30-40. doi:<br \/>\n10.1525\/jer.2011.6.4.30. PubMed PMID: 22228058; PubMed Central PMCID: PMC3386306.<\/p>\n<p>41: Mitchell R, Conley JM, Davis AM, Cadigan RJ, Dobson AW, Gladden RQ. Genomics.<br \/>\nGenomics, biobanks, and the trade-secret model. Science. 2011 Apr<br \/>\n15;332(6027):309-10. doi: 10.1126\/science.1199554. PubMed PMID: 21493846.<\/p>\n<p>42: Juengst ET, McGowan ML. Why Does the Shift from &#8220;Personalized Medicine&#8221; to<br \/>\n&#8220;Precision Health&#8221; and &#8220;Wellness Genomics&#8221; Matter? AMA J Ethics. 2018 Sep<br \/>\n1;20(9):E881-890. doi: 10.1001\/amajethics.2018.881. PubMed PMID: 30242820.<\/p>\n<p>43: Johnston J, Juengst E. Are Parents Really Obligated to Learn as Much as<br \/>\nPossible about Their Children&#8217;s Genomes? Hastings Cent Rep. 2018 Jul;48 Suppl<br \/>\n2:S14-S15. doi: 10.1002\/hast.877. PubMed PMID: 30133729.<\/p>\n<p>44: Kaye J, Terry SF, Juengst E, Coy S, Harris JR, Chalmers D, Dove ES,<br \/>\nBudin-Lj\u00f8sne I, Adebamowo C, Ogbe E, Bezuidenhout L, Morrison M, Minion JT,<br \/>\nMurtagh MJ, Minari J, Teare H, Isasi R, Kato K, Rial-Sebbag E, Marshall P, Koenig<br \/>\nB, Cambon-Thomsen A. Including all voices in international data-sharing<br \/>\ngovernance. Hum Genomics. 2018 Mar 7;12(1):13. doi: 10.1186\/s40246-018-0143-9.<br \/>\nPubMed PMID: 29514717; PubMed Central PMCID: PMC5842530.<\/p>\n<p>45: Juengst ET. Crowdsourcing the Moral Limits of Human Gene Editing? Hastings<br \/>\nCent Rep. 2017 May;47(3):15-23. doi: 10.1002\/hast.701. PubMed PMID: 28543411.<\/p>\n<p>46: Meagher KM, McGowan ML, Settersten RA Jr, Fishman JR, Juengst ET. Precisely<br \/>\nWhere Are We Going? Charting the New Terrain of Precision Prevention. Annu Rev<br \/>\nGenomics Hum Genet. 2017 Aug 31;18:369-387. doi:<br \/>\n10.1146\/annurev-genom-091416-035222. Epub 2017 Apr 24. Review. PubMed PMID:<br \/>\n28441061; PubMed Central PMCID: PMC6203331.<\/p>\n<p>47: Juengst E, McGowan ML, Fishman JR, Settersten RA Jr. From &#8220;Personalized&#8221; to<br \/>\n&#8220;Precision&#8221; Medicine: The Ethical and Social Implications of Rhetorical Reform in<br \/>\nGenomic Medicine. Hastings Cent Rep. 2016 Sep;46(5):21-33. doi: 10.1002\/hast.614.<br \/>\nPubMed PMID: 27649826; PubMed Central PMCID: PMC5153661.<\/p>\n<p>48: Woolley JP, McGowan ML, Teare HJ, Coathup V, Fishman JR, Settersten RA Jr,<br \/>\nSterckx S, Kaye J, Juengst ET. Citizen science or scientific citizenship?<br \/>\nDisentangling the uses of public engagement rhetoric in national research<br \/>\ninitiatives. BMC Med Ethics. 2016 Jun 4;17(1):33. doi: 10.1186\/s12910-016-0117-1.<br \/>\nPubMed PMID: 27260081; PubMed Central PMCID: PMC4893207.<\/p>\n<p>49: L\u00e1zaro-Mu\u00f1oz G, Conley JM, Davis AM, Van Riper M, Walker RL, Juengst ET.<br \/>\nResponse to Open Peer Commentaries on &#8220;Looking for Trouble: Preventive Genomic<br \/>\nSequencing in the General Population and the Role of Patient Choice&#8221;. Am J<br \/>\nBioeth. 2015;15(12):W6-9. doi: 10.1080\/15265161.2015.1096069. PubMed PMID:<br \/>\n26632375.<\/p>\n<p>50: L\u00e1zaro-Mu\u00f1oz G, Juengst ET. CHALLENGES FOR IMPLEMENTING A PTSD PREVENTIVE<br \/>\nGENOMIC SEQUENCING PROGRAM IN THE U.S. MILITARY. Case West Reserve J Int Law.<br \/>\n2015 Spring;47(1):87-113. PubMed PMID: 26401056; PubMed Central PMCID:<br \/>\nPMC4577019.<\/p>\n<p>51: Berg JS, Foreman AK, O&#8217;Daniel JM, Booker JK, Boshe L, Carey T, Crooks KR,<br \/>\nJensen BC, Juengst ET, Lee K, Nelson DK, Powell BC, Powell CM, Roche MI, Skrzynia<br \/>\nC, Strande NT, Weck KE, Wilhelmsen KC, Evans JP. A semiquantitative metric for<br \/>\nevaluating clinical actionability of incidental or secondary findings from<br \/>\ngenome-scale sequencing. Genet Med. 2016 May;18(5):467-75. doi:<br \/>\n10.1038\/gim.2015.104. Epub 2015 Aug 13. PubMed PMID: 26270767; PubMed Central<br \/>\nPMCID: PMC4752935.<\/p>\n<p>52: L\u00e1zaro-Mu\u00f1oz G, Conley JM, Davis AM, Van Riper M, Walker RL, Juengst ET.<br \/>\nLooking for Trouble: Preventive Genomic Sequencing in the General Population and<br \/>\nthe Role of Patient Choice. Am J Bioeth. 2015;15(7):3-14. doi:<br \/>\n10.1080\/15265161.2015.1039721. PubMed PMID: 26147254; PubMed Central PMCID:<br \/>\nPMC4493927.<\/p>\n<p>53: McGowan ML, Fishman JR, Settersten RA Jr, Lambrix MA, Juengst ET. Gatekeepers<br \/>\nor intermediaries? The role of clinicians in commercial genomic testing. PLoS<br \/>\nOne. 2014 Sep 26;9(9):e108484. doi: 10.1371\/journal.pone.0108484. eCollection<br \/>\n2014. PubMed PMID: 25259512; PubMed Central PMCID: PMC4178171.<\/p>\n<p>54: Juengst ET, Fishman JR, McGowan ML, Settersten RA Jr. Serving epigenetics<br \/>\nbefore its time. Trends Genet. 2014 Oct;30(10):427-9. doi:<br \/>\n10.1016\/j.tig.2014.08.001. PubMed PMID: 25242336.<\/p>\n<p>55: Walker RL, Juengst ET, Whipple W, Davis AM. Genomic research with the newly<br \/>\ndead: a crossroads for ethics and policy. J Law Med Ethics. 2014<br \/>\nSummer;42(2):220-31. doi: 10.1111\/jlme.12137. PubMed PMID: 25040385; PubMed<br \/>\nCentral PMCID: PMC4378691.<\/p>\n<p>56: Burke W, Appelbaum P, Dame L, Marshall P, Press N, Pyeritz R, Sharp R,<br \/>\nJuengst E. The translational potential of research on the ethical, legal, and<br \/>\nsocial implications of genomics. Genet Med. 2015 Jan;17(1):12-20. doi:<br \/>\n10.1038\/gim.2014.74. Epub 2014 Jun 19. Review. PubMed PMID: 24946153; PubMed<br \/>\nCentral PMCID: PMC4272334.<\/p>\n<p>57: Choudhury S, Fishman JR, McGowan ML, Juengst ET. Big data, open science and<br \/>\nthe brain: lessons learned from genomics. Front Hum Neurosci. 2014 May 16;8:239.<br \/>\ndoi: 10.3389\/fnhum.2014.00239. eCollection 2014. Review. PubMed PMID: 24904347;<br \/>\nPubMed Central PMCID: PMC4032989.<\/p>\n<p>58: Juengst ET. TMI! ethical challenges in managing and using large patient data<br \/>\nsets. N C Med J. 2014 May-Jun;75(3):214-7. PubMed PMID: 24830499.<\/p>\n<p>59: McGowan ML, Settersten RA Jr, Juengst ET, Fishman JR. Integrating genomics<br \/>\ninto clinical oncology: ethical and social challenges from proponents of<br \/>\npersonalized medicine. Urol Oncol. 2014 Feb;32(2):187-92. doi:<br \/>\n10.1016\/j.urolonc.2013.10.009. PubMed PMID: 24445286; PubMed Central PMCID:<br \/>\nPMC3900115.<\/p>\n<p>60: Holm IA, Savage SK, Green RC, Juengst E, McGuire A, Kornetsky S, Brewster SJ,<br \/>\nJoffe S, Taylor P. Guidelines for return of research results from pediatric<br \/>\ngenomic studies: deliberations of the Boston Children&#8217;s Hospital Gene Partnership<br \/>\nInformed Cohort Oversight Board. Genet Med. 2014 Jul;16(7):547-52. doi:<br \/>\n10.1038\/gim.2013.190. Epub 2014 Jan 9. PubMed PMID: 24406460.<\/p>\n<p>61: Juengst ET, Settersten RA Jr, Fishman JR, McGowan ML. After the revolution?<br \/>\nEthical and social challenges in &#8216;personalized genomic medicine&#8217;. Per Med. 2012<br \/>\nJun 1;9(4):429-439. PubMed PMID: 23662108; PubMed Central PMCID: PMC3646379.<\/p>\n<p>62: Juengst ET, Flatt MA, Settersten RA Jr. Personalized genomic medicine and the<br \/>\nrhetoric of empowerment. Hastings Cent Rep. 2012 Sep-Oct;42(5):34-40. doi:<br \/>\n10.1002\/hast.65. PubMed PMID: 22976411; PubMed Central PMCID: PMC3641662.<\/p>\n<p>63: Kaye J, Meslin EM, Knoppers BM, Juengst ET, Desch\u00eanes M, Cambon-Thomsen A,<br \/>\nChalmers D, De Vries J, Edwards K, Hoppe N, Kent A, Adebamowo C, Marshall P, Kato<br \/>\nK. Research priorities. ELSI 2.0 for genomics and society. Science. 2012 May<br \/>\n11;336(6082):673-4. doi: 10.1126\/science.1218015. PubMed PMID: 22582247; PubMed<br \/>\nCentral PMCID: PMC4151290.<\/p>\n<p>64: Dressler LG, Smolek S, Ponsaran R, Markey JM, Starks H, Gerson N, Lewis S,<br \/>\nPress N, Juengst E, Wiesner GL; GRRIP Consortium. IRB perspectives on the return<br \/>\nof individual results from genomic research. Genet Med. 2012 Feb;14(2):215-22.<br \/>\ndoi: 10.1038\/gim.2011.10. Epub 2012 Jan 5. PubMed PMID: 22241094; PubMed Central<br \/>\nPMCID: PMC3493147.<\/p>\n<p>65: Mehlman MJ, Berg JW, Juengst ET, Kodish E. Ethical and legal issues in<br \/>\nenhancement research on human subjects. Camb Q Healthc Ethics. 2011<br \/>\nJan;20(1):30-45. doi: 10.1017\/S0963180110000605. PubMed PMID: 21223608.<\/p>\n<p>66: Coors ME, Glover JJ, Juengst ET, Sikela JM. The ethics of using transgenic<br \/>\nnon-human primates to study what makes us human. Nat Rev Genet. 2010<br \/>\nSep;11(9):658-62. doi: 10.1038\/nrg2864. Review. PubMed PMID: 20717156; PubMed<br \/>\nCentral PMCID: PMC2995325.<\/p>\n<p>67: Callier SL, Huss J, Juengst ET. GINA and preemployment criminal background<br \/>\nchecks. Hastings Cent Rep. 2010 Jan-Feb;40(1):15-9. PubMed PMID: 20169652; PubMed<br \/>\nCentral PMCID: PMC3380532.<\/p>\n<p>68: Gaines AD, Juengst ET. Origin myths in Bioethics: constructing sources,<br \/>\nmotives and reason in Bioethic(s). Cult Med Psychiatry. 2008 Sep;32(3):303-27.<br \/>\ndoi: 10.1007\/s11013-008-9105-3. PubMed PMID: 18574678.<\/p>\n<p>69: Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, Danilczyk U, Diaz<br \/>\nCM, Fryer-Edwards K, Green SK, Hodosh MA, Juengst ET, Kaye J, Kedes L, Knoppers<br \/>\nBM, Lemmens T, Meslin EM, Murphy J, Nussbaum RL, Otlowski M, Pullman D, Ray PN,<br \/>\nSugarman J, Timmons M. Research ethics recommendations for whole-genome research:<br \/>\nconsensus statement. PLoS Biol. 2008 Mar 25;6(3):e73. doi:<br \/>\n10.1371\/journal.pbio.0060073. PubMed PMID: 18366258; PubMed Central PMCID:<br \/>\nPMC2270329.<\/p>\n<p>70: Beskow LM, Fullerton SM, Namey EE, Nelson DK, Davis AM, Wilfond BS.<br \/>\nRecommendations for ethical approaches to genotype-driven research recruitment.<br \/>\nHum Genet. 2012 Sep;131(9):1423-31. doi: 10.1007\/s00439-012-1177-z. Epub 2012 May<br \/>\n24. PubMed PMID: 22622788; PubMed Central PMCID: PMC3686635.<\/p>\n<p>71: Bailey DB Jr, Skinner D, Davis AM, Whitmarsh I, Powell C. Ethical, legal, and<br \/>\nsocial concerns about expanded newborn screening: fragile X syndrome as a<br \/>\nprototype for emerging issues. Pediatrics. 2008 Mar;121(3):e693-704. doi:<br \/>\n10.1542\/peds.2007-0820. Review. PubMed PMID: 18310190.<\/p>\n<p>72: Whitmarsh I, Davis AM, Skinner D, Bailey DB Jr. A place for genetic<br \/>\nuncertainty: parents valuing an unknown in the meaning of disease. Soc Sci Med.<br \/>\n2007 Sep;65(6):1082-93. Epub 2007 Jun 11. PubMed PMID: 17561324; PubMed Central<br \/>\nPMCID: PMC2267724.<\/p>\n<p>73: Vora NL, Powell B, Brandt A, Strande N, Hardisty E, Gilmore K, Foreman AKM,<br \/>\nWilhelmsen K, Bizon C, Reilly J, Owen P, Powell CM, Skinner D, Rini C, Lyerly AD,<br \/>\nBoggess KA, Weck K, Berg JS, Evans JP. Prenatal exome sequencing in anomalous<br \/>\nfetuses: new opportunities and challenges. Genet Med. 2017 Nov;19(11):1207-1216.<br \/>\ndoi: 10.1038\/gim.2017.33. Epub 2017 May 18. PubMed PMID: 28518170; PubMed Central<br \/>\nPMCID: PMC5675748.<\/p>\n<p>74: Skinner D, Raspberry KA, King M. The nuanced negative: Meanings of a negative<br \/>\ndiagnostic result in clinical exome sequencing. Sociol Health Illn. 2016<br \/>\nNov;38(8):1303-1317. doi: 10.1111\/1467-9566.12460. Epub 2016 Aug 19. PubMed PMID:<br \/>\n27538589; PubMed Central PMCID: PMC5089912.<\/p>\n<p>75: Bernhardt BA, Roche MI, Perry DL, Scollon SR, Tomlinson AN, Skinner D.<br \/>\nExperiences with obtaining informed consent for genomic sequencing. Am J Med<br \/>\nGenet A. 2015 Nov;167A(11):2635-46. doi: 10.1002\/ajmg.a.37256. Epub 2015 Jul 21.<br \/>\nPubMed PMID: 26198374; PubMed Central PMCID: PMC4980577.<\/p>\n<p>76: Tomlinson AN, Skinner D, Perry DL, Scollon SR, Roche MI, Bernhardt BA. &#8220;Not<br \/>\nTied Up Neatly with a Bow&#8221;: Professionals&#8217; Challenging Cases in Informed Consent<br \/>\nfor Genomic Sequencing. J Genet Couns. 2016 Feb;25(1):62-72. doi:<br \/>\n10.1007\/s10897-015-9842-8. Epub 2015 Apr 26. PubMed PMID: 25911622; PubMed<br \/>\nCentral PMCID: PMC4621265.<\/p>\n<p>77: Haase R, Michie M, Skinner D. Flexible positions, managed hopes: the<br \/>\npromissory bioeconomy of a whole genome sequencing cancer study. Soc Sci Med.<br \/>\n2015 Apr;130:146-53. doi: 10.1016\/j.socscimed.2015.02.016. Epub 2015 Feb 13.<br \/>\nPubMed PMID: 25697637; PubMed Central PMCID: PMC4363274.<\/p>\n<p>78: Abrams L, Cronister A, Brown WT, Tassone F, Sherman SL, Finucane B,<br \/>\nMcConkie-Rosell A, Hagerman R, Kaufmann WE, Picker J, Coffey S, Skinner D,<br \/>\nJohnson V, Miller R, Berry-Kravis E. Newborn, carrier, and early childhood<br \/>\nscreening recommendations for fragile X. Pediatrics. 2012 Dec;130(6):1126-35.<br \/>\ndoi: 10.1542\/peds.2012-0693. Epub 2012 Nov 5. Review. PubMed PMID: 23129072.<\/p>\n<p>79: Skinner D, Choudhury S, Sideris J, Guarda S, Buansi A, Roche M, Powell C,<br \/>\nBailey DB Jr. Parents&#8217; decisions to screen newborns for FMR1 gene expansions in a<br \/>\npilot research project. Pediatrics. 2011 Jun;127(6):e1455-63. doi:<br \/>\n10.1542\/peds.2010-3078. Epub 2011 May 29. PubMed PMID: 21624881; PubMed Central<br \/>\nPMCID: PMC3103273.<\/p>\n<p>80: Raspberry KA, Skinner D. Negotiating desires and options: how mothers who<br \/>\ncarry the fragile X gene experience reproductive decisions. Soc Sci Med. 2011<br \/>\nMar;72(6):992-8. doi: 10.1016\/j.socscimed.2011.01.010. Epub 2011 Feb 3. PubMed<br \/>\nPMID: 21333433; PubMed Central PMCID: PMC3070848.<\/p>\n<p>81: Raspberry K, Skinner D. Enacting genetic responsibility: experiences of<br \/>\nmothers who carry the fragile X gene. Sociol Health Illn. 2011 Mar;33(3):420-33.<br \/>\ndoi: 10.1111\/j.1467-9566.2010.01289.x. Epub 2010 Nov 5. PubMed PMID: 21054442;<br \/>\nPubMed Central PMCID: PMC3057279.<\/p>\n<p>82: Bailey DB Jr, Skinner D, Roche MI, Powell C. Emerging dilemmas in newborn<br \/>\nscreening. Virtual Mentor. 2009 Sep 1;11(9):709-13. doi:<br \/>\n10.1001\/virtualmentor.2009.11.9.pfor2-0909. PubMed PMID: 23199468.<\/p>\n<p>83: Roche MI, Skinner D. How parents search, interpret, and evaluate genetic<br \/>\ninformation obtained from the internet. J Genet Couns. 2009 Apr;18(2):119-29.<br \/>\ndoi: 10.1007\/s10897-008-9198-4. Epub 2008 Oct 21. PubMed PMID: 18937062; PubMed<br \/>\nCentral PMCID: PMC3114943.<\/p>\n<p>84: Bailey DB Jr, Armstrong FD, Kemper AR, Skinner D, Warren SF. Supporting<br \/>\nfamily adaptation to presymptomatic and &#8220;untreatable&#8221; conditions in an era of<br \/>\nexpanded newborn screening. J Pediatr Psychol. 2009 Jul;34(6):648-61. doi:<br \/>\n10.1093\/jpepsy\/jsn032. Epub 2008 Mar 30. PubMed PMID: 18378512; PubMed Central<br \/>\nPMCID: PMC2722102.<\/p>\n<p>85: Schaffer R, Kuczynski K, Skinner D. Producing genetic knowledge and<br \/>\ncitizenship through the Internet: mothers, pediatric genetics, and cybermedicine.<br \/>\nSociol Health Illn. 2008 Jan;30(1):145-59. doi: 10.1111\/j.1467-9566.2007.01042.x.<br \/>\nPubMed PMID: 18254838.<\/p>\n<p>86: Raspberry K, Skinner D. Experiencing the genetic body: parents&#8217; encounters<br \/>\nwith pediatric clinical genetics. Med Anthropol. 2007 Oct-Dec;26(4):355-91.<br \/>\nPubMed PMID: 17943604.<\/p>\n<p>87: Bailey DB Jr, Beskow LM, Davis AM, Skinner D. Changing perspectives on the<br \/>\nbenefits of newborn screening. Ment Retard Dev Disabil Res Rev. 2006;12(4):270-9.<br \/>\nPubMed PMID: 17183569.<\/p>\n<p>88: Conley JM, Cook-Deegan R, L\u00e1zaro-Mu\u00f1oz G. MYRIAD AFTER MYRIAD: THE<br \/>\nPROPRIETARY DATA DILEMMA. N C J Law Technol. 2014 Jun;15(4):597-637. PubMed PMID:<br \/>\n25544836; PubMed Central PMCID: PMC4275833.<\/p>\n<p>89: Cook-Deegan R, Conley JM, Evans JP, Vorhaus D. The next controversy in<br \/>\ngenetic testing: clinical data as trade secrets? Eur J Hum Genet. 2013<br \/>\nJun;21(6):585-8. doi: 10.1038\/ejhg.2012.217. Epub 2012 Nov 14. PubMed PMID:<br \/>\n23150081; PubMed Central PMCID: PMC3658186.<\/p>\n<p>90: Conley JM, Doerr AK, Vorhaus DB. Enabling responsible public genomics. Health<br \/>\nMatrix Clevel. 2010;20(2):325-85. PubMed PMID: 21243847.<\/p>\n<p>91: Webber EM, Hunter JE, Biesecker LG, Buchanan AH, Clarke EV, Currey E,<br \/>\nDagan-Rosenfeld O, Lee K, Lindor NM, Martin CL, Milosavljevic A, Mittendorf KF,<br \/>\nMuessig KR, O&#8217;Daniel JM, Patel RY, Ramos EM, Rego S, Slavotinek AM, Sobriera NLM,<br \/>\nWeaver MA, Williams MS, Evans JP, Goddard KAB; ClinGen Resource. Evidence-based<br \/>\nassessments of clinical actionability in the context of secondary findings:<br \/>\nUpdates from ClinGen&#8217;s Actionability Working Group. Hum Mutat. 2018<br \/>\nNov;39(11):1677-1685. doi: 10.1002\/humu.23631. PubMed PMID: 30311382.<\/p>\n<p>92: Haskell GT, Adams MC, Fan Z, Amin K, Guzman Badillo RJ, Zhou L, Bizon C,<br \/>\nChahin N, Greenwood RS, Milko LV, Shiloh-Malawsky Y, Crooks KR, Strande N,<br \/>\nTennison M, Tilley CR, Brandt A, Wilhelmsen KC, Weck K, Evans JP, Berg JS.<br \/>\nDiagnostic utility of exome sequencing in the evaluation of neuromuscular<br \/>\ndisorders. Neurol Genet. 2018 Feb 1;4(1):e212. doi: 10.1212\/NXG.0000000000000212.<br \/>\neCollection 2018 Feb. PubMed PMID: 29417091; PubMed Central PMCID: PMC5798313.<\/p>\n<p>93: Bush LW, Beck AE, Biesecker LG, Evans JP, Hamosh A, Holm IA, Martin CL,<br \/>\nRichards CS, Rehm HL. Professional responsibilities regarding the provision,<br \/>\npublication, and dissemination of patient phenotypes in the context of clinical<br \/>\ngenetic and genomic testing: points to consider-a statement of the American<br \/>\nCollege of Medical Genetics and Genomics (ACMG). Genet Med. 2018<br \/>\nFeb;20(2):169-171. doi: 10.1038\/gim.2017.242. Epub 2018 Jan 11. PubMed PMID:<br \/>\n29323668; PubMed Central PMCID: PMC5931217.<\/p>\n<p>94: Evans JP, Powell BC, Berg JS. Finding the Rare Pathogenic Variants in a Human<br \/>\nGenome. JAMA. 2017 May 9;317(18):1904-1905. doi: 10.1001\/jama.2017.0432. PubMed<br \/>\nPMID: 28492888.<\/p>\n<p>95: Allyse M, Evans JP, Michie M. Dr. Pangloss&#8217;s Clinic: Prenatal Whole Genome<br \/>\nSequencing and a Return to Reality. Am J Bioeth. 2017 Jan;17(1):21-23. PubMed<br \/>\nPMID: 27996895; PubMed Central PMCID: PMC5333773.<\/p>\n<p>96: May T, Strong KA, Zusevics KL, Jeruzal J, Farrell MH, LaPean Kirschner A,<br \/>\nDerse AR, Evans JP, Grotevant HD. Does Lack of &#8220;Genetic-Relative Family Health<br \/>\nHistory&#8221; Represent a Potentially Avoidable Health Disparity for Adoptees? Am J<br \/>\nBioeth. 2016 Dec;16(12):33-38. PubMed PMID: 27901440.<\/p>\n<p>97: May T, Evans JP, Strong KA, Zusevics KL, Derse AR, Jeruzal J, LaPean<br \/>\nKirschner A, Farrell MH, Grotevant HD. Issues of &#8220;Cost, Capabilities, and Scope&#8221;<br \/>\nin Characterizing Adoptees&#8217; Lack of &#8220;Genetic-Relative Family Health History&#8221; as<br \/>\nan Avoidable Health Disparity: Response to Open Peer Commentaries on &#8220;Does Lack<br \/>\nof &#8216;Genetic-Relative Family Health History&#8217; Represent a Potentially Avoidable<br \/>\nHealth Disparity for Adoptees?&#8221; Am J Bioeth. 2016 Dec;16(12):W4-W8. PubMed PMID:<br \/>\n27901431.<\/p>\n<p>98: Kalia SS, Adelman K, Bale SJ, Chung WK, Eng C, Evans JP, Herman GE, Hufnagel<br \/>\nSB, Klein TE, Korf BR, McKelvey KD, Ormond KE, Richards CS, Vlangos CN, Watson M,<br \/>\nMartin CL, Miller DT. Recommendations for reporting of secondary findings in<br \/>\nclinical exome and genome sequencing, 2016 update (ACMG SF v2.0): a policy<br \/>\nstatement of the American College of Medical Genetics and Genomics. Genet Med.<br \/>\n2017 Feb;19(2):249-255. doi: 10.1038\/gim.2016.190. Epub 2016 Nov 17. Erratum in:<br \/>\nGenet Med. 2017 Apr;19(4):484. PubMed PMID: 27854360.<\/p>\n<p>99: O&#8217;Daniel JM, McLaughlin HM, Amendola LM, Bale SJ, Berg JS, Bick D, Bowling<br \/>\nKM, Chao EC, Chung WK, Conlin LK, Cooper GM, Das S, Deignan JL, Dorschner MO,<br \/>\nEvans JP, Ghazani AA, Goddard KA, Gornick M, Farwell Hagman KD, Hambuch T, Hegde<br \/>\nM, Hindorff LA, Holm IA, Jarvik GP, Knight Johnson A, Mighion L, Morra M, Plon<br \/>\nSE, Punj S, Richards CS, Santani A, Shirts BH, Spinner NB, Tang S, Weck KE, Wolf<br \/>\nSM, Yang Y, Rehm HL. A survey of current practices for genomic sequencing test<br \/>\ninterpretation and reporting processes in US laboratories. Genet Med. 2017<br \/>\nMay;19(5):575-582. doi: 10.1038\/gim.2016.152. Epub 2016 Nov 3. PubMed PMID:<br \/>\n27811861; PubMed Central PMCID: PMC5415437.<\/p>\n<p>100: Evans JP. (Mis)understanding Science: The Problem with Scientific<br \/>\nBreakthroughs. Hastings Cent Rep. 2016 Sep;46(5):11-3. doi: 10.1002\/hast.611.<br \/>\nPubMed PMID: 27649823.<\/p>\n<p>101: Hunter JE, Irving SA, Biesecker LG, Buchanan A, Jensen B, Lee K, Martin CL,<br \/>\nMilko L, Muessig K, Niehaus AD, O&#8217;Daniel J, Piper MA, Ramos EM, Schully SD, Scott<br \/>\nAF, Slavotinek A, Sobreira N, Strande N, Weaver M, Webber EM, Williams MS, Berg<br \/>\nJS, Evans JP, Goddard KA. A standardized, evidence-based protocol to assess<br \/>\nclinical actionability of genetic disorders associated with genomic variation.<br \/>\nGenet Med. 2016 Dec;18(12):1258-1268. doi: 10.1038\/gim.2016.40. Epub 2016 Apr 28.<br \/>\nPubMed PMID: 27124788; PubMed Central PMCID: PMC5085884.<\/p>\n<p>102: Khoury MJ, Evans JP. A public health perspective on a national precision<br \/>\nmedicine cohort: balancing long-term knowledge generation with early health<br \/>\nbenefit. JAMA. 2015 Jun 2;313(21):2117-8. doi: 10.1001\/jama.2015.3382. PubMed<br \/>\nPMID: 26034952; PubMed Central PMCID: PMC4685667.<\/p>\n<p>103: Rehm HL, Berg JS, Brooks LD, Bustamante CD, Evans JP, Landrum MJ, Ledbetter<br \/>\nDH, Maglott DR, Martin CL, Nussbaum RL, Plon SE, Ramos EM, Sherry ST, Watson MS;<br \/>\nClinGen. ClinGen&#8211;the Clinical Genome Resource. N Engl J Med. 2015 Jun<br \/>\n4;372(23):2235-42. doi: 10.1056\/NEJMsr1406261. Epub 2015 May 27. PubMed PMID:<br \/>\n26014595; PubMed Central PMCID: PMC4474187.<\/p>\n<p>104: Janssens AC, Evans JP. Returning pharmacogenetic secondary findings from<br \/>\ngenome sequencing: let&#8217;s not put the cart before the horse. Genet Med. 2015<br \/>\nNov;17(11):854-6. doi: 10.1038\/gim.2015.59. Epub 2015 May 7. PubMed PMID:<br \/>\n25950734.<\/p>\n<p>105: Lee K, Berg JS, Milko L, Crooks K, Lu M, Bizon C, Owen P, Wilhelmsen KC,<br \/>\nWeck KE, Evans JP, Garg S. High Diagnostic Yield of Whole Exome Sequencing in<br \/>\nParticipants With Retinal Dystrophies in a Clinical Ophthalmology Setting. Am J<br \/>\nOphthalmol. 2015 Aug;160(2):354-363.e9. doi: 10.1016\/j.ajo.2015.04.026. Epub 2015<br \/>\nApr 22. PubMed PMID: 25910913; PubMed Central PMCID: PMC4506879.<\/p>\n<p>106: May T, Strong KA, Khoury MJ, Evans JP. Can targeted genetic testing offer<br \/>\nuseful health information to adoptees? Genet Med. 2015 Jul;17(7):533-5. doi:<br \/>\n10.1038\/gim.2015.58. Epub 2015 Apr 23. PubMed PMID: 25905442; PubMed Central<br \/>\nPMCID: PMC4701205.<\/p>\n<p>107: Amendola LM, Dorschner MO, Robertson PD, Salama JS, Hart R, Shirts BH,<br \/>\nMurray ML, Tokita MJ, Gallego CJ, Kim DS, Bennett JT, Crosslin DR, Ranchalis J,<br \/>\nJones KL, Rosenthal EA, Jarvik ER, Itsara A, Turner EH, Herman DS, Schleit J,<br \/>\nBurt A, Jamal SM, Abrudan JL, Johnson AD, Conlin LK, Dulik MC, Santani A,<br \/>\nMetterville DR, Kelly M, Foreman AK, Lee K, Taylor KD, Guo X, Crooks K,<br \/>\nKiedrowski LA, Raffel LJ, Gordon O, Machini K, Desnick RJ, Biesecker LG, Lubitz<br \/>\nSA, Mulchandani S, Cooper GM, Joffe S, Richards CS, Yang Y, Rotter JI, Rich SS,<br \/>\nO&#8217;Donnell CJ, Berg JS, Spinner NB, Evans JP, Fullerton SM, Leppig KA, Bennett RL,<br \/>\nBird T, Sybert VP, Grady WM, Tabor HK, Kim JH, Bamshad MJ, Wilfond B, Motulsky<br \/>\nAG, Scott CR, Pritchard CC, Walsh TD, Burke W, Raskind WH, Byers P, Hisama FM,<br \/>\nRehm H, Nickerson DA, Jarvik GP. Actionable exomic incidental findings in 6503<br \/>\nparticipants: challenges of variant classification. Genome Res. 2015<br \/>\nMar;25(3):305-15. doi: 10.1101\/gr.183483.114. Epub 2015 Jan 30. PubMed PMID:<br \/>\n25637381; PubMed Central PMCID: PMC4352885.<\/p>\n<p>108: Evans JP, Watson MS. Genetic testing and FDA regulation: overregulation<br \/>\nthreatens the emergence of genomic medicine. JAMA. 2015 Feb 17;313(7):669-70.<br \/>\ndoi: 10.1001\/jama.2014.18145. PubMed PMID: 25560537.<\/p>\n<p>109: Jarvik GP, Amendola LM, Berg JS, Brothers K, Clayton EW, Chung W, Evans BJ,<br \/>\nEvans JP, Fullerton SM, Gallego CJ, Garrison NA, Gray SW, Holm IA, Kullo IJ,<br \/>\nLehmann LS, McCarty C, Prows CA, Rehm HL, Sharp RR, Salama J, Sanderson S, Van<br \/>\nDriest SL, Williams MS, Wolf SM, Wolf WA; eMERGE Act-ROR Committee and CERC<br \/>\nCommittee; CSER Act-ROR Working\u00a0Group, Burke W. Return of genomic results to<br \/>\nresearch participants: the floor, the ceiling, and the choices in between. Am J<br \/>\nHum Genet. 2014 Jun 5;94(6):818-26. doi: 10.1016\/j.ajhg.2014.04.009. Epub 2014<br \/>\nMay 8. PubMed PMID: 24814192; PubMed Central PMCID: PMC4121476.<\/p>\n<p>110: Foreman AK, Lee K, Evans JP. The NCGENES project: exploring the new world of<br \/>\ngenome sequencing. N C Med J. 2013 Nov-Dec;74(6):500-4. PubMed PMID: 24316776.<\/p>\n<p>111: Adams SD, Evans JP, Aylsworth AS. Direct-to-consumer genomic testing offers<br \/>\nlittle clinical utility but appears to cause minimal harm. N C Med J. 2013<br \/>\nNov-Dec;74(6):494-8. PubMed PMID: 24316774.<\/p>\n<p>112: Berg JS, Amendola LM, Eng C, Van Allen E, Gray SW, Wagle N, Rehm HL, DeChene<br \/>\nET, Dulik MC, Hisama FM, Burke W, Spinner NB, Garraway L, Green RC, Plon S, Evans<br \/>\nJP, Jarvik GP; Members of the CSER Actionability and Return of Results Working<br \/>\nGroup. Processes and preliminary outputs for identification of actionable genes<br \/>\nas incidental findings in genomic sequence data in the Clinical Sequencing<br \/>\nExploratory Research Consortium. Genet Med. 2013 Nov;15(11):860-7. doi:<br \/>\n10.1038\/gim.2013.133. Epub 2013 Oct 24. Review. Erratum in: Genet Med. 2014<br \/>\nFeb;16(2):203. PubMed PMID: 24195999; PubMed Central PMCID: PMC3935342.<\/p>\n<p>113: Evans JP. Finding common ground. Genet Med. 2013 Nov;15(11):852-3. doi:<br \/>\n10.1038\/gim.2013.150. Epub 2013 Oct 17. PubMed PMID: 24136615.<\/p>\n<p>114: Evans JP. Return of results to the families of children in genomic<br \/>\nsequencing: tallying risks and benefits. Genet Med. 2013 Jun;15(6):435-6. doi:<br \/>\n10.1038\/gim.2013.54. PubMed PMID: 23739673.<\/p>\n<p>115: Evans JP. When is a medical finding &#8220;incidental&#8221;? Genet Med. 2013<br \/>\nJul;15(7):515-6. doi: 10.1038\/gim.2013.74. Epub 2013 May 30. PubMed PMID:<br \/>\n23722872.<\/p>\n<p>116: McGuire AL, McCullough LB, Evans JP. The indispensable role of professional<br \/>\njudgment in genomic medicine. JAMA. 2013 Apr 10;309(14):1465-6. doi:<br \/>\n10.1001\/jama.2013.1438. PubMed PMID: 23571582; PubMed Central PMCID: PMC3760691.<\/p>\n<p>117: Evans JP, Berg JS, Olshan AF, Magnuson T, Rimer BK. We screen newborns,<br \/>\ndon&#8217;t we?: realizing the promise of public health genomics. Genet Med. 2013<br \/>\nMay;15(5):332-4. doi: 10.1038\/gim.2013.11. Epub 2013 Mar 7. Review. PubMed PMID:<br \/>\n23470837; PubMed Central PMCID: PMC4789099.<\/p>\n<p>118: Evans JP, Khoury MJ. The arrival of genomic medicine to the clinic is only<br \/>\nthe beginning of the journey. Genet Med. 2013 Apr;15(4):268-9. doi:<br \/>\n10.1038\/gim.2012.133. Epub 2013 Jan 10. PubMed PMID: 23306801; PubMed Central<br \/>\nPMCID: PMC4693143.<\/p>\n<p>119: Dobson AW, Evans JP. Gene patents in the US&#8211;focusing on what really<br \/>\nmatters. Genome Biol. 2012 Jun 29;13(6):161. doi: 10.1186\/gb-2012-13-6-161.<br \/>\nPubMed PMID: 22748211; PubMed Central PMCID: PMC3446309.<\/p>\n<p>120: Evans JP, Rothschild BB. Return of results: not that complicated? Genet Med.<br \/>\n2012 Apr;14(4):358-60. doi: 10.1038\/gim.2012.8. PubMed PMID: 22481183.<\/p>\n<p>121: Green RC, Berg JS, Berry GT, Biesecker LG, Dimmock DP, Evans JP, Grody WW,<br \/>\nHegde MR, Kalia S, Korf BR, Krantz I, McGuire AL, Miller DT, Murray MF, Nussbaum<br \/>\nRL, Plon SE, Rehm HL, Jacob HJ. Exploring concordance and discordance for return<br \/>\nof incidental findings from clinical sequencing. Genet Med. 2012<br \/>\nApr;14(4):405-10. doi: 10.1038\/gim.2012.21. Epub 2012 Mar 15. PubMed PMID:<br \/>\n22422049; PubMed Central PMCID: PMC3763716.<\/p>\n<p>122: Evans JP, Berg JS. Next-generation DNA sequencing, regulation, and the<br \/>\nlimits of paternalism: the next challenge. JAMA. 2011 Dec 7;306(21):2376-7. doi:<br \/>\n10.1001\/jama.2011.1788. PubMed PMID: 22147382.<\/p>\n<p>123: Spencer DH, Lockwood C, Topol E, Evans JP, Green RC, Mansfield E, Tezak Z.<br \/>\nDirect-to-consumer genetic testing: reliable or risky? Clin Chem. 2011<br \/>\nDec;57(12):1641-4. doi: 10.1373\/clinchem.2011.167197. Epub 2011 Sep 1. PubMed<br \/>\nPMID: 21885623.<\/p>\n<p>124: Dreyfuss R, Evans JP. From Bilski back to Benson: preemption, inventing<br \/>\naround, and the case of genetic diagnostics. Stanford Law Rev. 2011<br \/>\nJun;63(6):1349-76. PubMed PMID: 21774194.<\/p>\n<p>125: Burke W, Tarini B, Press NA, Evans JP. Genetic screening. Epidemiol Rev.<br \/>\n2011;33:148-64. doi: 10.1093\/epirev\/mxr008. Epub 2011 Jun 27. Review. PubMed<br \/>\nPMID: 21709145; PubMed Central PMCID: PMC3166195.<\/p>\n<p>126: Evans JP. That personal touch. Hastings Cent Rep. 2011 May-Jun;41(3):5-6.<br \/>\nPubMed PMID: 21678801.<\/p>\n<p>127: Berg JS, Khoury MJ, Evans JP. Deploying whole genome sequencing in clinical<br \/>\npractice and public health: meeting the challenge one bin at a time. Genet Med.<br \/>\n2011 Jun;13(6):499-504. doi: 10.1097\/GIM.0b013e318220aaba. PubMed PMID: 21558861.<\/p>\n<p>128: Khoury MJ, Bowen MS, Burke W, Coates RJ, Dowling NF, Evans JP, Reyes M, St<br \/>\nPierre J. Current priorities for public health practice in addressing the role of<br \/>\nhuman genomics in improving population health. Am J Prev Med. 2011<br \/>\nApr;40(4):486-93. doi: 10.1016\/j.amepre.2010.12.009. PubMed PMID: 21406285;<br \/>\nPubMed Central PMCID: PMC5624316.<\/p>\n<p>129: Evans JP. Looking ahead, looking behind. Introduction. Genet Med. 2011<br \/>\nMar;13(3):177-8. doi: 10.1097\/GIM.0b013e318210b0a7. PubMed PMID: 21346480.<\/p>\n<p>130: Evans JP, Meslin EM, Marteau TM, Caulfield T. Genomics. Deflating the<br \/>\ngenomic bubble. Science. 2011 Feb 18;331(6019):861-2. doi:<br \/>\n10.1126\/science.1198039. PubMed PMID: 21330519.<\/p>\n<p>131: Khoury MJ, Coates RJ, Evans JP. Evidence-based classification of<br \/>\nrecommendations on use of genomic tests in clinical practice: dealing with<br \/>\ninsufficient evidence. Genet Med. 2010 Nov;12(11):680-3. doi:<br \/>\n10.1097\/GIM.0b013e3181f9ad55. PubMed PMID: 20975567.<\/p>\n<p>132: Evans JP, Dale DC, Fomous C. Preparing for a consumer-driven genomic age. N<br \/>\nEngl J Med. 2010 Sep 16;363(12):1099-103. doi: 10.1056\/NEJMp1006202. Epub 2010<br \/>\nAug 18. PubMed PMID: 20843241.<\/p>\n<p>133: Evans JP. The Human Genome Project at 10 years: a teachable moment. Genet<br \/>\nMed. 2010 Aug;12(8):477. doi: 10.1097\/GIM.0b013e3181ef16b6. PubMed PMID:<br \/>\n20703139.<\/p>\n<p>134: Evans JP, Burke W, Khoury M. The rules remain the same for genomic medicine:<br \/>\nthe case against &#8220;reverse genetic exceptionalism&#8221;. Genet Med. 2010<br \/>\nJun;12(6):342-3. doi: 10.1097\/GIM.0b013e3181deb308. PubMed PMID: 20556868.<\/p>\n<p>135: Evans JP. Putting patients before patents. Genet Med. 2010 Apr;12(4):204-5.<br \/>\ndoi: 10.1097\/GIM.0b013e3181d74c1c. PubMed PMID: 20395743.<\/p>\n<p>136: Evans JP. The Origin. Genet Med. 2009 Nov;11(11):776-7. doi:<br \/>\n10.1097\/GIM.0b013e3181c03a17. PubMed PMID: 19938246.<\/p>\n<p>137: Ader T, Susswein LR, Callanan NP, Evans JP. Attitudes and practice of<br \/>\ngenetic counselors regarding anonymous testing for BRCA1\/2. J Genet Couns. 2009<br \/>\nDec;18(6):606-17. doi: 10.1007\/s10897-009-9250-z. Epub 2009 Oct 2. PubMed PMID:<br \/>\n19798553.<\/p>\n<p>138: Grosse SD, McBride CM, Evans JP, Khoury MJ. Personal utility and genomic<br \/>\ninformation: look before you leap. Genet Med. 2009 Aug;11(8):575-6. doi:<br \/>\n10.1097\/GIM.0b013e3181af0a80. PubMed PMID: 19623080; PubMed Central PMCID:<br \/>\nPMC3417335.<\/p>\n<p>139: Evans JP, Green RC. Direct to consumer genetic testing: Avoiding a culture<br \/>\nwar. Genet Med. 2009 Aug;11(8):568-9. doi: 10.1097\/GIM.0b013e3181afbaed. PubMed<br \/>\nPMID: 19606051; PubMed Central PMCID: PMC2920210.<\/p>\n<p>140: Evans JP. The voyage continues: Darwin and medicine at 200 years. JAMA. 2009<br \/>\nFeb 11;301(6):663-5. doi: 10.1001\/jama.2009.102. PubMed PMID: 19211473.<\/p>\n<p>141: Evans JP. Recreational genomics; what&#8217;s in it for you? Genet Med. 2008<br \/>\nOct;10(10):709-10. doi: 10.1097\/GIM.0b013e3181859959. PubMed PMID: 18813136;<br \/>\nPubMed Central PMCID: PMC2672622.<\/p>\n<p>142: Evans JP, Burke W. Genetic exceptionalism. Too much of a good thing? Genet<br \/>\nMed. 2008 Jul;10(7):500-1. doi: 10.1097GIM.0b013e31817f280a. PubMed PMID:<br \/>\n18580684.<\/p>\n<p>143: Robin NH, Evans JP. Why physicians must understand evolution. Curr Opin<br \/>\nPediatr. 2009 Dec;21(6):699-702. doi: 10.1097\/MOP.0b013e3283323aa8. Review.<br \/>\nPubMed PMID: 19770767.<\/p>\n<p>144: Evans JP. Health care in the age of genetic medicine. Genet Med. 2008<br \/>\nJan;10(1):1-3. doi: 10.1097\/GIM.0b013e318164c669. Review. PubMed PMID: 18197050.<\/p>\n<p>145: Susswein LR, Skrzynia C, Lange LA, Booker JK, Graham ML 3rd, Evans JP.<br \/>\nIncreased uptake of BRCA1\/2 genetic testing among African American women with a<br \/>\nrecent diagnosis of breast cancer. J Clin Oncol. 2008 Jan 1;26(1):32-6. doi:<br \/>\n10.1200\/JCO.2007.10.6377. PubMed PMID: 18165638.<\/p>\n<p>146: Evans JP. Health care in the age of genetic medicine. JAMA. 2007 Dec<br \/>\n12;298(22):2670-2. PubMed PMID: 18073364.<\/p>\n<p>147: Evans JP. A future for medical genetics: lessons from Catch 22. Genet Med.<br \/>\n2007 Jan;9(1):1-3. PubMed PMID: 17224683.<\/p>\n<p>148: Evans JP. Celebrating the birthday of our intellectual common ancestor.<br \/>\nGenet Med. 2007 Feb;9(2):63-4. PubMed PMID: 17304045.<\/p>\n<p>149: Milko LV, Rini C, Lewis MA, Butterfield RM, Lin FC, Paquin RS, Powell BC,<br \/>\nRoche MI, Souris KJ, Bailey DB Jr, Berg JS, Powell CM. Evaluating parents&#8217;<br \/>\ndecisions about next-generation sequencing for their child in the NC NEXUS (North<br \/>\nCarolina Newborn Exome Sequencing for Universal Screening) study: a randomized<br \/>\ncontrolled trial protocol. Trials. 2018 Jun 28;19(1):344. doi:<br \/>\n10.1186\/s13063-018-2686-4. PubMed PMID: 29950170; PubMed Central PMCID:<br \/>\nPMC6022715.<\/p>\n<p>150: Ormond KE, Hallquist MLG, Buchanan AH, Dondanville D, Cho MK, Smith M, Roche<br \/>\nM, Brothers KB, Coughlin CR 2nd, Hercher L, Hudgins L, Jamal S, Levy HP, Raskin<br \/>\nM, Stosic M, Uhlmann W, Wain KE, Currey E, Faucett WA. Developing a conceptual,<br \/>\nreproducible, rubric-based approach to consent and result disclosure for genetic<br \/>\ntesting by clinicians with minimal genetics background. Genet Med. 2018 Jul 6.<br \/>\ndoi: 10.1038\/s41436-018-0093-6. [Epub ahead of print] PubMed PMID: 29976988.<\/p>\n<p>151: Amendola LM, Robinson JO, Hart R, Biswas S, Lee K, Bernhardt BA, East K,<br \/>\nGilmore MJ, Kauffman TL, Lewis KL, Roche M, Scollon S, Wynn J, Blout C. Why<br \/>\nPatients Decline Genomic Sequencing Studies: Experiences from the CSER<br \/>\nConsortium. J Genet Couns. 2018 Sep;27(5):1220-1227. doi:<br \/>\n10.1007\/s10897-018-0243-7. Epub 2018 Mar 1. PubMed PMID: 29497922; PubMed Central<br \/>\nPMCID: PMC6119550.<\/p>\n<p>152: Lewis MA, Stine A, Paquin RS, Mansfield C, Wood D, Rini C, Roche MI, Powell<br \/>\nCM, Berg JS, Bailey DB Jr. Parental preferences toward genomic sequencing for<br \/>\nnon-medically actionable conditions in children: a discrete-choice experiment.<br \/>\nGenet Med. 2018 Feb;20(2):181-189. doi: 10.1038\/gim.2017.93. Epub 2017 Aug 3.<br \/>\nPubMed PMID: 28771249; PubMed Central PMCID: PMC5868968.<\/p>\n<p>153: Berg JS, Agrawal PB, Bailey DB Jr, Beggs AH, Brenner SE, Brower AM, Cakici<br \/>\nJA, Ceyhan-Birsoy O, Chan K, Chen F, Currier RJ, Dukhovny D, Green RC, Harris-Wai<br \/>\nJ, Holm IA, Iglesias B, Joseph G, Kingsmore SF, Koenig BA, Kwok PY, Lantos J,<br \/>\nLeeder SJ, Lewis MA, McGuire AL, Milko LV, Mooney SD, Parad RB, Pereira S,<br \/>\nPetrikin J, Powell BC, Powell CM, Puck JM, Rehm HL, Risch N, Roche M, Shieh JT,<br \/>\nVeeraraghavan N, Watson MS, Willig L, Yu TW, Urv T, Wise AL. Newborn Sequencing<br \/>\nin Genomic Medicine and Public Health. Pediatrics. 2017 Feb;139(2). pii:<br \/>\ne20162252. doi: 10.1542\/peds.2016-2252. Epub 2017 Jan 17. PubMed PMID: 28096516;<br \/>\nPubMed Central PMCID: PMC5260149.<\/p>\n<p>154: Langer MM, Roche MI, Brewer NT, Berg JS, Khan CM, Leos C, Moore E, Brown M,<br \/>\nRini C. Development and Validation of a Genomic Knowledge Scale to Advance<br \/>\nInformed Decision Making Research in Genomic Sequencing. MDM Policy Pract. 2017<br \/>\nJan-Jun;2(1). doi: 10.1177\/2381468317692582. Epub 2017 Feb 1. PubMed PMID:<br \/>\n29928697; PubMed Central PMCID: PMC6005662.<\/p>\n<p>155: Lewis MA, Paquin RS, Roche MI, Furberg RD, Rini C, Berg JS, Powell CM,<br \/>\nBailey DB Jr. Supporting Parental Decisions About Genomic Sequencing for Newborn<br \/>\nScreening: The NC NEXUS Decision Aid. Pediatrics. 2016 Jan;137 Suppl 1:S16-23.<br \/>\ndoi: 10.1542\/peds.2015-3731E. PubMed PMID: 26729698; PubMed Central PMCID:<br \/>\nPMC4922487.<\/p>\n<p>156: Roche MI, Berg JS. Incidental Findings with Genomic Testing: Implications<br \/>\nfor Genetic Counseling Practice. Curr Genet Med Rep. 2015;3(4):166-176. Epub 2015<br \/>\nAug 25. Review. PubMed PMID: 26566463; PubMed Central PMCID: PMC4633435.<\/p>\n<p>157: Bailey DB Jr, Wheeler A, Berry-Kravis E, Hagerman R, Tassone F, Powell CM,<br \/>\nRoche M, Gane LW, Sideris J. Maternal Consequences of the Detection of Fragile X<br \/>\nCarriers in Newborn Screening. Pediatrics. 2015 Aug;136(2):e433-40. doi:<br \/>\n10.1542\/peds.2015-0414. Epub 2015 Jul 13. PubMed PMID: 26169437; PubMed Central<br \/>\nPMCID: PMC4516945.<\/p>\n<p>158: Prince AE, Roche MI. Genetic information, non-discrimination, and privacy<br \/>\nprotections in genetic counseling practice. J Genet Couns. 2014<br \/>\nDec;23(6):891-902. doi: 10.1007\/s10897-014-9743-2. Epub 2014 Jul 27. PubMed PMID:<br \/>\n25063358; PubMed Central PMCID: PMC4233176.<\/p>\n<p>159: Roche MI, Palmer CG. Next generation genetic counseling: introduction to the<br \/>\nspecial issue. J Genet Couns. 2014 Aug;23(4):439-44. doi:<br \/>\n10.1007\/s10897-014-9729-0. Epub 2014 May 18. PubMed PMID: 24838698; PubMed<br \/>\nCentral PMCID: PMC4096054.<\/p>\n<p>160: Clayton EW, McCullough LB, Biesecker LG, Joffe S, Ross LF, Wolf SM; Clinical<br \/>\nSequencing Exploratory Research (CSER) Consortium Pediatrics Working Group.<br \/>\nAddressing the ethical challenges in genetic testing and sequencing of children.<br \/>\nAm J Bioeth. 2014;14(3):3-9. doi: 10.1080\/15265161.2013.879945. PubMed PMID:<br \/>\n24592828; PubMed Central PMCID: PMC3950962.<\/p>\n<p>161: Bailey DB Jr, Bann C, Bishop E, Guarda S, Barnum L, Roche M. Can a decision<br \/>\naid enable informed decisions in neonatal nursery recruitment for a fragile X<br \/>\nnewborn screening study? Genet Med. 2013 Apr;15(4):299-306. doi:<br \/>\n10.1038\/gim.2012.135. Epub 2012 Oct 25. PubMed PMID: 23100013.<\/p>\n<p>162: Roche MI. Moving toward NextGenetic counseling. Genet Med. 2012<br \/>\nSep;14(9):777-8. doi: 10.1038\/gim.2012.84. Epub 2012 Jul 12. PubMed PMID:<br \/>\n22791211.<\/p>\n<p>163: Bailey DB Jr, Lewis MA, Harris SL, Grant T, Bann C, Bishop E, Roche M,<br \/>\nGuarda S, Barnum L, Powell C, Therrell BL Jr. Design and evaluation of a decision<br \/>\naid for inviting parents to participate in a fragile X newborn screening pilot<br \/>\nstudy. J Genet Couns. 2013 Feb;22(1):108-17. doi: 10.1007\/s10897-012-9511-0. Epub<br \/>\n2012 Jun 27. PubMed PMID: 22736213.<\/p>\n<p>164: Rivera-Mu\u00f1oz EA, Milko LV, Harrison SM, Azzariti DR, Kurtz CL, Lee K, Mester<br \/>\nJL, Weaver MA, Currey E, Craigen W, Eng C, Funke B, Hegde M, Hershberger RE, Mao<br \/>\nR, Steiner RD, Vincent LM, Martin CL, Plon SE, Ramos E, Rehm HL, Watson M, Berg<br \/>\nJS. ClinGen Variant Curation Expert Panel experiences and standardized processes<br \/>\nfor disease and gene-level specification of the ACMG\/AMP guidelines for sequence<br \/>\nvariant interpretation. Hum Mutat. 2018 Nov;39(11):1614-1622. doi:<br \/>\n10.1002\/humu.23645. PubMed PMID: 30311389.<\/p>\n<p>165: McGlaughon JL, Goldstein JL, Thaxton C, Hemphill SE, Berg JS. The<br \/>\nprogression of the ClinGen gene clinical validity classification over time. Hum<br \/>\nMutat. 2018 Nov;39(11):1494-1504. doi: 10.1002\/humu.23604. PubMed PMID: 30311372;<br \/>\nPubMed Central PMCID: PMC6190678.<\/p>\n<p>166: Hart MR, Biesecker BB, Blout CL, Christensen KD, Amendola LM, Bergstrom KL,<br \/>\nBiswas S, Bowling KM, Brothers KB, Conlin LK, Cooper GM, Dulik MC, East KM,<br \/>\nEverett JN, Finnila CR, Ghazani AA, Gilmore MJ, Goddard KAB, Jarvik GP, Johnston<br \/>\nJJ, Kauffman TL, Kelley WV, Krier JB, Lewis KL, McGuire AL, McMullen C, Ou J,<br \/>\nPlon SE, Rehm HL, Richards CS, Romasko EJ, Miren Sagardia A, Spinner NB, Thompson<br \/>\nML, Turbitt E, Vassy JL, Wilfond BS, Veenstra DL, Berg JS, Green RC, Biesecker<br \/>\nLG, Hindorff LA. Secondary findings from clinical genomic sequencing: prevalence,<br \/>\npatient perspectives, family history assessment, and health-care costs from a<br \/>\nmultisite study. Genet Med. 2018 Oct 5. doi: 10.1038\/s41436-018-0308-x. [Epub<br \/>\nahead of print] PubMed PMID: 30287922.<\/p>\n<p>167: Meagher KM, Berg JS. Too much of a good thing? Overdiagnosis, or<br \/>\noverestimating risk in preventive genomic screening. Per Med. 2018<br \/>\nSep;15(5):343-346. doi: 10.2217\/pme-2018-0041. Epub 2018 Sep 27. PubMed PMID:<br \/>\n30260288.<\/p>\n<p>168: Amendola LM, Berg JS, Horowitz CR, Angelo F, Bensen JT, Biesecker BB,<br \/>\nBiesecker LG, Cooper GM, East K, Filipski K, Fullerton SM, Gelb BD, Goddard KAB,<br \/>\nHailu B, Hart R, Hassmiller-Lich K, Joseph G, Kenny EE, Koenig BA, Knight S, Kwok<br \/>\nPY, Lewis KL, McGuire AL, Norton ME, Ou J, Parsons DW, Powell BC, Risch N,<br \/>\nRobinson M, Rini C, Scollon S, Slavotinek AM, Veenstra DL, Wasserstein MP,<br \/>\nWilfond BS, Hindorff LA; CSER consortium, Plon SE, Jarvik GP. The Clinical<br \/>\nSequencing Evidence-Generating Research Consortium: Integrating Genomic<br \/>\nSequencing in Diverse and Medically Underserved Populations. Am J Hum Genet. 2018<br \/>\nSep 6;103(3):319-327. doi: 10.1016\/j.ajhg.2018.08.007. PubMed PMID: 30193136;<br \/>\nPubMed Central PMCID: PMC6128306.<\/p>\n<p>169: Milko LV, Funke BH, Hershberger RE, Azzariti DR, Lee K, Riggs ER,<br \/>\nRivera-Munoz EA, Weaver MA, Niehaus A, Currey EL, Craigen WJ, Mao R, Offit K,<br \/>\nSteiner RD, Martin CL, Rehm HL, Watson MS, Ramos EM, Plon SE, Berg JS.<br \/>\nDevelopment of Clinical Domain Working Groups for the Clinical Genome Resource<br \/>\n(ClinGen): lessons learned and plans for the future. Genet Med. 2018 Sep 5. doi:<br \/>\n10.1038\/s41436-018-0267-2. [Epub ahead of print] PubMed PMID: 30181607.<\/p>\n<p>170: Porter KM, Kauffman TL, Koenig BA, Lewis KL, Rehm HL, Richards CS, Strande<br \/>\nNT, Tabor HK, Wolf SM, Yang Y, Amendola LM, Azzariti DR, Berg JS, Bergstrom K,<br \/>\nBiesecker LG, Biswas S, Bowling KM, Chung WK, Clayton EW, Conlin LK, Cooper GM,<br \/>\nDulik MC, Garraway LA, Ghazani AA, Green RC, Hiatt SM, Jamal SM, Jarvik GP,<br \/>\nGoddard KAB, Wilfond BS; members of the CSER Actionability and Return of Results<br \/>\nWorking Group. Approaches to carrier testing and results disclosure in<br \/>\ntranslational genomics research: The clinical sequencing exploratory research<br \/>\nconsortium experience. Mol Genet Genomic Med. 2018 Aug 21. doi: 10.1002\/mgg3.453.<br \/>\n[Epub ahead of print] PubMed PMID: 30133189.<\/p>\n<p>171: Brnich SE, Rivera-Mu\u00f1oz EA, Berg JS. Quantifying the potential of functional<br \/>\nevidence to reclassify variants of uncertain significance in the categorical and<br \/>\nBayesian interpretation frameworks. Hum Mutat. 2018 Nov;39(11):1531-1541. doi:<br \/>\n10.1002\/humu.23609. Epub 2018 Sep 5. PubMed PMID: 30095857.<\/p>\n<p>172: Strande NT, Brnich SE, Roman TS, Berg JS. Navigating the nuances of clinical<br \/>\nsequence variant interpretation in Mendelian disease. Genet Med. 2018<br \/>\nSep;20(9):918-926. doi: 10.1038\/s41436-018-0100-y. Epub 2018 Jul 10. Review.<br \/>\nPubMed PMID: 29988079.<\/p>\n<p>173: Christensen KD, Bernhardt BA, Jarvik GP, Hindorff LA, Ou J, Biswas S, Powell<br \/>\nBC, Grundmeier RW, Machini K, Karavite DJ, Pennington JW, Krantz ID, Berg JS,<br \/>\nGoddard KAB. Anticipated responses of early adopter genetic specialists and<br \/>\nnongenetic specialists to unsolicited genomic secondary findings. Genet Med. 2018<br \/>\nFeb 1. doi: 10.1038\/gim.2017.243. [Epub ahead of print] PubMed PMID: 29388940;<br \/>\nPubMed Central PMCID: PMC6103906.<\/p>\n<p>174: Mollison L, Berg JS. Genetic screening: birthright or earned with age?<br \/>\nExpert Rev Mol Diagn. 2017 Aug;17(8):735-738. doi: 10.1080\/14737159.2017.1346473.<br \/>\nEpub 2017 Jun 29. PubMed PMID: 28641021; PubMed Central PMCID: PMC6086349.<\/p>\n<p>175: Strande NT, Riggs ER, Buchanan AH, Ceyhan-Birsoy O, DiStefano M, Dwight SS,<br \/>\nGoldstein J, Ghosh R, Seifert BA, Sneddon TP, Wright MW, Milko LV, Cherry JM,<br \/>\nGiovanni MA, Murray MF, O&#8217;Daniel JM, Ramos EM, Santani AB, Scott AF, Plon SE,<br \/>\nRehm HL, Martin CL, Berg JS. Evaluating the Clinical Validity of Gene-Disease<br \/>\nAssociations: An Evidence-Based Framework Developed by the Clinical Genome<br \/>\nResource. Am J Hum Genet. 2017 Jun 1;100(6):895-906. doi:<br \/>\n10.1016\/j.ajhg.2017.04.015. Epub 2017 May 25. PubMed PMID: 28552198; PubMed<br \/>\nCentral PMCID: PMC5473734.<\/p>\n<p>176: Green RC, Berg JS, Grody WW, Kalia SS, Korf BR, Martin CL, McGuire AL,<br \/>\nNussbaum RL, O&#8217;Daniel JM, Ormond KE, Rehm HL, Watson MS, Williams MS, Biesecker<br \/>\nLG. CORRIGENDUM: ACMG recommendations for reporting of incidental findings in<br \/>\nclinical exome and genome sequencing. Genet Med. 2017 May;19(5):606. doi:<br \/>\n10.1038\/gim.2017.18. PubMed PMID: 28492529.<\/p>\n<p>177: Himes P, Kauffman TL, Muessig KR, Amendola LM, Berg JS, Dorschner MO,<br \/>\nGilmore M, Nickerson DA, Reiss JA, Richards CS, Rope AF, Simpson DK, Wilfond BS,<br \/>\nJarvik GP, Goddard KAB. Genome sequencing and carrier testing: decisions on<br \/>\ncategorization and whether to disclose results of carrier testing. Genet Med.<br \/>\n2017 Jul;19(7):803-808. doi: 10.1038\/gim.2016.198. Epub 2017 Jan 12. PubMed PMID:<br \/>\n28079899; PubMed Central PMCID: PMC5509491.<\/p>\n<p>178: O&#8217;Daniel JM, Berg JS. A missing link in the bench-to-bedside paradigm:<br \/>\nengaging regulatory stakeholders in clinical genomics research. Genome Med. 2016<br \/>\nSep 21;8(1):95. PubMed PMID: 27655359; PubMed Central PMCID: PMC5031300.<\/p>\n<p>179: Berg JS. Exploring the importance of case-level clinical information for<br \/>\nvariant interpretation. Genet Med. 2017 Jan;19(1):3-5. doi: 10.1038\/gim.2016.106.<br \/>\nEpub 2016 Aug 25. PubMed PMID: 27561084; PubMed Central PMCID: PMC5225022.<\/p>\n<p>180: Strande NT, Berg JS. Defining the Clinical Value of a Genomic Diagnosis in<br \/>\nthe Era of Next-Generation Sequencing. Annu Rev Genomics Hum Genet. 2016 Aug<br \/>\n31;17:303-32. doi: 10.1146\/annurev-genom-083115-022348. Epub 2016 May 26. Review.<br \/>\nPubMed PMID: 27362341.<\/p>\n<p>181: Leo MC, McMullen C, Wilfond BS, Lynch FL, Reiss JA, Gilmore MJ, Himes P,<br \/>\nKauffman TL, Davis JV, Jarvik GP, Berg JS, Harding C, Kennedy KA, Simpson DK,<br \/>\nQuigley DI, Richards CS, Rope AF, Goddard KA. Patients&#8217; ratings of genetic<br \/>\nconditions validate a taxonomy to simplify decisions about preconception carrier<br \/>\nscreening via genome sequencing. Am J Med Genet A. 2016 Mar;170(3):574-82. doi:<br \/>\n10.1002\/ajmg.a.37477. Epub 2016 Jan 21. PubMed PMID: 26792268; PubMed Central<br \/>\nPMCID: PMC4824299.<\/p>\n<p>182: Berg JS, Powell CM. Potential Uses and Inherent Challenges of Using<br \/>\nGenome-Scale Sequencing to Augment Current Newborn Screening. Cold Spring Harb<br \/>\nPerspect Med. 2015 Oct 5;5(12). pii: a023150. doi: 10.1101\/cshperspect.a023150.<br \/>\nReview. PubMed PMID: 26438605; PubMed Central PMCID: PMC4665041.<\/p>\n<p>183: Botkin JR, Belmont JW, Berg JS, Berkman BE, Bombard Y, Holm IA, Levy HP,<br \/>\nOrmond KE, Saal HM, Spinner NB, Wilfond BS, McInerney JD. Points to Consider:<br \/>\nEthical, Legal, and Psychosocial Implications of Genetic Testing in Children and<br \/>\nAdolescents. Am J Hum Genet. 2015 Jul 2;97(1):6-21. doi:<br \/>\n10.1016\/j.ajhg.2015.05.022. Review. Erratum in: Am J Hum Genet. 2015 Sep<br \/>\n3;97(3):501. PubMed PMID: 26140447; PubMed Central PMCID: PMC4570999.<\/p>\n<p>184: Adams MC, Berg JS, Pearlman MD, Vora NL. Look before you leap: genomic<br \/>\nscreening in obstetrics and gynecology. Obstet Gynecol. 2015 Jun;125(6):1299-305.<br \/>\ndoi: 10.1097\/AOG.0000000000000871. PubMed PMID: 26000500.<\/p>\n<p>185: Berg JS. Genome-scale sequencing in clinical care: establishing molecular<br \/>\ndiagnoses and measuring value. JAMA. 2014 Nov 12;312(18):1865-7. doi:<br \/>\n10.1001\/jama.2014.14665. PubMed PMID: 25326641.<\/p>\n<p>186: Prince AE, Berg JS, Evans JP, Jonas DE, Henderson G. Genomic screening of<br \/>\nthe general adult population: key concepts for assessing net benefit with<br \/>\nsystematic evidence reviews. Genet Med. 2015 Jun;17(6):441-3. doi:<br \/>\n10.1038\/gim.2014.129. Epub 2014 Sep 18. Review. PubMed PMID: 25232850; PubMed<br \/>\nCentral PMCID: PMC4387105.<\/p>\n<p>187: Ramos EM, Din-Lovinescu C, Berg JS, Brooks LD, Duncanson A, Dunn M, Good P,<br \/>\nHubbard TJ, Jarvik GP, O&#8217;Donnell C, Sherry ST, Aronson N, Biesecker LG, Blumberg<br \/>\nB, Calonge N, Colhoun HM, Epstein RS, Flicek P, Gordon ES, Green ED, Green RC,<br \/>\nHurles M, Kawamoto K, Knaus W, Ledbetter DH, Levy HP, Lyon E, Maglott D, McLeod<br \/>\nHL, Rahman N, Randhawa G, Wicklund C, Manolio TA, Chisholm RL, Williams MS.<br \/>\nCharacterizing genetic variants for clinical action. Am J Med Genet C Semin Med<br \/>\nGenet. 2014 Mar;166C(1):93-104. doi: 10.1002\/ajmg.c.31386. Epub 2014 Mar 13.<br \/>\nPubMed PMID: 24634402; PubMed Central PMCID: PMC4158437.<\/p>\n<p>188: Krantz MS, Berg JS. Crowdsourcing to define the clinical actionability of<br \/>\nincidental findings of genetic testing. N C Med J. 2013 Nov-Dec;74(6):501-2.<br \/>\nPubMed PMID: 24316777.<\/p>\n<p>189: Evaluation of Genomic Applications in Practice and Prevention (EGAPP)<br \/>\nWorking Group. The EGAPP initiative: lessons learned. Genet Med. 2014<br \/>\nMar;16(3):217-24. doi: 10.1038\/gim.2013.110. Epub 2013 Aug 8. Review. PubMed<br \/>\nPMID: 23928914.<\/p>\n<p>190: Green RC, Berg JS, Grody WW, Kalia SS, Korf BR, Martin CL, McGuire AL,<br \/>\nNussbaum RL, O&#8217;Daniel JM, Ormond KE, Rehm HL, Watson MS, Williams MS, Biesecker<br \/>\nLG; American College of Medical Genetics and Genomics. ACMG recommendations for<br \/>\nreporting of incidental findings in clinical exome and genome sequencing. Genet<br \/>\nMed. 2013 Jul;15(7):565-74. doi: 10.1038\/gim.2013.73. Epub 2013 Jun 20. Erratum<br \/>\nin: Genet Med. 2017 May;19(5):606. PubMed PMID: 23788249; PubMed Central PMCID:<br \/>\nPMC3727274.<\/p>\n<p>191: Goddard KA, Whitlock EP, Berg JS, Williams MS, Webber EM, Webster JA, Lin<br \/>\nJS, Schrader KA, Campos-Outcalt D, Offit K, Feigelson HS, Hollombe C. Description<br \/>\nand pilot results from a novel method for evaluating return of incidental<br \/>\nfindings from next-generation sequencing technologies. Genet Med. 2013<br \/>\nSep;15(9):721-8. doi: 10.1038\/gim.2013.37. Epub 2013 Apr 4. PubMed PMID:<br \/>\n23558254; PubMed Central PMCID: PMC3927794.<\/p>\n<p>192: Berg JS, French SL, McCullough LB, Kleppe S, Sutton VR, Gunn SK, Karaviti<br \/>\nLP. Ethical and legal implications of genetic testing in androgen insensitivity<br \/>\nsyndrome. J Pediatr. 2007 Apr;150(4):434-8. PubMed PMID: 17382127.<\/p>\n<p>193: Beskow LM, Namey EE, Miller PR, Nelson DK, Cooper A. IRB chairs&#8217;<br \/>\nperspectives on genotype-driven research recruitment. IRB. 2012<br \/>\nMay-Jun;34(3):1-10. PubMed PMID: 22830177; PubMed Central PMCID: PMC3632007.<\/p>\n<p>194: Schmidlen T, Sturm AC, Hovick S, Scheinfeldt L, Scott Roberts J, Morr L,<br \/>\nMcElroy J, Toland AE, Christman M, O&#8217;Daniel JM, Gordon ES, Bernhardt BA, Ormond<br \/>\nKE, Sweet K. Operationalizing the Reciprocal Engagement Model of Genetic<br \/>\nCounseling Practice: a Framework for the Scalable Delivery of Genomic Counseling<br \/>\nand Testing. J Genet Couns. 2018 Sep;27(5):1111-1129. doi:<br \/>\n10.1007\/s10897-018-0230-z. Epub 2018 Feb 19. PubMed PMID: 29460110; PubMed<br \/>\nCentral PMCID: PMC6098987.<\/p>\n<p>195: Facio FM, Lee K, O&#8217;Daniel JM. A genetic counselor&#8217;s guide to using<br \/>\nnext-generation sequencing in clinical practice. J Genet Couns. 2014<br \/>\nAug;23(4):455-62. doi: 10.1007\/s10897-013-9662-7. Epub 2013 Oct 24. PubMed PMID:<br \/>\n24151055.<\/p>\n<p>196: Haga SB, Rosanbalm KD, Boles L, Tindall GM, Livingston TM, O&#8217;Daniel JM.<br \/>\nPromoting public awareness and engagement in genome sciences. J Genet Couns. 2013<br \/>\nAug;22(4):508-16. doi: 10.1007\/s10897-013-9577-3. Epub 2013 Feb 23. PubMed PMID:<br \/>\n23435715; PubMed Central PMCID: PMC3688701.<\/p>\n<p>197: O&#8217;Daniel JM, Lee K. Whole-genome and whole-exome sequencing in hereditary<br \/>\ncancer: impact on genetic testing and counseling. Cancer J. 2012<br \/>\nJul-Aug;18(4):287-92. doi: 10.1097\/PPO.0b013e318262467e. Review. PubMed PMID:<br \/>\n22846728.<\/p>\n<p>198: O&#8217;Daniel JM, Rosanbalm KD, Boles L, Tindall GM, Livingston TM, Haga SB.<br \/>\nEnhancing geneticists&#8217; perspectives of the public through community engagement.<br \/>\nGenet Med. 2012 Feb;14(2):243-9. doi: 10.1038\/gim.2011.29. Epub 2012 Jan 19.<br \/>\nPubMed PMID: 22241095.<\/p>\n<p>199: Haga SB, Tindall G, O&#8217;Daniel JM. Public perspectives about pharmacogenetic<br \/>\ntesting and managing ancillary findings. Genet Test Mol Biomarkers. 2012<br \/>\nMar;16(3):193-7. doi: 10.1089\/gtmb.2011.0118. Epub 2011 Nov 2. PubMed PMID:<br \/>\n22047505; PubMed Central PMCID: PMC3306589.<\/p>\n<p>200: Haga SB, Tindall G, O&#8217;Daniel JM. Professional perspectives about<br \/>\npharmacogenetic testing and managing ancillary findings. Genet Test Mol<br \/>\nBiomarkers. 2012 Jan;16(1):21-4. doi: 10.1089\/gtmb.2011.0045. Epub 2011 Jul 19.<br \/>\nPubMed PMID: 21770772; PubMed Central PMCID: PMC3265769.<\/p>\n<p>201: Haga SB, O&#8217;Daniel JM, Tindall GM, Lipkus IR, Agans R. Public attitudes<br \/>\ntoward ancillary information revealed by pharmacogenetic testing under limited<br \/>\ninformation conditions. Genet Med. 2011 Aug;13(8):723-8. doi:<br \/>\n10.1097\/GIM.0b013e31821afcc0. PubMed PMID: 21633294; PubMed Central PMCID:<br \/>\nPMC3150617.<\/p>\n<p>202: Haga SB, Carrig MM, O&#8217;Daniel JM, Orlando LA, Killeya-Jones LA, Ginsburg GS,<br \/>\nCho A. Genomic risk profiling: attitudes and use in personal and clinical care of<br \/>\nprimary care physicians who offer risk profiling. J Gen Intern Med. 2011<br \/>\nAug;26(8):834-40. doi: 10.1007\/s11606-011-1651-7. Epub 2011 Feb 11. PubMed PMID:<br \/>\n21311998; PubMed Central PMCID: PMC3138989.<\/p>\n<p>203: O&#8217;Daniel JM. The prospect of genome-guided preventive medicine: a need and<br \/>\nopportunity for genetic counselors. J Genet Couns. 2010 Aug;19(4):315-27. doi:<br \/>\n10.1007\/s10897-010-9302-4. Epub 2010 May 4. PubMed PMID: 20440545.<\/p>\n<p>204: O&#8217;Daniel JM, Haga SB, Willard HF. Considerations for the impact of personal<br \/>\ngenome information: a study of genomic profiling among genetics and genomics<br \/>\nprofessionals. J Genet Couns. 2010 Aug;19(4):387-401. doi:<br \/>\n10.1007\/s10897-010-9297-x. Epub 2010 Mar 30. PubMed PMID: 20352309.<\/p>\n<p>205: Powell CM. What Genomic Sequencing Can Offer Universal Newborn Screening<br \/>\nPrograms. Hastings Cent Rep. 2018 Jul;48 Suppl 2:S18-S19. doi: 10.1002\/hast.878.<br \/>\nPubMed PMID: 30133725.<\/p>\n<p>206: Bailey DB Jr, Berry-Kravis E, Gane LW, Guarda S, Hagerman R, Powell CM,<br \/>\nTassone F, Wheeler A. Fragile X Newborn Screening: Lessons Learned From a<br \/>\nMultisite Screening Study. Pediatrics. 2017 Jun;139(Suppl 3):S216-S225. doi:<br \/>\n10.1542\/peds.2016-1159H. PubMed PMID: 28814542.<\/p>\n<p>207: Khan CM, Moore EG, Leos C, Rini C. Patient hopes for diagnostic genomic<br \/>\nsequencing: roles of uncertainty and social status. Eur J Hum Genet. 2016<br \/>\nJun;24(6):803-8. doi: 10.1038\/ejhg.2015.204. Epub 2015 Sep 23. PubMed PMID:<br \/>\n26395557; PubMed Central PMCID: PMC4867445.<\/p>\n<p>208: Gray SW, Martins Y, Feuerman LZ, Bernhardt BA, Biesecker BB, Christensen KD,<br \/>\nJoffe S, Rini C, Veenstra D, McGuire AL; CSER Consortium Outcomes and Measures<br \/>\nWorking Group. Social and behavioral research in genomic sequencing: approaches<br \/>\nfrom the Clinical Sequencing Exploratory Research Consortium Outcomes and<br \/>\nMeasures Working Group. Genet Med. 2014 Oct;16(10):727-35. doi:<br \/>\n10.1038\/gim.2014.26. Epub 2014 Mar 13. Review. PubMed PMID: 24625446; PubMed<br \/>\nCentral PMCID: PMC4163120.<\/p>\n<p>209: O&#8217;Neill SC, Rini C, Goldsmith RE, Valdimarsdottir H, Cohen LH, Schwartz MD.<br \/>\nDistress among women receiving uninformative BRCA1\/2 results: 12-month outcomes.<br \/>\nPsychooncology. 2009 Oct;18(10):1088-96. doi: 10.1002\/pon.1467. PubMed PMID:<br \/>\n19214961; PubMed Central PMCID: PMC3503506.<\/p>\n<p>210: Morrissey C, Walker RL. The Ethics of General Population Preventive Genomic<br \/>\nSequencing: Rights and Social Justice. J Med Philos. 2018 Jan 12;43(1):22-43.<br \/>\ndoi: 10.1093\/jmp\/jhx034. PubMed PMID: 29342286; PubMed Central PMCID: PMC5901094.<\/p>\n<p>211: Walker RL, Morrissey C. Bioethics methods in the ethical, legal, and social<br \/>\nimplications of the human genome project literature. Bioethics. 2014<br \/>\nNov;28(9):481-90. doi: 10.1111\/bioe.12023. Epub 2013 Jun 24. Review. PubMed PMID:<br \/>\n23796275; PubMed Central PMCID: PMC3785570.<\/p>\n<p>212: Morrissey C, Walker RL. Funding and Forums for ELSI Research: Who (or What)<br \/>\nis Setting the Agenda? AJOB Prim Res. 2012 Jan 1;3(3):51-60. Epub 2012 Jun 19.<br \/>\nPubMed PMID: 22888470; PubMed Central PMCID: PMC3413296.<\/p>\n<p>213: Walker RL, Morrissey C. Charting ELSI&#8217;s future course: lessons from the<br \/>\nrecent past. Genet Med. 2012 Feb;14(2):259-67. doi: 10.1038\/gim.2011.60. Epub<br \/>\n2012 Jan 19. PubMed PMID: 22261758; PubMed Central PMCID: PMC5901958.<\/p>\n<p>214: Lopes-J\u00fanior LC, Carvalho J\u00fanior PM, de Faria Ferraz VE, Nascimento LC, Van<br \/>\nRiper M, Fl\u00f3ria-Santos M. Genetic education, knowledge and experiences between<br \/>\nnurses and physicians in primary care in Brazil: A cross-sectional study. Nurs<br \/>\nHealth Sci. 2017 Mar;19(1):66-74. doi: 10.1111\/nhs.12304. Epub 2016 Aug 11.<br \/>\nPubMed PMID: 27510609.<\/p>\n<p>215: Dressler LG, Deal AM, Patel J, Markey J, Riper MV, McLeod HL. Cancer<br \/>\npharmacogenomics, adoption by oncologists and patient benefit. Per Med. 2014<br \/>\nMar;11(2):143-153. doi: 10.2217\/pme.14.1. PubMed PMID: 29751378.<\/p>\n<p>216: Prows CA, Hopkin RJ, Barnoy S, Van Riper M. An update of childhood genetic<br \/>\ndisorders. J Nurs Scholarsh. 2013 Mar;45(1):34-42. doi: 10.1111\/jnu.12003. Epub<br \/>\n2013 Jan 7. Review. PubMed PMID: 23294802.<\/p>\n<p>217: Choi H, Van Riper M, Thoyre S. Decision making following a prenatal<br \/>\ndiagnosis of Down syndrome: an integrative review. J Midwifery Womens Health.<br \/>\n2012 Mar-Apr;57(2):156-64. doi: 10.1111\/j.1542-2011.2011.00109.x. Epub 2012 Feb<br \/>\n3. Review. PubMed PMID: 22432488.<\/p>\n<p>218: Roederer MW, Van Riper M, Valgus J, Knafl G, McLeod H. Knowledge, attitudes<br \/>\nand education of pharmacists regarding pharmacogenetic testing. Per Med. 2012<br \/>\nJan;9(1):19-27. doi: 10.2217\/pme.11.87. PubMed PMID: 29783293.<\/p>\n<p>219: Dodson C, Van Riper M. Analysis of clinicians&#8217; attitudes towards<br \/>\npharmacogenomics. Per Med. 2011 Sep;8(5):533-540. doi: 10.2217\/pme.11.43. PubMed<br \/>\nPMID: 29793249.<\/p>\n<p>220: Hsiao CY, Van Riper M, Lee SH, Chen SJ, Lin SC. Taiwanese nursing students&#8217;<br \/>\nperceived knowledge and clinical comfort with genetics. J Nurs Scholarsh. 2011<br \/>\nJun;43(2):125-32. doi: 10.1111\/j.1547-5069.2011.01389.x. Epub 2011 Apr 19. PubMed<br \/>\nPMID: 21605316.<\/p>\n<p>221: Cadigan RJ, Easter MM, Dobson AW, Davis AM, Rothschild BB, Zimmer C,<br \/>\nSterling R, Henderson G. &#8220;That&#8217;s a good question&#8221;: university researchers&#8217; views<br \/>\non ownership and retention of human genetic specimens. Genet Med. 2011<br \/>\nJun;13(6):569-75. doi: 10.1097\/GIM.0b013e318211a9c2. PubMed PMID: 21659952;<br \/>\nPubMed Central PMCID: PMC3385643.<\/p>\n<p>222: Michie M, Henderson G, Garrett J, Corbie-Smith G. &#8220;If I could in a small way<br \/>\nhelp&#8221;: motivations for and beliefs about sample donation for genetic research. J<br \/>\nEmpir Res Hum Res Ethics. 2011 Jun;6(2):57-70. doi: 10.1525\/jer.2011.6.2.57.<br \/>\nPubMed PMID: 21680977; PubMed Central PMCID: PMC3313647.<\/p>\n<p>223: Corbie-Smith G, Blumenthal C, Henderson G, Garrett J, Bussey-Jones J,<br \/>\nMoloney M, Sandler RS, Lloyd SW, Dorrance J, Darter J. Studying genetic research<br \/>\nparticipants: lessons from the &#8220;Learning About Research in North Carolina&#8221; study.<br \/>\nCancer Epidemiol Biomarkers Prev. 2008 Aug;17(8):2019-24. doi:<br \/>\n10.1158\/1055-9965.EPI-07-2868. PubMed PMID: 18708393; PubMed Central PMCID:<br \/>\nPMC3037258.<\/p>\n<p>224: Henderson G, Garrett J, Bussey-Jones J, Moloney ME, Blumenthal C,<br \/>\nCorbie-Smith G. Great expectations: views of genetic research participants<br \/>\nregarding current and future genetic studies. Genet Med. 2008 Mar;10(3):193-200.<br \/>\ndoi: 10.1097\/GIM.0b013e318164e4f5. PubMed PMID: 18344709.<\/p>\n<p>225: Sterling R, Henderson GE, Corbie-Smith G. Public willingness to participate<br \/>\nin and public opinions about genetic variation research: a review of the<br \/>\nliterature. Am J Public Health. 2006 Nov;96(11):1971-8. Epub 2006 Oct 3. Review.<br \/>\nPubMed PMID: 17018829; PubMed Central PMCID: PMC1751820.<\/p>\n<p>226: Buchbinder M, Timmermans S. Newborn screening for metabolic disorders:<br \/>\nparental perceptions of the initial communication of results. Clin Pediatr<br \/>\n(Phila). 2012 Aug;51(8):739-44. doi: 10.1177\/0009922812446011. Epub 2012 May 4.<br \/>\nPubMed PMID: 22563060.<\/p>\n<p>227: Timmermans S, Buchbinder M. Expanded newborn screening: articulating the<br \/>\nontology of diseases with bridging work in the clinic. Sociol Health Illn. 2012<br \/>\nFeb;34(2):208-20. doi: 10.1111\/j.1467-9566.2011.01398.x. Epub 2011 Sep 19. PubMed<br \/>\nPMID: 21929648.<\/p>\n<p>228: Buchbinder M, Timmermans S. Newborn screening and maternal diagnosis:<br \/>\nrethinking family benefit. Soc Sci Med. 2011 Oct;73(7):1014-8. doi:<br \/>\n10.1016\/j.socscimed.2011.06.062. Epub 2011 Jul 27. PubMed PMID: 21835525.<\/p>\n<p>229: Buchbinder M, Timmermans S. Medical technologies and the dream of the<br \/>\nperfect newborn. Med Anthropol. 2011 Jan;30(1):56-80. doi:<br \/>\n10.1080\/01459740.2010.531065. PubMed PMID: 21218356.<\/p>\n<p>230: Timmermans S, Buchbinder M. Patients-in-waiting: Living between sickness and<br \/>\nhealth in the genomics era. J Health Soc Behav. 2010 Dec;51(4):408-23. doi:<br \/>\n10.1177\/0022146510386794. PubMed PMID: 21131618.<\/p>\n<p>231: Prince AE. Response to peer commentaries: prevention for those who can pay.<br \/>\nJ Law Biosci. 2016 Feb 6;3(1):202-205. eCollection 2016 Apr. PubMed PMID:<br \/>\n27774243; PubMed Central PMCID: PMC5033441.<\/p>\n<p>232: Prince AE. TANTAMOUNT TO FRAUD?: EXPLORING NON-DISCLOSURE OF GENETIC<br \/>\nINFORMATION IN LIFE INSURANCE APPLICATIONS AS GROUNDS FOR POLICY RESCISSION.<br \/>\nHealth Matrix Clevel. 2016;26:255-307. PubMed PMID: 27263254.<\/p>\n<p>233: Prince AE. Prevention for those who can pay: insurance reimbursement of<br \/>\ngenetic-based preventive interventions in the liminal state between health and<br \/>\ndisease. J Law Biosci. 2015 Jul 1;2(2):365-395. PubMed PMID: 26339500; PubMed<br \/>\nCentral PMCID: PMC4555880.<\/p>\n<p>234: Prince AE. Beyond social media: inadvertent acquisition of genetic<br \/>\ninformation in medical certifications. Am J Bioeth. 2014;14(11):48-50. doi:<br \/>\n10.1080\/15265161.2014.957624. PubMed PMID: 25325812.<\/p>\n<p>235: Prince AE, Berkman BE. When does an illness begin: genetic discrimination<br \/>\nand disease manifestation. J Law Med Ethics. 2012 Fall;40(3):655-64. doi:<br \/>\n10.1111\/j.1748-720X.2012.00696.x. PubMed PMID: 23061591; PubMed Central PMCID:<br \/>\nPMC4142506.<\/p>\n<p>236: Radford C, Prince A, Lewis K, Pal T. Factors which impact the delivery of<br \/>\ngenetic risk assessment services focused on inherited cancer genomics: expanding<br \/>\nthe role and reach of certified genetics professionals. J Genet Couns. 2014<br \/>\nAug;23(4):522-30. doi: 10.1007\/s10897-013-9668-1. Epub 2013 Dec 4. PubMed PMID:<br \/>\n24306140.<\/p>\n<p>237: Allyse M, Michie M. Not-so-incidental findings: the ACMG recommendations on<br \/>\nthe reporting of incidental findings in clinical whole genome and whole exome<br \/>\nsequencing. Trends Biotechnol. 2013 Aug;31(8):439-41. doi:<br \/>\n10.1016\/j.tibtech.2013.04.006. Epub 2013 May 9. PubMed PMID: 23664778; PubMed<br \/>\nCentral PMCID: PMC4086155.<\/p>\n<p>238: L\u00e1zaro-Mu\u00f1oz G. The fiduciary relationship model for managing clinical<br \/>\ngenomic &#8220;incidental&#8221; findings. J Law Med Ethics. 2014 Winter;42(4):576-89. doi:<br \/>\n10.1111\/jlme.12177. PubMed PMID: 25565622; PubMed Central PMCID: PMC4312667.<\/p>\n<p>239: Meagher KM, Lee LM. Integrating Public Health and Deliberative Public<br \/>\nBioethics: Lessons from the Human Genome Project Ethical, Legal, and Social<br \/>\nImplications Program. Public Health Rep. 2016 Jan-Feb;131(1):44-51. PubMed PMID:<br \/>\n26843669; PubMed Central PMCID: PMC4716471.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>1: Roche MI, Griesemer I, Khan CM, Moore E, Lin FC, O&#8217;Daniel JM, Foreman AKM, Lee K, Powell BC, Berg JS, Evans JP, Henderson GE, Rini C. Factors influencing NCGENES research participants&#8217; requests for non-medically actionable secondary findings. Genet Med. 2018 Sep 21. doi: 10.1038\/s41436-018-0294-z. [Epub ahead of print] PubMed PMID: 30237575. 2: Moore EG, &hellip; <a href=\"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/\" aria-label=\"Read more about Most Recent\">Read more<\/a><\/p>\n","protected":false},"author":4284,"featured_media":0,"parent":2281,"menu_order":4,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"layout":"","cellInformation":"","apiCallInformation":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-2493","page","type-page","status-publish","hentry","odd"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Most Recent - ELSI at UNC<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Most Recent - ELSI at UNC\" \/>\n<meta property=\"og:description\" content=\"1: Roche MI, Griesemer I, Khan CM, Moore E, Lin FC, O&#8217;Daniel JM, Foreman AKM, Lee K, Powell BC, Berg JS, Evans JP, Henderson GE, Rini C. Factors influencing NCGENES research participants&#8217; requests for non-medically actionable secondary findings. Genet Med. 2018 Sep 21. doi: 10.1038\/s41436-018-0294-z. [Epub ahead of print] PubMed PMID: 30237575. 2: Moore EG, &hellip; Read more\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/\" \/>\n<meta property=\"og:site_name\" content=\"ELSI at UNC\" \/>\n<meta property=\"article:modified_time\" content=\"2019-10-11T16:45:15+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"48 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/\",\"url\":\"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/\",\"name\":\"Most Recent - ELSI at UNC\",\"isPartOf\":{\"@id\":\"https:\/\/www.med.unc.edu\/elsi\/#website\"},\"datePublished\":\"2018-11-09T19:39:14+00:00\",\"dateModified\":\"2019-10-11T16:45:15+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.med.unc.edu\/elsi\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Private: CEER\",\"item\":\"https:\/\/www.med.unc.edu\/elsi\/?page_id=2847\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Publications\",\"item\":\"https:\/\/www.med.unc.edu\/elsi\/publications\/publications-first_author\/\"},{\"@type\":\"ListItem\",\"position\":4,\"name\":\"Most Recent\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/www.med.unc.edu\/elsi\/#website\",\"url\":\"https:\/\/www.med.unc.edu\/elsi\/\",\"name\":\"ELSI at UNC\",\"description\":\"\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/www.med.unc.edu\/elsi\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Most Recent - ELSI at UNC","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/","og_locale":"en_US","og_type":"article","og_title":"Most Recent - ELSI at UNC","og_description":"1: Roche MI, Griesemer I, Khan CM, Moore E, Lin FC, O&#8217;Daniel JM, Foreman AKM, Lee K, Powell BC, Berg JS, Evans JP, Henderson GE, Rini C. Factors influencing NCGENES research participants&#8217; requests for non-medically actionable secondary findings. Genet Med. 2018 Sep 21. doi: 10.1038\/s41436-018-0294-z. [Epub ahead of print] PubMed PMID: 30237575. 2: Moore EG, &hellip; Read more","og_url":"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/","og_site_name":"ELSI at UNC","article_modified_time":"2019-10-11T16:45:15+00:00","twitter_card":"summary_large_image","twitter_misc":{"Est. reading time":"48 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/","url":"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/","name":"Most Recent - ELSI at UNC","isPartOf":{"@id":"https:\/\/www.med.unc.edu\/elsi\/#website"},"datePublished":"2018-11-09T19:39:14+00:00","dateModified":"2019-10-11T16:45:15+00:00","breadcrumb":{"@id":"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/www.med.unc.edu\/elsi\/ceer\/publications\/publications-most_recent\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.med.unc.edu\/elsi\/"},{"@type":"ListItem","position":2,"name":"Private: CEER","item":"https:\/\/www.med.unc.edu\/elsi\/?page_id=2847"},{"@type":"ListItem","position":3,"name":"Publications","item":"https:\/\/www.med.unc.edu\/elsi\/publications\/publications-first_author\/"},{"@type":"ListItem","position":4,"name":"Most Recent"}]},{"@type":"WebSite","@id":"https:\/\/www.med.unc.edu\/elsi\/#website","url":"https:\/\/www.med.unc.edu\/elsi\/","name":"ELSI at UNC","description":"","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.med.unc.edu\/elsi\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"}]}},"_links_to":[],"_links_to_target":[],"_links":{"self":[{"href":"https:\/\/www.med.unc.edu\/elsi\/wp-json\/wp\/v2\/pages\/2493","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.med.unc.edu\/elsi\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.med.unc.edu\/elsi\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.med.unc.edu\/elsi\/wp-json\/wp\/v2\/users\/4284"}],"replies":[{"embeddable":true,"href":"https:\/\/www.med.unc.edu\/elsi\/wp-json\/wp\/v2\/comments?post=2493"}],"version-history":[{"count":0,"href":"https:\/\/www.med.unc.edu\/elsi\/wp-json\/wp\/v2\/pages\/2493\/revisions"}],"up":[{"embeddable":true,"href":"https:\/\/www.med.unc.edu\/elsi\/wp-json\/wp\/v2\/pages\/2281"}],"wp:attachment":[{"href":"https:\/\/www.med.unc.edu\/elsi\/wp-json\/wp\/v2\/media?parent=2493"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}