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1: Abrams L, Cronister A, Brown WT, Tassone F, Sherman SL, Finucane B,
McConkie-Rosell A, Hagerman R, Kaufmann WE, Picker J, Coffey S, Skinner D,
Johnson V, Miller R, Berry-Kravis E. Newborn, carrier, and early childhood
screening recommendations for fragile X. Pediatrics. 2012 Dec;130(6):1126-35.
doi: 10.1542/peds.2012-0693. Epub 2012 Nov 5. Review. PubMed PMID: 23129072.

2: Adams MC, Evans JP, Henderson GE, Berg JS. The promise and peril of genomic
screening in the general population. Genet Med. 2016 Jun;18(6):593-9. doi:
10.1038/gim.2015.136. Epub 2015 Nov 5. PubMed PMID: 26540154; PubMed Central
PMCID: PMC4860183.

3: Adams MC, Berg JS, Pearlman MD, Vora NL. Look before you leap: genomic
screening in obstetrics and gynecology. Obstet Gynecol. 2015 Jun;125(6):1299-305.
doi: 10.1097/AOG.0000000000000871. PubMed PMID: 26000500.

4: Adams SD, Evans JP, Aylsworth AS. Direct-to-consumer genomic testing offers
little clinical utility but appears to cause minimal harm. N C Med J. 2013
Nov-Dec;74(6):494-8. PubMed PMID: 24316774.

5: Ader T, Susswein LR, Callanan NP, Evans JP. Attitudes and practice of genetic
counselors regarding anonymous testing for BRCA1/2. J Genet Couns. 2009
Dec;18(6):606-17. doi: 10.1007/s10897-009-9250-z. Epub 2009 Oct 2. PubMed PMID:
19798553.

6: Allyse M, Evans JP, Michie M. Dr. Pangloss’s Clinic: Prenatal Whole Genome
Sequencing and a Return to Reality. Am J Bioeth. 2017 Jan;17(1):21-23. PubMed
PMID: 27996895; PubMed Central PMCID: PMC5333773.

7: Allyse M, Michie M. Not-so-incidental findings: the ACMG recommendations on
the reporting of incidental findings in clinical whole genome and whole exome
sequencing. Trends Biotechnol. 2013 Aug;31(8):439-41. doi:
10.1016/j.tibtech.2013.04.006. Epub 2013 May 9. PubMed PMID: 23664778; PubMed
Central PMCID: PMC4086155.

8: Amendola LM, Berg JS, Horowitz CR, Angelo F, Bensen JT, Biesecker BB,
Biesecker LG, Cooper GM, East K, Filipski K, Fullerton SM, Gelb BD, Goddard KAB,
Hailu B, Hart R, Hassmiller-Lich K, Joseph G, Kenny EE, Koenig BA, Knight S, Kwok
PY, Lewis KL, McGuire AL, Norton ME, Ou J, Parsons DW, Powell BC, Risch N,
Robinson M, Rini C, Scollon S, Slavotinek AM, Veenstra DL, Wasserstein MP,
Wilfond BS, Hindorff LA; CSER consortium, Plon SE, Jarvik GP. The Clinical
Sequencing Evidence-Generating Research Consortium: Integrating Genomic
Sequencing in Diverse and Medically Underserved Populations. Am J Hum Genet. 2018
Sep 6;103(3):319-327. doi: 10.1016/j.ajhg.2018.08.007. PubMed PMID: 30193136;
PubMed Central PMCID: PMC6128306.

9: Amendola LM, Robinson JO, Hart R, Biswas S, Lee K, Bernhardt BA, East K,
Gilmore MJ, Kauffman TL, Lewis KL, Roche M, Scollon S, Wynn J, Blout C. Why
Patients Decline Genomic Sequencing Studies: Experiences from the CSER
Consortium. J Genet Couns. 2018 Sep;27(5):1220-1227. doi:
10.1007/s10897-018-0243-7. Epub 2018 Mar 1. PubMed PMID: 29497922; PubMed Central
PMCID: PMC6119550.

10: Amendola LM, Dorschner MO, Robertson PD, Salama JS, Hart R, Shirts BH, Murray
ML, Tokita MJ, Gallego CJ, Kim DS, Bennett JT, Crosslin DR, Ranchalis J, Jones
KL, Rosenthal EA, Jarvik ER, Itsara A, Turner EH, Herman DS, Schleit J, Burt A,
Jamal SM, Abrudan JL, Johnson AD, Conlin LK, Dulik MC, Santani A, Metterville DR,
Kelly M, Foreman AK, Lee K, Taylor KD, Guo X, Crooks K, Kiedrowski LA, Raffel LJ,
Gordon O, Machini K, Desnick RJ, Biesecker LG, Lubitz SA, Mulchandani S, Cooper
GM, Joffe S, Richards CS, Yang Y, Rotter JI, Rich SS, O’Donnell CJ, Berg JS,
Spinner NB, Evans JP, Fullerton SM, Leppig KA, Bennett RL, Bird T, Sybert VP,
Grady WM, Tabor HK, Kim JH, Bamshad MJ, Wilfond B, Motulsky AG, Scott CR,
Pritchard CC, Walsh TD, Burke W, Raskind WH, Byers P, Hisama FM, Rehm H,
Nickerson DA, Jarvik GP. Actionable exomic incidental findings in 6503
participants: challenges of variant classification. Genome Res. 2015
Mar;25(3):305-15. doi: 10.1101/gr.183483.114. Epub 2015 Jan 30. PubMed PMID:
25637381; PubMed Central PMCID: PMC4352885.

11: Bailey DB Jr, Berry-Kravis E, Gane LW, Guarda S, Hagerman R, Powell CM,
Tassone F, Wheeler A. Fragile X Newborn Screening: Lessons Learned From a
Multisite Screening Study. Pediatrics. 2017 Jun;139(Suppl 3):S216-S225. doi:
10.1542/peds.2016-1159H. PubMed PMID: 28814542.

12: Bailey DB Jr, Wheeler A, Berry-Kravis E, Hagerman R, Tassone F, Powell CM,
Roche M, Gane LW, Sideris J. Maternal Consequences of the Detection of Fragile X
Carriers in Newborn Screening. Pediatrics. 2015 Aug;136(2):e433-40. doi:
10.1542/peds.2015-0414. Epub 2015 Jul 13. PubMed PMID: 26169437; PubMed Central
PMCID: PMC4516945.

13: Bailey DB Jr, Lewis MA, Harris SL, Grant T, Bann C, Bishop E, Roche M, Guarda
S, Barnum L, Powell C, Therrell BL Jr. Design and evaluation of a decision aid
for inviting parents to participate in a fragile X newborn screening pilot study.
J Genet Couns. 2013 Feb;22(1):108-17. doi: 10.1007/s10897-012-9511-0. Epub 2012
Jun 27. PubMed PMID: 22736213.

14: Bailey DB Jr, Bann C, Bishop E, Guarda S, Barnum L, Roche M. Can a decision
aid enable informed decisions in neonatal nursery recruitment for a fragile X
newborn screening study? Genet Med. 2013 Apr;15(4):299-306. doi:
10.1038/gim.2012.135. Epub 2012 Oct 25. PubMed PMID: 23100013.

15: Bailey DB Jr, Skinner D, Roche MI, Powell C. Emerging dilemmas in newborn
screening. Virtual Mentor. 2009 Sep 1;11(9):709-13. doi:
10.1001/virtualmentor.2009.11.9.pfor2-0909. PubMed PMID: 23199468.

16: Bailey DB Jr, Armstrong FD, Kemper AR, Skinner D, Warren SF. Supporting
family adaptation to presymptomatic and “untreatable” conditions in an era of
expanded newborn screening. J Pediatr Psychol. 2009 Jul;34(6):648-61. doi:
10.1093/jpepsy/jsn032. Epub 2008 Mar 30. PubMed PMID: 18378512; PubMed Central
PMCID: PMC2722102.

17: Bailey DB Jr, Skinner D, Davis AM, Whitmarsh I, Powell C. Ethical, legal, and
social concerns about expanded newborn screening: fragile X syndrome as a
prototype for emerging issues. Pediatrics. 2008 Mar;121(3):e693-704. doi:
10.1542/peds.2007-0820. Review. PubMed PMID: 18310190.

18: Bailey DB Jr, Beskow LM, Davis AM, Skinner D. Changing perspectives on the
benefits of newborn screening. Ment Retard Dev Disabil Res Rev. 2006;12(4):270-9.
PubMed PMID: 17183569.

19: Berg JS. Exploring the importance of case-level clinical information for
variant interpretation. Genet Med. 2017 Jan;19(1):3-5. doi: 10.1038/gim.2016.106.
Epub 2016 Aug 25. PubMed PMID: 27561084; PubMed Central PMCID: PMC5225022.

20: Berg JS, Agrawal PB, Bailey DB Jr, Beggs AH, Brenner SE, Brower AM, Cakici
JA, Ceyhan-Birsoy O, Chan K, Chen F, Currier RJ, Dukhovny D, Green RC, Harris-Wai
J, Holm IA, Iglesias B, Joseph G, Kingsmore SF, Koenig BA, Kwok PY, Lantos J,
Leeder SJ, Lewis MA, McGuire AL, Milko LV, Mooney SD, Parad RB, Pereira S,
Petrikin J, Powell BC, Powell CM, Puck JM, Rehm HL, Risch N, Roche M, Shieh JT,
Veeraraghavan N, Watson MS, Willig L, Yu TW, Urv T, Wise AL. Newborn Sequencing
in Genomic Medicine and Public Health. Pediatrics. 2017 Feb;139(2). pii:
e20162252. doi: 10.1542/peds.2016-2252. Epub 2017 Jan 17. PubMed PMID: 28096516;
PubMed Central PMCID: PMC5260149.

21: Berg JS, Foreman AK, O’Daniel JM, Booker JK, Boshe L, Carey T, Crooks KR,
Jensen BC, Juengst ET, Lee K, Nelson DK, Powell BC, Powell CM, Roche MI, Skrzynia
C, Strande NT, Weck KE, Wilhelmsen KC, Evans JP. A semiquantitative metric for
evaluating clinical actionability of incidental or secondary findings from
genome-scale sequencing. Genet Med. 2016 May;18(5):467-75. doi:
10.1038/gim.2015.104. Epub 2015 Aug 13. PubMed PMID: 26270767; PubMed Central
PMCID: PMC4752935.

22: Berg JS, Powell CM. Potential Uses and Inherent Challenges of Using
Genome-Scale Sequencing to Augment Current Newborn Screening. Cold Spring Harb
Perspect Med. 2015 Oct 5;5(12). pii: a023150. doi: 10.1101/cshperspect.a023150.
Review. PubMed PMID: 26438605; PubMed Central PMCID: PMC4665041.

23: Berg JS. Genome-scale sequencing in clinical care: establishing molecular
diagnoses and measuring value. JAMA. 2014 Nov 12;312(18):1865-7. doi:
10.1001/jama.2014.14665. PubMed PMID: 25326641.

24: Berg JS, Amendola LM, Eng C, Van Allen E, Gray SW, Wagle N, Rehm HL, DeChene
ET, Dulik MC, Hisama FM, Burke W, Spinner NB, Garraway L, Green RC, Plon S, Evans
JP, Jarvik GP; Members of the CSER Actionability and Return of Results Working
Group. Processes and preliminary outputs for identification of actionable genes
as incidental findings in genomic sequence data in the Clinical Sequencing
Exploratory Research Consortium. Genet Med. 2013 Nov;15(11):860-7. doi:
10.1038/gim.2013.133. Epub 2013 Oct 24. Review. Erratum in: Genet Med. 2014
Feb;16(2):203. PubMed PMID: 24195999; PubMed Central PMCID: PMC3935342.

25: Berg JS, Khoury MJ, Evans JP. Deploying whole genome sequencing in clinical
practice and public health: meeting the challenge one bin at a time. Genet Med.
2011 Jun;13(6):499-504. doi: 10.1097/GIM.0b013e318220aaba. PubMed PMID: 21558861.

26: Berg JS, French SL, McCullough LB, Kleppe S, Sutton VR, Gunn SK, Karaviti LP.
Ethical and legal implications of genetic testing in androgen insensitivity
syndrome. J Pediatr. 2007 Apr;150(4):434-8. PubMed PMID: 17382127.

27: Bernhardt BA, Roche MI, Perry DL, Scollon SR, Tomlinson AN, Skinner D.
Experiences with obtaining informed consent for genomic sequencing. Am J Med
Genet A. 2015 Nov;167A(11):2635-46. doi: 10.1002/ajmg.a.37256. Epub 2015 Jul 21.
PubMed PMID: 26198374; PubMed Central PMCID: PMC4980577.

28: Beskow LM, Fullerton SM, Namey EE, Nelson DK, Davis AM, Wilfond BS.
Recommendations for ethical approaches to genotype-driven research recruitment.
Hum Genet. 2012 Sep;131(9):1423-31. doi: 10.1007/s00439-012-1177-z. Epub 2012 May
24. PubMed PMID: 22622788; PubMed Central PMCID: PMC3686635.

29: Beskow LM, Namey EE, Miller PR, Nelson DK, Cooper A. IRB chairs’ perspectives
on genotype-driven research recruitment. IRB. 2012 May-Jun;34(3):1-10. PubMed
PMID: 22830177; PubMed Central PMCID: PMC3632007.

30: Beskow LM, Namey EE, Cadigan RJ, Brazg T, Crouch J, Henderson GE, Michie M,
Nelson DK, Tabor HK, Wilfond BS. Research participants’ perspectives on
genotype-driven research recruitment. J Empir Res Hum Res Ethics. 2011
Dec;6(4):3-20. doi: 10.1525/jer.2011.6.4.3. PubMed PMID: 22228056; PubMed Central
PMCID: PMC3395316.

31: Botkin JR, Belmont JW, Berg JS, Berkman BE, Bombard Y, Holm IA, Levy HP,
Ormond KE, Saal HM, Spinner NB, Wilfond BS, McInerney JD. Points to Consider:
Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and
Adolescents. Am J Hum Genet. 2015 Jul 2;97(1):6-21. doi:
10.1016/j.ajhg.2015.05.022. Review. Erratum in: Am J Hum Genet. 2015 Sep
3;97(3):501. PubMed PMID: 26140447; PubMed Central PMCID: PMC4570999.

32: Boyer GJ, Whipple W, Cadigan RJ, Henderson GE. Biobanks in the United States:
how to identify an undefined and rapidly evolving population. Biopreserv Biobank.
2012 Dec;10(6):511-7. doi: 10.1089/bio.2012.0034. PubMed PMID: 24845137; PubMed
Central PMCID: PMC4076972.

33: Brnich SE, Rivera-Muñoz EA, Berg JS. Quantifying the potential of functional
evidence to reclassify variants of uncertain significance in the categorical and
Bayesian interpretation frameworks. Hum Mutat. 2018 Nov;39(11):1531-1541. doi:
10.1002/humu.23609. Epub 2018 Sep 5. PubMed PMID: 30095857.

34: Buchbinder M, Timmermans S. Newborn screening for metabolic disorders:
parental perceptions of the initial communication of results. Clin Pediatr
(Phila). 2012 Aug;51(8):739-44. doi: 10.1177/0009922812446011. Epub 2012 May 4.
PubMed PMID: 22563060.

35: Buchbinder M, Timmermans S. Newborn screening and maternal diagnosis:
rethinking family benefit. Soc Sci Med. 2011 Oct;73(7):1014-8. doi:
10.1016/j.socscimed.2011.06.062. Epub 2011 Jul 27. PubMed PMID: 21835525.

36: Buchbinder M, Timmermans S. Medical technologies and the dream of the perfect
newborn. Med Anthropol. 2011 Jan;30(1):56-80. doi: 10.1080/01459740.2010.531065.
PubMed PMID: 21218356.

37: Burke W, Appelbaum P, Dame L, Marshall P, Press N, Pyeritz R, Sharp R,
Juengst E. The translational potential of research on the ethical, legal, and
social implications of genomics. Genet Med. 2015 Jan;17(1):12-20. doi:
10.1038/gim.2014.74. Epub 2014 Jun 19. Review. PubMed PMID: 24946153; PubMed
Central PMCID: PMC4272334.

38: Burke W, Antommaria AH, Bennett R, Botkin J, Clayton EW, Henderson GE, Holm
IA, Jarvik GP, Khoury MJ, Knoppers BM, Press NA, Ross LF, Rothstein MA, Saal H,
Uhlmann WR, Wilfond B, Wolf SM, Zimmern R. Recommendations for returning genomic
incidental findings? We need to talk! Genet Med. 2013 Nov;15(11):854-9. doi:
10.1038/gim.2013.113. Epub 2013 Aug 1. Review. PubMed PMID: 23907645; PubMed
Central PMCID: PMC3832423.

39: Burke W, Tarini B, Press NA, Evans JP. Genetic screening. Epidemiol Rev.
2011;33:148-64. doi: 10.1093/epirev/mxr008. Epub 2011 Jun 27. Review. PubMed
PMID: 21709145; PubMed Central PMCID: PMC3166195.

40: Bush LW, Beck AE, Biesecker LG, Evans JP, Hamosh A, Holm IA, Martin CL,
Richards CS, Rehm HL. Professional responsibilities regarding the provision,
publication, and dissemination of patient phenotypes in the context of clinical
genetic and genomic testing: points to consider-a statement of the American
College of Medical Genetics and Genomics (ACMG). Genet Med. 2018
Feb;20(2):169-171. doi: 10.1038/gim.2017.242. Epub 2018 Jan 11. PubMed PMID:
29323668; PubMed Central PMCID: PMC5931217.

41: Butterfield RM, Evans JP, Rini C, Kuczynski KJ, Waltz M, Cadigan RJ, Goddard
KAB, Muessig KR, Henderson GE. Returning negative results to individuals in a
genomic screening program: lessons learned. Genet Med. 2018 Jun 6. doi:
10.1038/s41436-018-0061-1. [Epub ahead of print] PubMed PMID: 29875426.

42: Cadigan RJ, Edwards TP, Lassiter D, Davis AM, Henderson GE.
“Forward-Thinking” in U.S. Biobanking. Genet Test Mol Biomarkers. 2017
Mar;21(3):148-154. doi: 10.1089/gtmb.2016.0393. Epub 2017 Jan 24. PubMed PMID:
28118036; PubMed Central PMCID: PMC5367905.

43: Cadigan RJ, Butterfield R, Rini C, Waltz M, Kuczynski KJ, Muessig K, Goddard
KAB, Henderson GE. Online Education and e-Consent for GeneScreen, a Preventive
Genomic Screening Study. Public Health Genomics. 2017;20(4):235-246. doi:
10.1159/000481359. Epub 2017 Oct 26. PubMed PMID: 29069655; PubMed Central PMCID:
PMC5698149.

44: Cadigan RJ, Nelson DK, Henderson GE, Nelson AG, Davis AM. Public Comments on
Proposed Regulatory Reforms That Would Impact Biospecimen Research: The Good, the
Bad, and the Puzzling. IRB. 2015 Sep-Oct;37(5):1-10. PubMed PMID: 26523321.

45: Cadigan RJ, Lassiter D, Haldeman K, Conlon I, Reavely E, Henderson GE.
Neglected ethical issues in biobank management: Results from a U.S. study. Life
Sci Soc Policy. 2013 Dec 1;9(1):1. PubMed PMID: 25401081; PubMed Central PMCID:
PMC4228790.

46: Cadigan RJ, Easter MM, Dobson AW, Davis AM, Rothschild BB, Zimmer C, Sterling
R, Henderson G. “That’s a good question”: university researchers’ views on
ownership and retention of human genetic specimens. Genet Med. 2011
Jun;13(6):569-75. doi: 10.1097/GIM.0b013e318211a9c2. PubMed PMID: 21659952;
PubMed Central PMCID: PMC3385643.

47: Cadigan RJ, Michie M, Henderson G, Davis AM, Beskow LM. The meaning of
genetic research results: reflections from individuals with and without a known
genetic disorder. J Empir Res Hum Res Ethics. 2011 Dec;6(4):30-40. doi:
10.1525/jer.2011.6.4.30. PubMed PMID: 22228058; PubMed Central PMCID: PMC3386306.

48: Callier SL, Huss J, Juengst ET. GINA and preemployment criminal background
checks. Hastings Cent Rep. 2010 Jan-Feb;40(1):15-9. PubMed PMID: 20169652; PubMed
Central PMCID: PMC3380532.

49: Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, Danilczyk U, Diaz
CM, Fryer-Edwards K, Green SK, Hodosh MA, Juengst ET, Kaye J, Kedes L, Knoppers
BM, Lemmens T, Meslin EM, Murphy J, Nussbaum RL, Otlowski M, Pullman D, Ray PN,
Sugarman J, Timmons M. Research ethics recommendations for whole-genome research:
consensus statement. PLoS Biol. 2008 Mar 25;6(3):e73. doi:
10.1371/journal.pbio.0060073. PubMed PMID: 18366258; PubMed Central PMCID:
PMC2270329.

50: Choi H, Van Riper M, Thoyre S. Decision making following a prenatal diagnosis
of Down syndrome: an integrative review. J Midwifery Womens Health. 2012
Mar-Apr;57(2):156-64. doi: 10.1111/j.1542-2011.2011.00109.x. Epub 2012 Feb 3.
Review. PubMed PMID: 22432488.

51: Choudhury S, Fishman JR, McGowan ML, Juengst ET. Big data, open science and
the brain: lessons learned from genomics. Front Hum Neurosci. 2014 May 16;8:239.
doi: 10.3389/fnhum.2014.00239. eCollection 2014. Review. PubMed PMID: 24904347;
PubMed Central PMCID: PMC4032989.

52: Christensen KD, Bernhardt BA, Jarvik GP, Hindorff LA, Ou J, Biswas S, Powell
BC, Grundmeier RW, Machini K, Karavite DJ, Pennington JW, Krantz ID, Berg JS,
Goddard KAB. Anticipated responses of early adopter genetic specialists and
nongenetic specialists to unsolicited genomic secondary findings. Genet Med. 2018
Feb 1. doi: 10.1038/gim.2017.243. [Epub ahead of print] PubMed PMID: 29388940;
PubMed Central PMCID: PMC6103906.

53: Churchill LR, King NM, Henderson GE. Why we should continue to worry about
the therapeutic misconception. J Clin Ethics. 2013 Winter;24(4):381-6. PubMed
PMID: 24597426.

54: Clayton EW, McCullough LB, Biesecker LG, Joffe S, Ross LF, Wolf SM; Clinical
Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group.
Addressing the ethical challenges in genetic testing and sequencing of children.
Am J Bioeth. 2014;14(3):3-9. doi: 10.1080/15265161.2013.879945. PubMed PMID:
24592828; PubMed Central PMCID: PMC3950962.

55: Cohn EG, Henderson GE, Appelbaum PS. Distributive justice, diversity, and
inclusion in precision medicine: what will success look like? Genet Med. 2017
Feb;19(2):157-159. doi: 10.1038/gim.2016.92. Epub 2016 Aug 4. Erratum in: Genet
Med. 2016 Nov;18(11):1166. PubMed PMID: 27490116; PubMed Central PMCID:
PMC5291806.

56: Conley JM, Lázaro-Muñoz G, Prince AE, Davis AM, Cadigan RJ. Scientific Social
Responsibility: Lessons From the Corporate Social Responsibility Movement. Am J
Bioeth. 2015;15(12):64-6. doi: 10.1080/15265161.2015.1103812. PubMed PMID:
26632370; PubMed Central PMCID: PMC4751582.

57: Conley JM, Cook-Deegan R, Lázaro-Muñoz G. MYRIAD AFTER MYRIAD: THE
PROPRIETARY DATA DILEMMA. N C J Law Technol. 2014 Jun;15(4):597-637. PubMed PMID:
25544836; PubMed Central PMCID: PMC4275833.

58: Conley JM, Mitchell R, Cadigan RJ, Davis AM, Dobson AW, Gladden RQ. A trade
secret model for genomic biobanking. J Law Med Ethics. 2012 Fall;40(3):612-29.
doi: 10.1111/j.1748-720X.2012.00694.x. PubMed PMID: 23061589; PubMed Central
PMCID: PMC3476050.

59: Conley JM, Doerr AK, Vorhaus DB. Enabling responsible public genomics. Health
Matrix Clevel. 2010;20(2):325-85. PubMed PMID: 21243847.

60: Cook-Deegan R, Conley JM, Evans JP, Vorhaus D. The next controversy in
genetic testing: clinical data as trade secrets? Eur J Hum Genet. 2013
Jun;21(6):585-8. doi: 10.1038/ejhg.2012.217. Epub 2012 Nov 14. PubMed PMID:
23150081; PubMed Central PMCID: PMC3658186.

61: Coors ME, Glover JJ, Juengst ET, Sikela JM. The ethics of using transgenic
non-human primates to study what makes us human. Nat Rev Genet. 2010
Sep;11(9):658-62. doi: 10.1038/nrg2864. Review. PubMed PMID: 20717156; PubMed
Central PMCID: PMC2995325.

62: Corbie-Smith G, Blumenthal C, Henderson G, Garrett J, Bussey-Jones J, Moloney
M, Sandler RS, Lloyd SW, Dorrance J, Darter J. Studying genetic research
participants: lessons from the “Learning About Research in North Carolina” study.
Cancer Epidemiol Biomarkers Prev. 2008 Aug;17(8):2019-24. doi:
10.1158/1055-9965.EPI-07-2868. PubMed PMID: 18708393; PubMed Central PMCID:
PMC3037258.

63: Dobson AW, Evans JP. Gene patents in the US–focusing on what really matters.
Genome Biol. 2012 Jun 29;13(6):161. doi: 10.1186/gb-2012-13-6-161. PubMed PMID:
22748211; PubMed Central PMCID: PMC3446309.

64: Dodson C, Van Riper M. Analysis of clinicians’ attitudes towards
pharmacogenomics. Per Med. 2011 Sep;8(5):533-540. doi: 10.2217/pme.11.43. PubMed
PMID: 29793249.

65: Dressler LG, Deal AM, Patel J, Markey J, Riper MV, McLeod HL. Cancer
pharmacogenomics, adoption by oncologists and patient benefit. Per Med. 2014
Mar;11(2):143-153. doi: 10.2217/pme.14.1. PubMed PMID: 29751378.

66: Dressler LG, Smolek S, Ponsaran R, Markey JM, Starks H, Gerson N, Lewis S,
Press N, Juengst E, Wiesner GL; GRRIP Consortium. IRB perspectives on the return
of individual results from genomic research. Genet Med. 2012 Feb;14(2):215-22.
doi: 10.1038/gim.2011.10. Epub 2012 Jan 5. PubMed PMID: 22241094; PubMed Central
PMCID: PMC3493147.

67: Dreyfuss R, Evans JP. From Bilski back to Benson: preemption, inventing
around, and the case of genetic diagnostics. Stanford Law Rev. 2011
Jun;63(6):1349-76. PubMed PMID: 21774194.

68: Edwards T, Cadigan RJ, Evans JP, Henderson GE. Biobanks containing clinical
specimens: defining characteristics, policies, and practices. Clin Biochem. 2014
Mar;47(4-5):245-51. doi: 10.1016/j.clinbiochem.2013.11.023. Epub 2013 Dec 15.
PubMed PMID: 24345347; PubMed Central PMCID: PMC3959281.

69: Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Working
Group. The EGAPP initiative: lessons learned. Genet Med. 2014 Mar;16(3):217-24.
doi: 10.1038/gim.2013.110. Epub 2013 Aug 8. Review. PubMed PMID: 23928914.

70: Evans JP, Powell BC, Berg JS. Finding the Rare Pathogenic Variants in a Human
Genome. JAMA. 2017 May 9;317(18):1904-1905. doi: 10.1001/jama.2017.0432. PubMed
PMID: 28492888.

71: Evans JP. (Mis)understanding Science: The Problem with Scientific
Breakthroughs. Hastings Cent Rep. 2016 Sep;46(5):11-3. doi: 10.1002/hast.611.
PubMed PMID: 27649823.

72: Evans JP, Watson MS. Genetic testing and FDA regulation: overregulation
threatens the emergence of genomic medicine. JAMA. 2015 Feb 17;313(7):669-70.
doi: 10.1001/jama.2014.18145. PubMed PMID: 25560537.

73: Evans JP. Finding common ground. Genet Med. 2013 Nov;15(11):852-3. doi:
10.1038/gim.2013.150. Epub 2013 Oct 17. PubMed PMID: 24136615.

74: Evans JP, Berg JS, Olshan AF, Magnuson T, Rimer BK. We screen newborns, don’t
we?: realizing the promise of public health genomics. Genet Med. 2013
May;15(5):332-4. doi: 10.1038/gim.2013.11. Epub 2013 Mar 7. Review. PubMed PMID:
23470837; PubMed Central PMCID: PMC4789099.

75: Evans JP. Return of results to the families of children in genomic
sequencing: tallying risks and benefits. Genet Med. 2013 Jun;15(6):435-6. doi:
10.1038/gim.2013.54. PubMed PMID: 23739673.

76: Evans JP. When is a medical finding “incidental”? Genet Med. 2013
Jul;15(7):515-6. doi: 10.1038/gim.2013.74. Epub 2013 May 30. PubMed PMID:
23722872.

77: Evans JP, Khoury MJ. The arrival of genomic medicine to the clinic is only
the beginning of the journey. Genet Med. 2013 Apr;15(4):268-9. doi:
10.1038/gim.2012.133. Epub 2013 Jan 10. PubMed PMID: 23306801; PubMed Central
PMCID: PMC4693143.

78: Evans JP, Rothschild BB. Return of results: not that complicated? Genet Med.
2012 Apr;14(4):358-60. doi: 10.1038/gim.2012.8. PubMed PMID: 22481183.

79: Evans JP. That personal touch. Hastings Cent Rep. 2011 May-Jun;41(3):5-6.
PubMed PMID: 21678801.

80: Evans JP. Looking ahead, looking behind. Introduction. Genet Med. 2011
Mar;13(3):177-8. doi: 10.1097/GIM.0b013e318210b0a7. PubMed PMID: 21346480.

81: Evans JP, Meslin EM, Marteau TM, Caulfield T. Genomics. Deflating the genomic
bubble. Science. 2011 Feb 18;331(6019):861-2. doi: 10.1126/science.1198039.
PubMed PMID: 21330519.

82: Evans JP, Berg JS. Next-generation DNA sequencing, regulation, and the limits
of paternalism: the next challenge. JAMA. 2011 Dec 7;306(21):2376-7. doi:
10.1001/jama.2011.1788. PubMed PMID: 22147382.

83: Evans JP, Dale DC, Fomous C. Preparing for a consumer-driven genomic age. N
Engl J Med. 2010 Sep 16;363(12):1099-103. doi: 10.1056/NEJMp1006202. Epub 2010
Aug 18. PubMed PMID: 20843241.

84: Evans JP, Burke W, Khoury M. The rules remain the same for genomic medicine:
the case against “reverse genetic exceptionalism”. Genet Med. 2010
Jun;12(6):342-3. doi: 10.1097/GIM.0b013e3181deb308. PubMed PMID: 20556868.

85: Evans JP. The Human Genome Project at 10 years: a teachable moment. Genet
Med. 2010 Aug;12(8):477. doi: 10.1097/GIM.0b013e3181ef16b6. PubMed PMID:
20703139.

86: Evans JP. Putting patients before patents. Genet Med. 2010 Apr;12(4):204-5.
doi: 10.1097/GIM.0b013e3181d74c1c. PubMed PMID: 20395743.

87: Evans JP. The Origin. Genet Med. 2009 Nov;11(11):776-7. doi:
10.1097/GIM.0b013e3181c03a17. PubMed PMID: 19938246.

88: Evans JP. The voyage continues: Darwin and medicine at 200 years. JAMA. 2009
Feb 11;301(6):663-5. doi: 10.1001/jama.2009.102. PubMed PMID: 19211473.

89: Evans JP, Green RC. Direct to consumer genetic testing: Avoiding a culture
war. Genet Med. 2009 Aug;11(8):568-9. doi: 10.1097/GIM.0b013e3181afbaed. PubMed
PMID: 19606051; PubMed Central PMCID: PMC2920210.

90: Evans JP. Recreational genomics; what’s in it for you? Genet Med. 2008
Oct;10(10):709-10. doi: 10.1097/GIM.0b013e3181859959. PubMed PMID: 18813136;
PubMed Central PMCID: PMC2672622.

91: Evans JP, Burke W. Genetic exceptionalism. Too much of a good thing? Genet
Med. 2008 Jul;10(7):500-1. doi: 10.1097GIM.0b013e31817f280a. PubMed PMID:
18580684.

92: Evans JP. Health care in the age of genetic medicine. Genet Med. 2008
Jan;10(1):1-3. doi: 10.1097/GIM.0b013e318164c669. Review. PubMed PMID: 18197050.

93: Evans JP. A future for medical genetics: lessons from Catch 22. Genet Med.
2007 Jan;9(1):1-3. PubMed PMID: 17224683.

94: Evans JP. Celebrating the birthday of our intellectual common ancestor. Genet
Med. 2007 Feb;9(2):63-4. PubMed PMID: 17304045.

95: Evans JP. Health care in the age of genetic medicine. JAMA. 2007 Dec
12;298(22):2670-2. PubMed PMID: 18073364.

96: Facio FM, Lee K, O’Daniel JM. A genetic counselor’s guide to using
next-generation sequencing in clinical practice. J Genet Couns. 2014
Aug;23(4):455-62. doi: 10.1007/s10897-013-9662-7. Epub 2013 Oct 24. PubMed PMID:
24151055.

97: Foreman AK, Lee K, Evans JP. The NCGENES project: exploring the new world of
genome sequencing. N C Med J. 2013 Nov-Dec;74(6):500-4. PubMed PMID: 24316776.

98: Gaines AD, Juengst ET. Origin myths in Bioethics: constructing sources,
motives and reason in Bioethic(s). Cult Med Psychiatry. 2008 Sep;32(3):303-27.
doi: 10.1007/s11013-008-9105-3. PubMed PMID: 18574678.

99: Goddard KA, Whitlock EP, Berg JS, Williams MS, Webber EM, Webster JA, Lin JS,
Schrader KA, Campos-Outcalt D, Offit K, Feigelson HS, Hollombe C. Description and
pilot results from a novel method for evaluating return of incidental findings
from next-generation sequencing technologies. Genet Med. 2013 Sep;15(9):721-8.
doi: 10.1038/gim.2013.37. Epub 2013 Apr 4. PubMed PMID: 23558254; PubMed Central
PMCID: PMC3927794.

100: Gray SW, Martins Y, Feuerman LZ, Bernhardt BA, Biesecker BB, Christensen KD,
Joffe S, Rini C, Veenstra D, McGuire AL; CSER Consortium Outcomes and Measures
Working Group. Social and behavioral research in genomic sequencing: approaches
from the Clinical Sequencing Exploratory Research Consortium Outcomes and
Measures Working Group. Genet Med. 2014 Oct;16(10):727-35. doi:
10.1038/gim.2014.26. Epub 2014 Mar 13. Review. PubMed PMID: 24625446; PubMed
Central PMCID: PMC4163120.

101: Green RC, Berg JS, Grody WW, Kalia SS, Korf BR, Martin CL, McGuire AL,
Nussbaum RL, O’Daniel JM, Ormond KE, Rehm HL, Watson MS, Williams MS, Biesecker
LG. CORRIGENDUM: ACMG recommendations for reporting of incidental findings in
clinical exome and genome sequencing. Genet Med. 2017 May;19(5):606. doi:
10.1038/gim.2017.18. PubMed PMID: 28492529.

102: Green RC, Goddard KA, Jarvik GP, Amendola LM, Appelbaum PS, Berg JS,
Bernhardt BA, Biesecker LG, Biswas S, Blout CL, Bowling KM, Brothers KB, Burke W,
Caga-Anan CF, Chinnaiyan AM, Chung WK, Clayton EW, Cooper GM, East K, Evans JP,
Fullerton SM, Garraway LA, Garrett JR, Gray SW, Henderson GE, Hindorff LA, Holm
IA, Lewis MH, Hutter CM, Janne PA, Joffe S, Kaufman D, Knoppers BM, Koenig BA,
Krantz ID, Manolio TA, McCullough L, McEwen J, McGuire A, Muzny D, Myers RM,
Nickerson DA, Ou J, Parsons DW, Petersen GM, Plon SE, Rehm HL, Roberts JS,
Robinson D, Salama JS, Scollon S, Sharp RR, Shirts B, Spinner NB, Tabor HK,
Tarczy-Hornoch P, Veenstra DL, Wagle N, Weck K, Wilfond BS, Wilhelmsen K, Wolf
SM, Wynn J, Yu JH; CSER Consortium. Clinical Sequencing Exploratory Research
Consortium: Accelerating Evidence-Based Practice of Genomic Medicine. Am J Hum
Genet. 2016 Jul 7;99(1):246. doi: 10.1016/j.ajhg.2016.06.002. PubMed PMID:
27392080; PubMed Central PMCID: PMC5005464.

103: Green RC, Berg JS, Grody WW, Kalia SS, Korf BR, Martin CL, McGuire AL,
Nussbaum RL, O’Daniel JM, Ormond KE, Rehm HL, Watson MS, Williams MS, Biesecker
LG; American College of Medical Genetics and Genomics. ACMG recommendations for
reporting of incidental findings in clinical exome and genome sequencing. Genet
Med. 2013 Jul;15(7):565-74. doi: 10.1038/gim.2013.73. Epub 2013 Jun 20. Erratum
in: Genet Med. 2017 May;19(5):606. PubMed PMID: 23788249; PubMed Central PMCID:
PMC3727274.

104: Green RC, Berg JS, Berry GT, Biesecker LG, Dimmock DP, Evans JP, Grody WW,
Hegde MR, Kalia S, Korf BR, Krantz I, McGuire AL, Miller DT, Murray MF, Nussbaum
RL, Plon SE, Rehm HL, Jacob HJ. Exploring concordance and discordance for return
of incidental findings from clinical sequencing. Genet Med. 2012
Apr;14(4):405-10. doi: 10.1038/gim.2012.21. Epub 2012 Mar 15. PubMed PMID:
22422049; PubMed Central PMCID: PMC3763716.

105: Grosse SD, McBride CM, Evans JP, Khoury MJ. Personal utility and genomic
information: look before you leap. Genet Med. 2009 Aug;11(8):575-6. doi:
10.1097/GIM.0b013e3181af0a80. PubMed PMID: 19623080; PubMed Central PMCID:
PMC3417335.

106: Haase R, Michie M, Skinner D. Flexible positions, managed hopes: the
promissory bioeconomy of a whole genome sequencing cancer study. Soc Sci Med.
2015 Apr;130:146-53. doi: 10.1016/j.socscimed.2015.02.016. Epub 2015 Feb 13.
PubMed PMID: 25697637; PubMed Central PMCID: PMC4363274.

107: Haga SB, Rosanbalm KD, Boles L, Tindall GM, Livingston TM, O’Daniel JM.
Promoting public awareness and engagement in genome sciences. J Genet Couns. 2013
Aug;22(4):508-16. doi: 10.1007/s10897-013-9577-3. Epub 2013 Feb 23. PubMed PMID:
23435715; PubMed Central PMCID: PMC3688701.

108: Haga SB, Tindall G, O’Daniel JM. Public perspectives about pharmacogenetic
testing and managing ancillary findings. Genet Test Mol Biomarkers. 2012
Mar;16(3):193-7. doi: 10.1089/gtmb.2011.0118. Epub 2011 Nov 2. PubMed PMID:
22047505; PubMed Central PMCID: PMC3306589.

109: Haga SB, Tindall G, O’Daniel JM. Professional perspectives about
pharmacogenetic testing and managing ancillary findings. Genet Test Mol
Biomarkers. 2012 Jan;16(1):21-4. doi: 10.1089/gtmb.2011.0045. Epub 2011 Jul 19.
PubMed PMID: 21770772; PubMed Central PMCID: PMC3265769.

110: Haga SB, O’Daniel JM, Tindall GM, Lipkus IR, Agans R. Public attitudes
toward ancillary information revealed by pharmacogenetic testing under limited
information conditions. Genet Med. 2011 Aug;13(8):723-8. doi:
10.1097/GIM.0b013e31821afcc0. PubMed PMID: 21633294; PubMed Central PMCID:
PMC3150617.

111: Haga SB, Carrig MM, O’Daniel JM, Orlando LA, Killeya-Jones LA, Ginsburg GS,
Cho A. Genomic risk profiling: attitudes and use in personal and clinical care of
primary care physicians who offer risk profiling. J Gen Intern Med. 2011
Aug;26(8):834-40. doi: 10.1007/s11606-011-1651-7. Epub 2011 Feb 11. PubMed PMID:
21311998; PubMed Central PMCID: PMC3138989.

112: Hart MR, Biesecker BB, Blout CL, Christensen KD, Amendola LM, Bergstrom KL,
Biswas S, Bowling KM, Brothers KB, Conlin LK, Cooper GM, Dulik MC, East KM,
Everett JN, Finnila CR, Ghazani AA, Gilmore MJ, Goddard KAB, Jarvik GP, Johnston
JJ, Kauffman TL, Kelley WV, Krier JB, Lewis KL, McGuire AL, McMullen C, Ou J,
Plon SE, Rehm HL, Richards CS, Romasko EJ, Miren Sagardia A, Spinner NB, Thompson
ML, Turbitt E, Vassy JL, Wilfond BS, Veenstra DL, Berg JS, Green RC, Biesecker
LG, Hindorff LA. Secondary findings from clinical genomic sequencing: prevalence,
patient perspectives, family history assessment, and health-care costs from a
multisite study. Genet Med. 2018 Oct 5. doi: 10.1038/s41436-018-0308-x. [Epub
ahead of print] PubMed PMID: 30287922.

113: Haskell GT, Adams MC, Fan Z, Amin K, Guzman Badillo RJ, Zhou L, Bizon C,
Chahin N, Greenwood RS, Milko LV, Shiloh-Malawsky Y, Crooks KR, Strande N,
Tennison M, Tilley CR, Brandt A, Wilhelmsen KC, Weck K, Evans JP, Berg JS.
Diagnostic utility of exome sequencing in the evaluation of neuromuscular
disorders. Neurol Genet. 2018 Feb 1;4(1):e212. doi: 10.1212/NXG.0000000000000212.
eCollection 2018 Feb. PubMed PMID: 29417091; PubMed Central PMCID: PMC5798313.

114: Henderson G, Garrett J, Bussey-Jones J, Moloney ME, Blumenthal C,
Corbie-Smith G. Great expectations: views of genetic research participants
regarding current and future genetic studies. Genet Med. 2008 Mar;10(3):193-200.
doi: 10.1097/GIM.0b013e318164e4f5. PubMed PMID: 18344709.

115: Henderson GE. With great (participant) rights comes great (researcher)
responsibility. Genet Med. 2016 Feb;18(2):124-5. doi: 10.1038/gim.2015.67. Epub
2015 May 7. PubMed PMID: 25950735.

116: Henderson GE, Wolf SM, Kuczynski KJ, Joffe S, Sharp RR, Parsons DW, Knoppers
BM, Yu JH, Appelbaum PS. The challenge of informed consent and return of results
in translational genomics: empirical analysis and recommendations. J Law Med
Ethics. 2014 Fall;42(3):344-55. doi: 10.1111/jlme.12151. PubMed PMID: 25264092;
PubMed Central PMCID: PMC4262925.

117: Henderson GE, Edwards TP, Cadigan RJ, Davis AM, Zimmer C, Conlon I, Weiner
BJ. Stewardship practices of U.S. biobanks. Sci Transl Med. 2013 Dec
11;5(215):215cm7. doi: 10.1126/scitranslmed.3007362. PubMed PMID: 24337477;
PubMed Central PMCID: PMC4185188.

118: Henderson GE, Cadigan RJ, Edwards TP, Conlon I, Nelson AG, Evans JP, Davis
AM, Zimmer C, Weiner BJ. Characterizing biobank organizations in the U.S.:
results from a national survey. Genome Med. 2013 Jan 25;5(1):3. doi:
10.1186/gm407. eCollection 2013. PubMed PMID: 23351549; PubMed Central PMCID:
PMC3706795.

119: Henderson GE, Juengst ET, King NM, Kuczynski K, Michie M. What research
ethics should learn from genomics and society research: lessons from the ELSI
Congress of 2011. J Law Med Ethics. 2012 Winter;40(4):1008-24. doi:
10.1111/j.1748-720X.2012.00728.x. PubMed PMID: 23289702; PubMed Central PMCID:
PMC4103651.

120: Henderson GE. Is informed consent broken? Am J Med Sci. 2011
Oct;342(4):267-72. doi: 10.1097/MAJ.0b013e31822a6c47. Review. PubMed PMID:
21817873.

121: Henderson GE, Churchill LR, Davis AM, Easter MM, Grady C, Joffe S, Kass N,
King NM, Lidz CW, Miller FG, Nelson DK, Peppercorn J, Rothschild BB, Sankar P,
Wilfond BS, Zimmer CR. Clinical trials and medical care: defining the therapeutic
misconception. PLoS Med. 2007 Nov 27;4(11):e324. PubMed PMID: 18044980; PubMed
Central PMCID: PMC2082641.

122: Himes P, Kauffman TL, Muessig KR, Amendola LM, Berg JS, Dorschner MO,
Gilmore M, Nickerson DA, Reiss JA, Richards CS, Rope AF, Simpson DK, Wilfond BS,
Jarvik GP, Goddard KAB. Genome sequencing and carrier testing: decisions on
categorization and whether to disclose results of carrier testing. Genet Med.
2017 Jul;19(7):803-808. doi: 10.1038/gim.2016.198. Epub 2017 Jan 12. PubMed PMID:
28079899; PubMed Central PMCID: PMC5509491.

123: Holm IA, Savage SK, Green RC, Juengst E, McGuire A, Kornetsky S, Brewster
SJ, Joffe S, Taylor P. Guidelines for return of research results from pediatric
genomic studies: deliberations of the Boston Children’s Hospital Gene Partnership
Informed Cohort Oversight Board. Genet Med. 2014 Jul;16(7):547-52. doi:
10.1038/gim.2013.190. Epub 2014 Jan 9. PubMed PMID: 24406460.

124: Hsiao CY, Van Riper M, Lee SH, Chen SJ, Lin SC. Taiwanese nursing students’
perceived knowledge and clinical comfort with genetics. J Nurs Scholarsh. 2011
Jun;43(2):125-32. doi: 10.1111/j.1547-5069.2011.01389.x. Epub 2011 Apr 19. PubMed
PMID: 21605316.

125: Hunter JE, Irving SA, Biesecker LG, Buchanan A, Jensen B, Lee K, Martin CL,
Milko L, Muessig K, Niehaus AD, O’Daniel J, Piper MA, Ramos EM, Schully SD, Scott
AF, Slavotinek A, Sobreira N, Strande N, Weaver M, Webber EM, Williams MS, Berg
JS, Evans JP, Goddard KA. A standardized, evidence-based protocol to assess
clinical actionability of genetic disorders associated with genomic variation.
Genet Med. 2016 Dec;18(12):1258-1268. doi: 10.1038/gim.2016.40. Epub 2016 Apr 28.
PubMed PMID: 27124788; PubMed Central PMCID: PMC5085884.

126: Isler MR, Sutton K, Cadigan RJ, Corbie-Smith G. Community perceptions of
genomic research: implications for addressing health disparities. N C Med J. 2013
Nov-Dec;74(6):470-6. PubMed PMID: 24316767.

127: Janssens AC, Evans JP. Returning pharmacogenetic secondary findings from
genome sequencing: let’s not put the cart before the horse. Genet Med. 2015
Nov;17(11):854-6. doi: 10.1038/gim.2015.59. Epub 2015 May 7. PubMed PMID:
25950734.

128: 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. Return of genomic results to
research participants: the floor, the ceiling, and the choices in between. Am J
Hum Genet. 2014 Jun 5;94(6):818-26. doi: 10.1016/j.ajhg.2014.04.009. Epub 2014
May 8. PubMed PMID: 24814192; PubMed Central PMCID: PMC4121476.

129: Johnston J, Juengst E. Are Parents Really Obligated to Learn as Much as
Possible about Their Children’s Genomes? Hastings Cent Rep. 2018 Jul;48 Suppl
2:S14-S15. doi: 10.1002/hast.877. PubMed PMID: 30133729.

130: Juengst E, McGowan ML, Fishman JR, Settersten RA Jr. From “Personalized” to
“Precision” Medicine: The Ethical and Social Implications of Rhetorical Reform in
Genomic Medicine. Hastings Cent Rep. 2016 Sep;46(5):21-33. doi: 10.1002/hast.614.
PubMed PMID: 27649826; PubMed Central PMCID: PMC5153661.

131: Juengst ET, McGowan ML. Why Does the Shift from “Personalized Medicine” to
“Precision Health” and “Wellness Genomics” Matter? AMA J Ethics. 2018 Sep
1;20(9):E881-890. doi: 10.1001/amajethics.2018.881. PubMed PMID: 30242820.

132: Juengst ET. Crowdsourcing the Moral Limits of Human Gene Editing? Hastings
Cent Rep. 2017 May;47(3):15-23. doi: 10.1002/hast.701. PubMed PMID: 28543411.

133: Juengst ET, Fishman JR, McGowan ML, Settersten RA Jr. Serving epigenetics
before its time. Trends Genet. 2014 Oct;30(10):427-9. doi:
10.1016/j.tig.2014.08.001. PubMed PMID: 25242336.

134: Juengst ET. TMI! ethical challenges in managing and using large patient data
sets. N C Med J. 2014 May-Jun;75(3):214-7. PubMed PMID: 24830499.

135: Juengst ET, Flatt MA, Settersten RA Jr. Personalized genomic medicine and
the rhetoric of empowerment. Hastings Cent Rep. 2012 Sep-Oct;42(5):34-40. doi:
10.1002/hast.65. PubMed PMID: 22976411; PubMed Central PMCID: PMC3641662.

136: Juengst ET, Settersten RA Jr, Fishman JR, McGowan ML. After the revolution?
Ethical and social challenges in ‘personalized genomic medicine’. Per Med. 2012
Jun 1;9(4):429-439. PubMed PMID: 23662108; PubMed Central PMCID: PMC3646379.

137: Kalia SS, Adelman K, Bale SJ, Chung WK, Eng C, Evans JP, Herman GE, Hufnagel
SB, Klein TE, Korf BR, McKelvey KD, Ormond KE, Richards CS, Vlangos CN, Watson M,
Martin CL, Miller DT. Recommendations for reporting of secondary findings in
clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): a policy
statement of the American College of Medical Genetics and Genomics. Genet Med.
2017 Feb;19(2):249-255. doi: 10.1038/gim.2016.190. Epub 2016 Nov 17. Erratum in:
Genet Med. 2017 Apr;19(4):484. PubMed PMID: 27854360.

138: Kaye J, Terry SF, Juengst E, Coy S, Harris JR, Chalmers D, Dove ES,
Budin-Ljøsne I, Adebamowo C, Ogbe E, Bezuidenhout L, Morrison M, Minion JT,
Murtagh MJ, Minari J, Teare H, Isasi R, Kato K, Rial-Sebbag E, Marshall P, Koenig
B, Cambon-Thomsen A. Including all voices in international data-sharing
governance. Hum Genomics. 2018 Mar 7;12(1):13. doi: 10.1186/s40246-018-0143-9.
PubMed PMID: 29514717; PubMed Central PMCID: PMC5842530.

139: Kaye J, Meslin EM, Knoppers BM, Juengst ET, Deschênes M, Cambon-Thomsen A,
Chalmers D, De Vries J, Edwards K, Hoppe N, Kent A, Adebamowo C, Marshall P, Kato
K. Research priorities. ELSI 2.0 for genomics and society. Science. 2012 May
11;336(6082):673-4. doi: 10.1126/science.1218015. PubMed PMID: 22582247; PubMed
Central PMCID: PMC4151290.

140: Khan CM, Moore EG, Leos C, Rini C. Patient hopes for diagnostic genomic
sequencing: roles of uncertainty and social status. Eur J Hum Genet. 2016
Jun;24(6):803-8. doi: 10.1038/ejhg.2015.204. Epub 2015 Sep 23. PubMed PMID:
26395557; PubMed Central PMCID: PMC4867445.

141: Khan CM, Rini C, Bernhardt BA, Roberts JS, Christensen KD, Evans JP,
Brothers KB, Roche MI, Berg JS, Henderson GE. Erratum to: How can psychological
science inform research about genetic counseling for clinical genomic sequencing?
J Genet Couns. 2015 Apr;24(2):372. doi: 10.1007/s10897-014-9814-4. PubMed PMID:
25539761.

142: Khan CM, Rini C, Bernhardt BA, Roberts JS, Christensen KD, Evans JP,
Brothers KB, Roche MI, Berg JS, Henderson GE. How can psychological science
inform research about genetic counseling for clinical genomic sequencing? J Genet
Couns. 2015 Apr;24(2):193-204. doi: 10.1007/s10897-014-9804-6. Epub 2014 Dec 9.
Erratum in: J Genet Couns. 2015 Apr;24(2):372. PubMed PMID: 25488723; PubMed
Central PMCID: PMC4777349.

143: Khoury MJ, Evans JP. A public health perspective on a national precision
medicine cohort: balancing long-term knowledge generation with early health
benefit. JAMA. 2015 Jun 2;313(21):2117-8. doi: 10.1001/jama.2015.3382. PubMed
PMID: 26034952; PubMed Central PMCID: PMC4685667.

144: Khoury MJ, Bowen MS, Burke W, Coates RJ, Dowling NF, Evans JP, Reyes M, St
Pierre J. Current priorities for public health practice in addressing the role of
human genomics in improving population health. Am J Prev Med. 2011
Apr;40(4):486-93. doi: 10.1016/j.amepre.2010.12.009. PubMed PMID: 21406285;
PubMed Central PMCID: PMC5624316.

145: Khoury MJ, Coates RJ, Evans JP. Evidence-based classification of
recommendations on use of genomic tests in clinical practice: dealing with
insufficient evidence. Genet Med. 2010 Nov;12(11):680-3. doi:
10.1097/GIM.0b013e3181f9ad55. PubMed PMID: 20975567.

146: Krantz MS, Berg JS. Crowdsourcing to define the clinical actionability of
incidental findings of genetic testing. N C Med J. 2013 Nov-Dec;74(6):501-2.
PubMed PMID: 24316777.

147: Langer MM, Roche MI, Brewer NT, Berg JS, Khan CM, Leos C, Moore E, Brown M,
Rini C. Development and Validation of a Genomic Knowledge Scale to Advance
Informed Decision Making Research in Genomic Sequencing. MDM Policy Pract. 2017
Jan-Jun;2(1). doi: 10.1177/2381468317692582. Epub 2017 Feb 1. PubMed PMID:
29928697; PubMed Central PMCID: PMC6005662.

148: Lee K, Berg JS, Milko L, Crooks K, Lu M, Bizon C, Owen P, Wilhelmsen KC,
Weck KE, Evans JP, Garg S. High Diagnostic Yield of Whole Exome Sequencing in
Participants With Retinal Dystrophies in a Clinical Ophthalmology Setting. Am J
Ophthalmol. 2015 Aug;160(2):354-363.e9. doi: 10.1016/j.ajo.2015.04.026. Epub 2015
Apr 22. PubMed PMID: 25910913; PubMed Central PMCID: PMC4506879.

149: Leo MC, McMullen C, Wilfond BS, Lynch FL, Reiss JA, Gilmore MJ, Himes P,
Kauffman TL, Davis JV, Jarvik GP, Berg JS, Harding C, Kennedy KA, Simpson DK,
Quigley DI, Richards CS, Rope AF, Goddard KA. Patients’ ratings of genetic
conditions validate a taxonomy to simplify decisions about preconception carrier
screening via genome sequencing. Am J Med Genet A. 2016 Mar;170(3):574-82. doi:
10.1002/ajmg.a.37477. Epub 2016 Jan 21. PubMed PMID: 26792268; PubMed Central
PMCID: PMC4824299.

150: Lewis MA, Stine A, Paquin RS, Mansfield C, Wood D, Rini C, Roche MI, Powell
CM, Berg JS, Bailey DB Jr. Parental preferences toward genomic sequencing for
non-medically actionable conditions in children: a discrete-choice experiment.
Genet Med. 2018 Feb;20(2):181-189. doi: 10.1038/gim.2017.93. Epub 2017 Aug 3.
PubMed PMID: 28771249; PubMed Central PMCID: PMC5868968.

151: Lewis MA, Paquin RS, Roche MI, Furberg RD, Rini C, Berg JS, Powell CM,
Bailey DB Jr. Supporting Parental Decisions About Genomic Sequencing for Newborn
Screening: The NC NEXUS Decision Aid. Pediatrics. 2016 Jan;137 Suppl 1:S16-23.
doi: 10.1542/peds.2015-3731E. PubMed PMID: 26729698; PubMed Central PMCID:
PMC4922487.

152: Long MD, Cadigan RJ, Cook SF, Haldeman K, Kuczynski K, Sandler RS, Martin
CF, Chen W, Kappelman MD. Perceptions of patients with inflammatory bowel
diseases on biobanking. Inflamm Bowel Dis. 2015 Jan;21(1):132-8. doi:
10.1097/MIB.0000000000000263. PubMed PMID: 25489961; PubMed Central PMCID:
PMC4573563.

153: Lopes-Júnior LC, Carvalho Júnior PM, de Faria Ferraz VE, Nascimento LC, Van
Riper M, Flória-Santos M. Genetic education, knowledge and experiences between
nurses and physicians in primary care in Brazil: A cross-sectional study. Nurs
Health Sci. 2017 Mar;19(1):66-74. doi: 10.1111/nhs.12304. Epub 2016 Aug 11.
PubMed PMID: 27510609.

154: Lázaro-Muñoz G, Conley JM, Davis AM, Prince AE, Cadigan RJ. Which Results to
Return: Subjective Judgments in Selecting Medically Actionable Genes. Genet Test
Mol Biomarkers. 2017 Mar;21(3):184-194. doi: 10.1089/gtmb.2016.0397. Epub 2017
Feb 1. PubMed PMID: 28146641; PubMed Central PMCID: PMC5367906.

155: Lázaro-Muñoz G, Juengst ET. CHALLENGES FOR IMPLEMENTING A PTSD PREVENTIVE
GENOMIC SEQUENCING PROGRAM IN THE U.S. MILITARY. Case West Reserve J Int Law.
2015 Spring;47(1):87-113. PubMed PMID: 26401056; PubMed Central PMCID:
PMC4577019.

156: Lázaro-Muñoz G, Conley JM, Davis AM, Van Riper M, Walker RL, Juengst ET.
Response to Open Peer Commentaries on “Looking for Trouble: Preventive Genomic
Sequencing in the General Population and the Role of Patient Choice”. Am J
Bioeth. 2015;15(12):W6-9. doi: 10.1080/15265161.2015.1096069. PubMed PMID:
26632375.

157: Lázaro-Muñoz G, Conley JM, Davis AM, Van Riper M, Walker RL, Juengst ET.
Looking for Trouble: Preventive Genomic Sequencing in the General Population and
the Role of Patient Choice. Am J Bioeth. 2015;15(7):3-14. doi:
10.1080/15265161.2015.1039721. PubMed PMID: 26147254; PubMed Central PMCID:
PMC4493927.

158: Lázaro-Muñoz G. The fiduciary relationship model for managing clinical
genomic “incidental” findings. J Law Med Ethics. 2014 Winter;42(4):576-89. doi:
10.1111/jlme.12177. PubMed PMID: 25565622; PubMed Central PMCID: PMC4312667.

159: May T, Strong KA, Zusevics KL, Jeruzal J, Farrell MH, LaPean Kirschner A,
Derse AR, Evans JP, Grotevant HD. Does Lack of “Genetic-Relative Family Health
History” Represent a Potentially Avoidable Health Disparity for Adoptees? Am J
Bioeth. 2016 Dec;16(12):33-38. PubMed PMID: 27901440.

160: May T, Evans JP, Strong KA, Zusevics KL, Derse AR, Jeruzal J, LaPean
Kirschner A, Farrell MH, Grotevant HD. Issues of “Cost, Capabilities, and Scope”
in Characterizing Adoptees’ Lack of “Genetic-Relative Family Health History” as
an Avoidable Health Disparity: Response to Open Peer Commentaries on “Does Lack
of ‘Genetic-Relative Family Health History’ Represent a Potentially Avoidable
Health Disparity for Adoptees?” Am J Bioeth. 2016 Dec;16(12):W4-W8. PubMed PMID:
27901431.

161: May T, Strong KA, Khoury MJ, Evans JP. Can targeted genetic testing offer
useful health information to adoptees? Genet Med. 2015 Jul;17(7):533-5. doi:
10.1038/gim.2015.58. Epub 2015 Apr 23. PubMed PMID: 25905442; PubMed Central
PMCID: PMC4701205.

162: McGlaughon JL, Goldstein JL, Thaxton C, Hemphill SE, Berg JS. The
progression of the ClinGen gene clinical validity classification over time. Hum
Mutat. 2018 Nov;39(11):1494-1504. doi: 10.1002/humu.23604. PubMed PMID: 30311372;
PubMed Central PMCID: PMC6190678.

163: McGowan ML, Settersten RA Jr, Juengst ET, Fishman JR. Integrating genomics
into clinical oncology: ethical and social challenges from proponents of
personalized medicine. Urol Oncol. 2014 Feb;32(2):187-92. doi:
10.1016/j.urolonc.2013.10.009. PubMed PMID: 24445286; PubMed Central PMCID:
PMC3900115.

164: McGowan ML, Fishman JR, Settersten RA Jr, Lambrix MA, Juengst ET.
Gatekeepers or intermediaries? The role of clinicians in commercial genomic
testing. PLoS One. 2014 Sep 26;9(9):e108484. doi: 10.1371/journal.pone.0108484.
eCollection 2014. PubMed PMID: 25259512; PubMed Central PMCID: PMC4178171.

165: McGuire AL, McCullough LB, Evans JP. The indispensable role of professional
judgment in genomic medicine. JAMA. 2013 Apr 10;309(14):1465-6. doi:
10.1001/jama.2013.1438. PubMed PMID: 23571582; PubMed Central PMCID: PMC3760691.

166: Meagher KM, Berg JS. Too much of a good thing? Overdiagnosis, or
overestimating risk in preventive genomic screening. Per Med. 2018
Sep;15(5):343-346. doi: 10.2217/pme-2018-0041. Epub 2018 Sep 27. PubMed PMID:
30260288.

167: Meagher KM, Juengst ET, Henderson GE. Grudging Trust and the Limits of
Trustworthy Biorepository Curation. Am J Bioeth. 2018 Apr;18(4):23-25. doi:
10.1080/15265161.2018.1431329. PubMed PMID: 29621446; PubMed Central PMCID:
PMC6192541.

168: Meagher KM, McGowan ML, Settersten RA Jr, Fishman JR, Juengst ET. Precisely
Where Are We Going? Charting the New Terrain of Precision Prevention. Annu Rev
Genomics Hum Genet. 2017 Aug 31;18:369-387. doi:
10.1146/annurev-genom-091416-035222. Epub 2017 Apr 24. Review. PubMed PMID:
28441061; PubMed Central PMCID: PMC6203331.

169: Meagher KM, Lee LM. Integrating Public Health and Deliberative Public
Bioethics: Lessons from the Human Genome Project Ethical, Legal, and Social
Implications Program. Public Health Rep. 2016 Jan-Feb;131(1):44-51. PubMed PMID:
26843669; PubMed Central PMCID: PMC4716471.

170: Mehlman MJ, Berg JW, Juengst ET, Kodish E. Ethical and legal issues in
enhancement research on human subjects. Camb Q Healthc Ethics. 2011
Jan;20(1):30-45. doi: 10.1017/S0963180110000605. PubMed PMID: 21223608.

171: Michie M, Cadigan RJ, Henderson G, Beskow LM. Am I a control?:
Genotype-driven research recruitment and self-understandings of study
participants. Genet Med. 2012 Dec;14(12):983-9. doi: 10.1038/gim.2012.88. Epub
2012 Aug 30. PubMed PMID: 22935717; PubMed Central PMCID: PMC3578310.

172: Michie M, Henderson G, Garrett J, Corbie-Smith G. “If I could in a small way
help”: motivations for and beliefs about sample donation for genetic research. J
Empir Res Hum Res Ethics. 2011 Jun;6(2):57-70. doi: 10.1525/jer.2011.6.2.57.
PubMed PMID: 21680977; PubMed Central PMCID: PMC3313647.

173: Milko LV, Funke BH, Hershberger RE, Azzariti DR, Lee K, Riggs ER,
Rivera-Munoz EA, Weaver MA, Niehaus A, Currey EL, Craigen WJ, Mao R, Offit K,
Steiner RD, Martin CL, Rehm HL, Watson MS, Ramos EM, Plon SE, Berg JS.
Development of Clinical Domain Working Groups for the Clinical Genome Resource
(ClinGen): lessons learned and plans for the future. Genet Med. 2018 Sep 5. doi:
10.1038/s41436-018-0267-2. [Epub ahead of print] PubMed PMID: 30181607.

174: Milko LV, Rini C, Lewis MA, Butterfield RM, Lin FC, Paquin RS, Powell BC,
Roche MI, Souris KJ, Bailey DB Jr, Berg JS, Powell CM. Evaluating parents’
decisions about next-generation sequencing for their child in the NC NEXUS (North
Carolina Newborn Exome Sequencing for Universal Screening) study: a randomized
controlled trial protocol. Trials. 2018 Jun 28;19(1):344. doi:
10.1186/s13063-018-2686-4. PubMed PMID: 29950170; PubMed Central PMCID:
PMC6022715.

175: Mitchell R, Conley JM, Davis AM, Cadigan RJ, Dobson AW, Gladden RQ.
Genomics. Genomics, biobanks, and the trade-secret model. Science. 2011 Apr
15;332(6027):309-10. doi: 10.1126/science.1199554. PubMed PMID: 21493846.

176: Mollison L, Berg JS. Genetic screening: birthright or earned with age?
Expert Rev Mol Diagn. 2017 Aug;17(8):735-738. doi: 10.1080/14737159.2017.1346473.
Epub 2017 Jun 29. PubMed PMID: 28641021; PubMed Central PMCID: PMC6086349.

177: Moore EG, Roche M, Rini C, Corty EW, Girnary Z, O’Daniel JM, Lin FC,
Corbie-Smith G, Evans JP, Henderson GE, Berg JS. Examining the Cascade of
Participant Attrition in a Genomic Medicine Research Study: Barriers and
Facilitators to Achieving Diversity. Public Health Genomics. 2017;20(6):332-342.
doi: 10.1159/000490519. Epub 2018 Aug 7. PubMed PMID: 30086550; PubMed Central
PMCID: PMC6112240.

178: Morrissey C, Walker RL. The Ethics of General Population Preventive Genomic
Sequencing: Rights and Social Justice. J Med Philos. 2018 Jan 12;43(1):22-43.
doi: 10.1093/jmp/jhx034. PubMed PMID: 29342286; PubMed Central PMCID: PMC5901094.

179: Morrissey C, Walker RL. Funding and Forums for ELSI Research: Who (or What)
is Setting the Agenda? AJOB Prim Res. 2012 Jan 1;3(3):51-60. Epub 2012 Jun 19.
PubMed PMID: 22888470; PubMed Central PMCID: PMC3413296.

180: O’Daniel JM, McLaughlin HM, Amendola LM, Bale SJ, Berg JS, Bick D, Bowling
KM, Chao EC, Chung WK, Conlin LK, Cooper GM, Das S, Deignan JL, Dorschner MO,
Evans JP, Ghazani AA, Goddard KA, Gornick M, Farwell Hagman KD, Hambuch T, Hegde
M, Hindorff LA, Holm IA, Jarvik GP, Knight Johnson A, Mighion L, Morra M, Plon
SE, Punj S, Richards CS, Santani A, Shirts BH, Spinner NB, Tang S, Weck KE, Wolf
SM, Yang Y, Rehm HL. A survey of current practices for genomic sequencing test
interpretation and reporting processes in US laboratories. Genet Med. 2017
May;19(5):575-582. doi: 10.1038/gim.2016.152. Epub 2016 Nov 3. PubMed PMID:
27811861; PubMed Central PMCID: PMC5415437.

181: O’Daniel JM, Berg JS. A missing link in the bench-to-bedside paradigm:
engaging regulatory stakeholders in clinical genomics research. Genome Med. 2016
Sep 21;8(1):95. PubMed PMID: 27655359; PubMed Central PMCID: PMC5031300.

182: O’Daniel JM, Lee K. Whole-genome and whole-exome sequencing in hereditary
cancer: impact on genetic testing and counseling. Cancer J. 2012
Jul-Aug;18(4):287-92. doi: 10.1097/PPO.0b013e318262467e. Review. PubMed PMID:
22846728.

183: O’Daniel JM, Rosanbalm KD, Boles L, Tindall GM, Livingston TM, Haga SB.
Enhancing geneticists’ perspectives of the public through community engagement.
Genet Med. 2012 Feb;14(2):243-9. doi: 10.1038/gim.2011.29. Epub 2012 Jan 19.
PubMed PMID: 22241095.

184: O’Daniel JM. The prospect of genome-guided preventive medicine: a need and
opportunity for genetic counselors. J Genet Couns. 2010 Aug;19(4):315-27. doi:
10.1007/s10897-010-9302-4. Epub 2010 May 4. PubMed PMID: 20440545.

185: O’Daniel JM, Haga SB, Willard HF. Considerations for the impact of personal
genome information: a study of genomic profiling among genetics and genomics
professionals. J Genet Couns. 2010 Aug;19(4):387-401. doi:
10.1007/s10897-010-9297-x. Epub 2010 Mar 30. PubMed PMID: 20352309.

186: O’Neill SC, Rini C, Goldsmith RE, Valdimarsdottir H, Cohen LH, Schwartz MD.
Distress among women receiving uninformative BRCA1/2 results: 12-month outcomes.
Psychooncology. 2009 Oct;18(10):1088-96. doi: 10.1002/pon.1467. PubMed PMID:
19214961; PubMed Central PMCID: PMC3503506.

187: Ormond KE, Hallquist MLG, Buchanan AH, Dondanville D, Cho MK, Smith M, Roche
M, Brothers KB, Coughlin CR 2nd, Hercher L, Hudgins L, Jamal S, Levy HP, Raskin
M, Stosic M, Uhlmann W, Wain KE, Currey E, Faucett WA. Developing a conceptual,
reproducible, rubric-based approach to consent and result disclosure for genetic
testing by clinicians with minimal genetics background. Genet Med. 2018 Jul 6.
doi: 10.1038/s41436-018-0093-6. [Epub ahead of print] PubMed PMID: 29976988.

188: Porter KM, Kauffman TL, Koenig BA, Lewis KL, Rehm HL, Richards CS, Strande
NT, Tabor HK, Wolf SM, Yang Y, Amendola LM, Azzariti DR, Berg JS, Bergstrom K,
Biesecker LG, Biswas S, Bowling KM, Chung WK, Clayton EW, Conlin LK, Cooper GM,
Dulik MC, Garraway LA, Ghazani AA, Green RC, Hiatt SM, Jamal SM, Jarvik GP,
Goddard KAB, Wilfond BS; members of the CSER Actionability and Return of Results
Working Group. Approaches to carrier testing and results disclosure in
translational genomics research: The clinical sequencing exploratory research
consortium experience. Mol Genet Genomic Med. 2018 Aug 21. doi: 10.1002/mgg3.453.
[Epub ahead of print] PubMed PMID: 30133189.

189: Powell CM. What Genomic Sequencing Can Offer Universal Newborn Screening
Programs. Hastings Cent Rep. 2018 Jul;48 Suppl 2:S18-S19. doi: 10.1002/hast.878.
PubMed PMID: 30133725.

190: Prince AE, Cadigan RJ, Henderson GE, Evans JP, Adams M, Coker-Schwimmer E,
Penn DC, Van Riper M, Corbie-Smith G, Jonas DE. Is there evidence that we should
screen the general population for Lynch syndrome with genetic testing? A
systematic review. Pharmgenomics Pers Med. 2017 Feb 20;10:49-60. doi:
10.2147/PGPM.S123808. eCollection 2017. Review. PubMed PMID: 28260941; PubMed
Central PMCID: PMC5325104.

191: Prince AE. Response to peer commentaries: prevention for those who can pay.
J Law Biosci. 2016 Feb 6;3(1):202-205. eCollection 2016 Apr. PubMed PMID:
27774243; PubMed Central PMCID: PMC5033441.

192: Prince AE. TANTAMOUNT TO FRAUD?: EXPLORING NON-DISCLOSURE OF GENETIC
INFORMATION IN LIFE INSURANCE APPLICATIONS AS GROUNDS FOR POLICY RESCISSION.
Health Matrix Clevel. 2016;26:255-307. PubMed PMID: 27263254.

193: Prince AE, Conley JM, Davis AM, Lázaro-Muñoz G, Cadigan RJ. Automatic
Placement of Genomic Research Results in Medical Records: Do Researchers Have a
Duty? Should Participants Have a Choice? J Law Med Ethics. 2015
Winter;43(4):827-42. doi: 10.1111/jlme.12323. PubMed PMID: 26711421; PubMed
Central PMCID: PMC4780406.

194: Prince AE, Berg JS, Evans JP, Jonas DE, Henderson G. Genomic screening of
the general adult population: key concepts for assessing net benefit with
systematic evidence reviews. Genet Med. 2015 Jun;17(6):441-3. doi:
10.1038/gim.2014.129. Epub 2014 Sep 18. Review. PubMed PMID: 25232850; PubMed
Central PMCID: PMC4387105.

195: Prince AE. Prevention for those who can pay: insurance reimbursement of
genetic-based preventive interventions in the liminal state between health and
disease. J Law Biosci. 2015 Jul 1;2(2):365-395. PubMed PMID: 26339500; PubMed
Central PMCID: PMC4555880.

196: Prince AE, Roche MI. Genetic information, non-discrimination, and privacy
protections in genetic counseling practice. J Genet Couns. 2014
Dec;23(6):891-902. doi: 10.1007/s10897-014-9743-2. Epub 2014 Jul 27. PubMed PMID:
25063358; PubMed Central PMCID: PMC4233176.

197: Prince AE. Beyond social media: inadvertent acquisition of genetic
information in medical certifications. Am J Bioeth. 2014;14(11):48-50. doi:
10.1080/15265161.2014.957624. PubMed PMID: 25325812.

198: Prince AE, Berkman BE. When does an illness begin: genetic discrimination
and disease manifestation. J Law Med Ethics. 2012 Fall;40(3):655-64. doi:
10.1111/j.1748-720X.2012.00696.x. PubMed PMID: 23061591; PubMed Central PMCID:
PMC4142506.

199: Prows CA, Hopkin RJ, Barnoy S, Van Riper M. An update of childhood genetic
disorders. J Nurs Scholarsh. 2013 Mar;45(1):34-42. doi: 10.1111/jnu.12003. Epub
2013 Jan 7. Review. PubMed PMID: 23294802.

200: Radford C, Prince A, Lewis K, Pal T. Factors which impact the delivery of
genetic risk assessment services focused on inherited cancer genomics: expanding
the role and reach of certified genetics professionals. J Genet Couns. 2014
Aug;23(4):522-30. doi: 10.1007/s10897-013-9668-1. Epub 2013 Dec 4. PubMed PMID:
24306140.

201: Ramos EM, Din-Lovinescu C, Berg JS, Brooks LD, Duncanson A, Dunn M, Good P,
Hubbard TJ, Jarvik GP, O’Donnell C, Sherry ST, Aronson N, Biesecker LG, Blumberg
B, Calonge N, Colhoun HM, Epstein RS, Flicek P, Gordon ES, Green ED, Green RC,
Hurles M, Kawamoto K, Knaus W, Ledbetter DH, Levy HP, Lyon E, Maglott D, McLeod
HL, Rahman N, Randhawa G, Wicklund C, Manolio TA, Chisholm RL, Williams MS.
Characterizing genetic variants for clinical action. Am J Med Genet C Semin Med
Genet. 2014 Mar;166C(1):93-104. doi: 10.1002/ajmg.c.31386. Epub 2014 Mar 13.
PubMed PMID: 24634402; PubMed Central PMCID: PMC4158437.

202: Raspberry K, Skinner D. Enacting genetic responsibility: experiences of
mothers who carry the fragile X gene. Sociol Health Illn. 2011 Mar;33(3):420-33.
doi: 10.1111/j.1467-9566.2010.01289.x. Epub 2010 Nov 5. PubMed PMID: 21054442;
PubMed Central PMCID: PMC3057279.

203: Raspberry K, Skinner D. Experiencing the genetic body: parents’ encounters
with pediatric clinical genetics. Med Anthropol. 2007 Oct-Dec;26(4):355-91.
PubMed PMID: 17943604.

204: Raspberry KA, Skinner D. Negotiating desires and options: how mothers who
carry the fragile X gene experience reproductive decisions. Soc Sci Med. 2011
Mar;72(6):992-8. doi: 10.1016/j.socscimed.2011.01.010. Epub 2011 Feb 3. PubMed
PMID: 21333433; PubMed Central PMCID: PMC3070848.

205: Rehm HL, Berg JS, Brooks LD, Bustamante CD, Evans JP, Landrum MJ, Ledbetter
DH, Maglott DR, Martin CL, Nussbaum RL, Plon SE, Ramos EM, Sherry ST, Watson MS;
ClinGen. ClinGen–the Clinical Genome Resource. N Engl J Med. 2015 Jun
4;372(23):2235-42. doi: 10.1056/NEJMsr1406261. Epub 2015 May 27. PubMed PMID:
26014595; PubMed Central PMCID: PMC4474187.

206: Rini C, Khan CM, Moore E, Roche MI, Evans JP, Berg JS, Powell BC,
Corbie-Smith G, Foreman AKM, Griesemer I, Lee K, O’Daniel JM, Henderson GE. The
who, what, and why of research participants’ intentions to request a broad range
of secondary findings in a diagnostic genomic sequencing study. Genet Med. 2018
Jul;20(7):760-769. doi: 10.1038/gim.2017.176. Epub 2017 Oct 26. PubMed PMID:
29261173; PubMed Central PMCID: PMC5920790.

207: Rivera SM, Brothers KB, Cadigan RJ, Harrell HL, Rothstein MA, Sharp RR,
Goldenberg AJ. Modernizing Research Regulations Is Not Enough: It’s Time to Think
Outside the Regulatory Box. Am J Bioeth. 2017 Jul;17(7):1-3. doi:
10.1080/15265161.2017.1328899. PubMed PMID: 28661748; PubMed Central PMCID:
PMC6089353.

208: Rivera-Muñoz EA, Milko LV, Harrison SM, Azzariti DR, Kurtz CL, Lee K, Mester
JL, Weaver MA, Currey E, Craigen W, Eng C, Funke B, Hegde M, Hershberger RE, Mao
R, Steiner RD, Vincent LM, Martin CL, Plon SE, Ramos E, Rehm HL, Watson M, Berg
JS. ClinGen Variant Curation Expert Panel experiences and standardized processes
for disease and gene-level specification of the ACMG/AMP guidelines for sequence
variant interpretation. Hum Mutat. 2018 Nov;39(11):1614-1622. doi:
10.1002/humu.23645. PubMed PMID: 30311389.

209: Robin NH, Evans JP. Why physicians must understand evolution. Curr Opin
Pediatr. 2009 Dec;21(6):699-702. doi: 10.1097/MOP.0b013e3283323aa8. Review.
PubMed PMID: 19770767.

210: Roche MI, Griesemer I, Khan CM, Moore E, Lin FC, O’Daniel JM, Foreman AKM,
Lee K, Powell BC, Berg JS, Evans JP, Henderson GE, Rini C. Factors influencing
NCGENES research participants’ 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.

211: Roche MI, Berg JS. Incidental Findings with Genomic Testing: Implications
for Genetic Counseling Practice. Curr Genet Med Rep. 2015;3(4):166-176. Epub 2015
Aug 25. Review. PubMed PMID: 26566463; PubMed Central PMCID: PMC4633435.

212: Roche MI, Palmer CG. Next generation genetic counseling: introduction to the
special issue. J Genet Couns. 2014 Aug;23(4):439-44. doi:
10.1007/s10897-014-9729-0. Epub 2014 May 18. PubMed PMID: 24838698; PubMed
Central PMCID: PMC4096054.

213: Roche MI. Moving toward NextGenetic counseling. Genet Med. 2012
Sep;14(9):777-8. doi: 10.1038/gim.2012.84. Epub 2012 Jul 12. PubMed PMID:
22791211.

214: Roche MI, Skinner D. How parents search, interpret, and evaluate genetic
information obtained from the internet. J Genet Couns. 2009 Apr;18(2):119-29.
doi: 10.1007/s10897-008-9198-4. Epub 2008 Oct 21. PubMed PMID: 18937062; PubMed
Central PMCID: PMC3114943.

215: Roederer MW, Van Riper M, Valgus J, Knafl G, McLeod H. Knowledge, attitudes
and education of pharmacists regarding pharmacogenetic testing. Per Med. 2012
Jan;9(1):19-27. doi: 10.2217/pme.11.87. PubMed PMID: 29783293.

216: Schaffer R, Kuczynski K, Skinner D. Producing genetic knowledge and
citizenship through the Internet: mothers, pediatric genetics, and cybermedicine.
Sociol Health Illn. 2008 Jan;30(1):145-59. doi: 10.1111/j.1467-9566.2007.01042.x.
PubMed PMID: 18254838.

217: Schmidlen T, Sturm AC, Hovick S, Scheinfeldt L, Scott Roberts J, Morr L,
McElroy J, Toland AE, Christman M, O’Daniel JM, Gordon ES, Bernhardt BA, Ormond
KE, Sweet K. Operationalizing the Reciprocal Engagement Model of Genetic
Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling
and Testing. J Genet Couns. 2018 Sep;27(5):1111-1129. doi:
10.1007/s10897-018-0230-z. Epub 2018 Feb 19. PubMed PMID: 29460110; PubMed
Central PMCID: PMC6098987.

218: Skinner D, Roche MI, Weck KE, Raspberry KA, Foreman AKM, Strande NT, Berg
JS, Evans JP, Henderson GE. “Possibly positive or certainly uncertain?”:
participants’ responses to uncertain diagnostic results from exome sequencing.
Genet Med. 2018 Mar;20(3):313-319. doi: 10.1038/gim.2017.135. Epub 2017 Oct 2.
PubMed PMID: 29593351; PubMed Central PMCID: PMC5880300.

219: Skinner D, Raspberry KA, King M. The nuanced negative: Meanings of a
negative diagnostic result in clinical exome sequencing. Sociol Health Illn. 2016
Nov;38(8):1303-1317. doi: 10.1111/1467-9566.12460. Epub 2016 Aug 19. PubMed PMID:
27538589; PubMed Central PMCID: PMC5089912.

220: Skinner D, Choudhury S, Sideris J, Guarda S, Buansi A, Roche M, Powell C,
Bailey DB Jr. Parents’ decisions to screen newborns for FMR1 gene expansions in a
pilot research project. Pediatrics. 2011 Jun;127(6):e1455-63. doi:
10.1542/peds.2010-3078. Epub 2011 May 29. PubMed PMID: 21624881; PubMed Central
PMCID: PMC3103273.

221: Spencer DH, Lockwood C, Topol E, Evans JP, Green RC, Mansfield E, Tezak Z.
Direct-to-consumer genetic testing: reliable or risky? Clin Chem. 2011
Dec;57(12):1641-4. doi: 10.1373/clinchem.2011.167197. Epub 2011 Sep 1. PubMed
PMID: 21885623.

222: Sterling R, Henderson GE, Corbie-Smith G. Public willingness to participate
in and public opinions about genetic variation research: a review of the
literature. Am J Public Health. 2006 Nov;96(11):1971-8. Epub 2006 Oct 3. Review.
PubMed PMID: 17018829; PubMed Central PMCID: PMC1751820.

223: Strande NT, Brnich SE, Roman TS, Berg JS. Navigating the nuances of clinical
sequence variant interpretation in Mendelian disease. Genet Med. 2018
Sep;20(9):918-926. doi: 10.1038/s41436-018-0100-y. Epub 2018 Jul 10. Review.
PubMed PMID: 29988079.

224: Strande NT, Riggs ER, Buchanan AH, Ceyhan-Birsoy O, DiStefano M, Dwight SS,
Goldstein J, Ghosh R, Seifert BA, Sneddon TP, Wright MW, Milko LV, Cherry JM,
Giovanni MA, Murray MF, O’Daniel JM, Ramos EM, Santani AB, Scott AF, Plon SE,
Rehm HL, Martin CL, Berg JS. Evaluating the Clinical Validity of Gene-Disease
Associations: An Evidence-Based Framework Developed by the Clinical Genome
Resource. Am J Hum Genet. 2017 Jun 1;100(6):895-906. doi:
10.1016/j.ajhg.2017.04.015. Epub 2017 May 25. PubMed PMID: 28552198; PubMed
Central PMCID: PMC5473734.

225: Strande NT, Berg JS. Defining the Clinical Value of a Genomic Diagnosis in
the Era of Next-Generation Sequencing. Annu Rev Genomics Hum Genet. 2016 Aug
31;17:303-32. doi: 10.1146/annurev-genom-083115-022348. Epub 2016 May 26. Review.
PubMed PMID: 27362341.

226: Susswein LR, Skrzynia C, Lange LA, Booker JK, Graham ML 3rd, Evans JP.
Increased uptake of BRCA1/2 genetic testing among African American women with a
recent diagnosis of breast cancer. J Clin Oncol. 2008 Jan 1;26(1):32-6. doi:
10.1200/JCO.2007.10.6377. PubMed PMID: 18165638.

227: Tan N, Amendola LM, O’Daniel JM, Burt A, Horike-Pyne MJ, Boshe L, Henderson
GE, Rini C, Roche MI, Hisama FM, Burke W, Wilfond B, Jarvik GP. Is “incidental
finding” the best term?: a study of patients’ preferences. Genet Med. 2017
Feb;19(2):176-181. doi: 10.1038/gim.2016.96. Epub 2016 Aug 4. PubMed PMID:
27490114; PubMed Central PMCID: PMC5291803.

228: Timmermans S, Buchbinder M. Expanded newborn screening: articulating the
ontology of diseases with bridging work in the clinic. Sociol Health Illn. 2012
Feb;34(2):208-20. doi: 10.1111/j.1467-9566.2011.01398.x. Epub 2011 Sep 19. PubMed
PMID: 21929648.

229: Timmermans S, Buchbinder M. Patients-in-waiting: Living between sickness and
health in the genomics era. J Health Soc Behav. 2010 Dec;51(4):408-23. doi:
10.1177/0022146510386794. PubMed PMID: 21131618.

230: Tomlinson AN, Skinner D, Perry DL, Scollon SR, Roche MI, Bernhardt BA. “Not
Tied Up Neatly with a Bow”: Professionals’ Challenging Cases in Informed Consent
for Genomic Sequencing. J Genet Couns. 2016 Feb;25(1):62-72. doi:
10.1007/s10897-015-9842-8. Epub 2015 Apr 26. PubMed PMID: 25911622; PubMed
Central PMCID: PMC4621265.

231: Vora NL, Powell B, Brandt A, Strande N, Hardisty E, Gilmore K, Foreman AKM,
Wilhelmsen K, Bizon C, Reilly J, Owen P, Powell CM, Skinner D, Rini C, Lyerly AD,
Boggess KA, Weck K, Berg JS, Evans JP. Prenatal exome sequencing in anomalous
fetuses: new opportunities and challenges. Genet Med. 2017 Nov;19(11):1207-1216.
doi: 10.1038/gim.2017.33. Epub 2017 May 18. PubMed PMID: 28518170; PubMed Central
PMCID: PMC5675748.

232: Walker RL, Juengst ET, Whipple W, Davis AM. Genomic research with the newly
dead: a crossroads for ethics and policy. J Law Med Ethics. 2014
Summer;42(2):220-31. doi: 10.1111/jlme.12137. PubMed PMID: 25040385; PubMed
Central PMCID: PMC4378691.

233: Walker RL, Morrissey C. Bioethics methods in the ethical, legal, and social
implications of the human genome project literature. Bioethics. 2014
Nov;28(9):481-90. doi: 10.1111/bioe.12023. Epub 2013 Jun 24. Review. PubMed PMID:
23796275; PubMed Central PMCID: PMC3785570.

234: Walker RL, Morrissey C. Charting ELSI’s future course: lessons from the
recent past. Genet Med. 2012 Feb;14(2):259-67. doi: 10.1038/gim.2011.60. Epub
2012 Jan 19. PubMed PMID: 22261758; PubMed Central PMCID: PMC5901958.

235: Waltz M, Cadigan RJ, Prince AER, Skinner D, Henderson GE. Age and perceived
risks and benefits of preventive genomic screening. Genet Med. 2018
Sep;20(9):1038-1044. doi: 10.1038/gim.2017.206. Epub 2017 Dec 7. PubMed PMID:
29215654; PubMed Central PMCID: PMC5991986.

236: Webber EM, Hunter JE, Biesecker LG, Buchanan AH, Clarke EV, Currey E,
Dagan-Rosenfeld O, Lee K, Lindor NM, Martin CL, Milosavljevic A, Mittendorf KF,
Muessig KR, O’Daniel JM, Patel RY, Ramos EM, Rego S, Slavotinek AM, Sobriera NLM,
Weaver MA, Williams MS, Evans JP, Goddard KAB; ClinGen Resource. Evidence-based
assessments of clinical actionability in the context of secondary findings:
Updates from ClinGen’s Actionability Working Group. Hum Mutat. 2018
Nov;39(11):1677-1685. doi: 10.1002/humu.23631. PubMed PMID: 30311382.

237: Whitmarsh I, Davis AM, Skinner D, Bailey DB Jr. A place for genetic
uncertainty: parents valuing an unknown in the meaning of disease. Soc Sci Med.
2007 Sep;65(6):1082-93. Epub 2007 Jun 11. PubMed PMID: 17561324; PubMed Central
PMCID: PMC2267724.

238: Wolf SM, Amendola LM, Berg JS, Chung WK, Clayton EW, Green RC, Harris-Wai J,
Henderson GE, Jarvik GP, Koenig BA, Lehmann LS, McGuire AL, O’Rourke P, Somkin C,
Wilfond BS, Burke W. Navigating the research-clinical interface in genomic
medicine: analysis from the CSER Consortium. Genet Med. 2018 Apr;20(5):545-553.
doi: 10.1038/gim.2017.137. Epub 2017 Aug 31. PubMed PMID: 28858330; PubMed
Central PMCID: PMC5832495.

239: Woolley JP, McGowan ML, Teare HJ, Coathup V, Fishman JR, Settersten RA Jr,
Sterckx S, Kaye J, Juengst ET. Citizen science or scientific citizenship?
Disentangling the uses of public engagement rhetoric in national research
initiatives. BMC Med Ethics. 2016 Jun 4;17(1):33. doi: 10.1186/s12910-016-0117-1.
PubMed PMID: 27260081; PubMed Central PMCID: PMC4893207.