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Items: 1 to 50 of 61

1.

Pediatric Drug Labeling and Imperfect Information.

Wilfond BS.

Hastings Cent Rep. 2020 Jan;50(1):3. doi: 10.1002/hast.1074.

PMID:
32068277
2.

A Pragmatic Trial of Suicide Risk Assessment and Ambulance Transport Decision Making Among Emergency Medical Services Providers: Implications for Patient Consent.

Wilfond BS, Zabrowski J, Johnson LM.

Am J Bioeth. 2019 Oct;19(10):97-98. doi: 10.1080/15265161.2019.1654024. No abstract available.

PMID:
31557089
3.

Secondary findings from clinical genomic sequencing: prevalence, patient perspectives, family history assessment, and health-care costs from a multisite study.

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.

Genet Med. 2019 May;21(5):1100-1110. doi: 10.1038/s41436-018-0308-x. Epub 2018 Oct 5. Erratum in: Genet Med. 2019 Jan 22;:.

4.

The Clinical Sequencing Evidence-Generating Research Consortium: Integrating Genomic Sequencing in Diverse and Medically Underserved Populations.

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.

Am J Hum Genet. 2018 Sep 6;103(3):319-327. doi: 10.1016/j.ajhg.2018.08.007.

5.

Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.

Wolf SM, Scholtes E, Koenig BA, Petersen GM, Berry SA, Beskow LM, Daly MB, Fernandez CV, Green RC, LeRoy BS, Lindor NM, O'Rourke PP, Breitkopf CR, Rothstein MA, Van Ness B, Wilfond BS.

J Law Med Ethics. 2018 Mar;46(1):87-109. doi: 10.1177/1073110518766024. Epub 2018 Mar 27. No abstract available.

6.

Lessons Learned From A Study Of Genomics-Based Carrier Screening For Reproductive Decision Making.

Wilfond BS, Kauffman TL, Jarvik GP, Reiss JA, Richards CS, McMullen C, Gilmore M, Himes P, Kraft SA, Porter KM, Schneider JL, Punj S, Leo MC, Dickerson JF, Lynch FL, Clarke E, Rope AF, Lutz K, Goddard KAB.

Health Aff (Millwood). 2018 May;37(5):809-816. doi: 10.1377/hlthaff.2017.1578.

PMID:
29733724
7.

Navigating the research-clinical interface in genomic medicine: analysis from the CSER Consortium.

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.

Genet Med. 2018 Apr;20(5):545-553. doi: 10.1038/gim.2017.137. Epub 2017 Aug 31.

8.

Genome sequencing and carrier testing: decisions on categorization and whether to disclose results of carrier testing.

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.

Genet Med. 2017 Jul;19(7):803-808. doi: 10.1038/gim.2016.198. Epub 2017 Jan 12.

9.

A randomized study of multimedia informational aids for research on medical practices: Implications for informed consent.

Kraft SA, Constantine M, Magnus D, Porter KM, Lee SS, Green M, Kass NE, Wilfond BS, Cho MK.

Clin Trials. 2017 Feb;14(1):94-102. doi: 10.1177/1740774516669352. Epub 2016 Sep 23.

10.

Is "incidental finding" the best term?: a study of patients' preferences.

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.

Genet Med. 2017 Feb;19(2):176-181. doi: 10.1038/gim.2016.96. Epub 2016 Aug 4.

11.

Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.

Green RC, Goddard KAB, 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.

Am J Hum Genet. 2016 Jun 2;98(6):1051-1066. doi: 10.1016/j.ajhg.2016.04.011. Epub 2016 May 12. Erratum in: Am J Hum Genet. 2016 Jul 7;99(1):246.

12.

"Watching time tick by…": Decision making for Duchenne muscular dystrophy trials.

Peay HL, Scharff H, Tibben A, Wilfond B, Bowie J, Johnson J, Nagaraju K, Escolar D, Piacentino J, Biesecker BB.

Contemp Clin Trials. 2016 Jan;46:1-6. doi: 10.1016/j.cct.2015.11.006. Epub 2015 Nov 9.

13.

Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.

Wolf SM, Branum R, Koenig BA, Petersen GM, Berry SA, Beskow LM, Daly MB, Fernandez CV, Green RC, LeRoy BS, Lindor NM, O'Rourke PP, Breitkopf CR, Rothstein MA, Van Ness B, Wilfond BS.

J Law Med Ethics. 2015 Fall;43(3):440-63. doi: 10.1111/jlme.12288.

14.

The ethics and regulatory landscape of including vulnerable populations in pragmatic clinical trials.

Welch MJ, Lally R, Miller JE, Pittman S, Brodsky L, Caplan AL, Uhlenbrauck G, Louzao DM, Fischer JH, Wilfond B.

Clin Trials. 2015 Oct;12(5):503-10. doi: 10.1177/1740774515597701. Epub 2015 Sep 15.

15.

Broad Consent for Research With Biological Samples: Workshop Conclusions.

Grady C, Eckstein L, Berkman B, Brock D, Cook-Deegan R, Fullerton SM, Greely H, Hansson MG, Hull S, Kim S, Lo B, Pentz R, Rodriguez L, Weil C, Wilfond BS, Wendler D.

Am J Bioeth. 2015;15(9):34-42. doi: 10.1080/15265161.2015.1062162.

16.

Patient Perspectives on the Learning Health System: The Importance of Trust and Shared Decision Making.

Kelley M, James C, Alessi Kraft S, Korngiebel D, Wijangco I, Rosenthal E, Joffe S, Cho MK, Wilfond B, Lee SS.

Am J Bioeth. 2015;15(9):4-17. doi: 10.1080/15265161.2015.1062163.

17.

Attitudes Toward Risk and Informed Consent for Research on Medical Practices: A Cross-sectional Survey.

Cho MK, Magnus D, Constantine M, Lee SS, Kelley M, Alessi S, Korngiebel D, James C, Kuwana E, Gallagher TH, Diekema D, Capron AM, Joffe S, Wilfond BS.

Ann Intern Med. 2015 May 19;162(10):690-6. doi: 10.7326/M15-0166.

18.

Contrasting views of risk perception and influence of financial compensation between adolescent research participants and their parents.

Wiener L, Viola A, Wilfond BS, Wendler D, Grady C.

J Empir Res Hum Res Ethics. 2015 Feb;10(1):49-58. doi: 10.1177/1556264614563249. Epub 2014 Dec 17.

19.

Actionable exomic incidental findings in 6503 participants: challenges of variant classification.

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.

Genome Res. 2015 Mar;25(3):305-15. doi: 10.1101/gr.183483.114. Epub 2015 Jan 30.

20.

Phenylketonuria Scientific Review Conference: state of the science and future research needs.

Camp KM, Parisi MA, Acosta PB, Berry GT, Bilder DA, Blau N, Bodamer OA, Brosco JP, Brown CS, Burlina AB, Burton BK, Chang CS, Coates PM, Cunningham AC, Dobrowolski SF, Ferguson JH, Franklin TD, Frazier DM, Grange DK, Greene CL, Groft SC, Harding CO, Howell RR, Huntington KL, Hyatt-Knorr HD, Jevaji IP, Levy HL, Lichter-Konecki U, Lindegren ML, Lloyd-Puryear MA, Matalon K, MacDonald A, McPheeters ML, Mitchell JJ, Mofidi S, Moseley KD, Mueller CM, Mulberg AE, Nerurkar LS, Ogata BN, Pariser AR, Prasad S, Pridjian G, Rasmussen SA, Reddy UM, Rohr FJ, Singh RH, Sirrs SM, Stremer SE, Tagle DA, Thompson SM, Urv TK, Utz JR, van Spronsen F, Vockley J, Waisbren SE, Weglicki LS, White DA, Whitley CB, Wilfond BS, Yannicelli S, Young JM.

Mol Genet Metab. 2014 Jun;112(2):87-122. doi: 10.1016/j.ymgme.2014.02.013. Epub 2014 Mar 6.

PMID:
24667081
21.

Accepting brain death.

Magnus DC, Wilfond BS, Caplan AL.

N Engl J Med. 2014 Mar 6;370(10):891-4. doi: 10.1056/NEJMp1400930. Epub 2014 Feb 5. No abstract available.

PMID:
24499177
22.

Our children are not a diagnosis: the experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18.

Guon J, Wilfond BS, Farlow B, Brazg T, Janvier A.

Am J Med Genet A. 2014 Feb;164A(2):308-18. doi: 10.1002/ajmg.a.36298. Epub 2013 Dec 5.

PMID:
24311520
23.

Recommendations for returning genomic incidental findings? We need to talk!

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.

Genet Med. 2013 Nov;15(11):854-9. doi: 10.1038/gim.2013.113. Epub 2013 Aug 1. Review.

24.

Growing up in the genomic era: implications of whole-genome sequencing for children, families, and pediatric practice.

Wade CH, Tarini BA, Wilfond BS.

Annu Rev Genomics Hum Genet. 2013;14:535-55. doi: 10.1146/annurev-genom-091212-153425. Epub 2013 Jul 15. Review.

25.

Fuzzy images: Ethical implications of using routine neuroimaging in premature neonates to predict neurologic outcomes.

Mann PC, Woodrum DE, Wilfond BS.

J Pediatr. 2013 Aug;163(2):587-92. doi: 10.1016/j.jpeds.2013.03.055. Epub 2013 Apr 24. No abstract available.

PMID:
23623529
26.

Examining palliative care team involvement in automatic consultations for children on extracorporeal life support in the pediatric intensive care unit.

Doorenbos AZ, Starks H, Bourget E, McMullan DM, Lewis-Newby M, Rue TC, Lindhorst T, Aisenberg E, Oman N, Curtis JR, Hays R; Seattle Ethics in ECLS (SEE) Consortium, Clark JD, Baden HP, Brogan TV, Di Gennaro JL, Mazor R, Roberts JS, Turnbull J, Wilfond BS.

J Palliat Med. 2013 May;16(5):492-5. doi: 10.1089/jpm.2012.0536. Epub 2013 Mar 29.

27.

Li-Fraumeni syndrome: report of a clinical research workshop and creation of a research consortium.

Mai PL, Malkin D, Garber JE, Schiffman JD, Weitzel JN, Strong LC, Wyss O, Locke L, Means V, Achatz MI, Hainaut P, Frebourg T, Evans DG, Bleiker E, Patenaude A, Schneider K, Wilfond B, Peters JA, Hwang PM, Ford J, Tabori U, Ognjanovic S, Dennis PA, Wentzensen IM, Greene MH, Fraumeni JF Jr, Savage SA.

Cancer Genet. 2012 Oct;205(10):479-87. doi: 10.1016/j.cancergen.2012.06.008. Epub 2012 Aug 29.

28.

The experience of families with children with trisomy 13 and 18 in social networks.

Janvier A, Farlow B, Wilfond BS.

Pediatrics. 2012 Aug;130(2):293-8. doi: 10.1542/peds.2012-0151. Epub 2012 Jul 23.

PMID:
22826570
29.

Navigating growth attenuation in children with profound disabilities. Children's interests, family decision-making, and community concerns.

Wilfond BS, Miller PS, Korfiatis C, Diekema DS, Dudzinski DM, Goering S; Seattle Growth Attenuation and Ethics Working Group.

Hastings Cent Rep. 2010 Nov-Dec;40(6):27-40. No abstract available.

PMID:
21155109
30.

Patient perspectives on group benefits and harms in genetic research.

Goldenberg AJ, Hull SC, Wilfond BS, Sharp RR.

Public Health Genomics. 2011;14(3):135-42. doi: 10.1159/000317497. Epub 2010 Oct 8.

31.

All in the family: disclosure of "unwanted" information to an adolescent to benefit a relative.

Denny CC, Wilfond BS, Peters JA, Giri N, Alter BP.

Am J Med Genet A. 2008 Nov 1;146A(21):2719-24. doi: 10.1002/ajmg.a.32362.

32.

Genetic and environmental risk assessment for colorectal cancer risk in primary care practice settings: a pilot study.

Myers RE, Weinberg DS, Manne SL, Sifri R, Cocroft J, Kash K, Wilfond B.

Genet Med. 2007 Jun;9(6):378-84.

PMID:
17575504
33.

Guidelines for implementation of cystic fibrosis newborn screening programs: Cystic Fibrosis Foundation workshop report.

Comeau AM, Accurso FJ, White TB, Campbell PW 3rd, Hoffman G, Parad RB, Wilfond BS, Rosenfeld M, Sontag MK, Massie J, Farrell PM, O'Sullivan BP; Cystic Fibrosis Foundation.

Pediatrics. 2007 Feb;119(2):e495-518.

PMID:
17272609
34.

ATS Consensus Statement: Research opportunities and challenges in pediatric pulmonology.

Lands LC, Allen J, Cloutier M, Leigh M, McColley S, Murphy T, Wilfond B; Pediatric Assembly of American Thoracic Society Subcommittee.

Am J Respir Crit Care Med. 2005 Sep 15;172(6):776-80. Review. No abstract available.

PMID:
16148195
35.

Therapeutic misconception in early phase gene transfer trials.

Henderson GE, Easter MM, Zimmer C, King NM, Davis AM, Rothschild BB, Churchill LR, Wilfond BS, Nelson DK.

Soc Sci Med. 2006 Jan;62(1):239-53. Epub 2005 Jul 5.

PMID:
16000230
36.
37.

Consent forms and the therapeutic misconception: the example of gene transfer research.

King NM, Henderson GE, Churchill LR, Davis AM, Hull SC, Nelson DK, Parham-Vetter PC, Rothschild BB, Easter MM, Wilfond BS.

IRB. 2005 Jan-Feb;27(1):1-8. No abstract available.

PMID:
15835063
38.

Recruitment approaches for family studies: attitudes of index patients and their relatives.

Hull SC, Glanz K, Steffen A, Wilfond BS.

IRB. 2004 Jul-Aug;26(4):12-7. No abstract available.

39.

Uncertain benefit: investigators' views and communications in early phase gene transfer trials.

Henderson GE, Davis AM, King NM, Easter MM, Zimmer CR, Rothschild BB, Wilfond BS, Nelson DK, Churchill LR.

Mol Ther. 2004 Aug;10(2):225-31.

40.

Ethical assessment of clinical asthma trials including children subjects.

Coffey MJ, Wilfond B, Ross LF.

Pediatrics. 2004 Jan;113(1 Pt 1):87-94. Review.

PMID:
14702454
41.

Assessing benefits in clinical research: why diversity in benefit assessment can be risky.

Churchill LR, Nelson DK, Henderson GE, King NM, Davis AM, Leahey E, Wilfond BS.

IRB. 2003 May-Jun;25(3):1-8. No abstract available.

PMID:
14569987
42.

When do the federal regulations allow placebo-controlled trials in children?

Miller FG, Wendler D, Wilfond B.

J Pediatr. 2003 Feb;142(2):102-7. Review. No abstract available.

PMID:
12584527
43.

Descriptions of benefits and risks in consent forms for phase 1 oncology trials.

Horng S, Emanuel EJ, Wilfond B, Rackoff J, Martz K, Grady C.

N Engl J Med. 2002 Dec 26;347(26):2134-40.

44.

The invisible hand in clinical research: the study coordinator's critical role in human subjects protection.

Davis AM, Hull SC, Grady C, Wilfond BS, Henderson GE.

J Law Med Ethics. 2002 Fall;30(3):411-9. No abstract available.

45.

Does the current consent process minimize the risks of genetics research?

Wendler D, Prasad K, Wilfond B.

Am J Med Genet. 2002 Dec 1;113(3):258-62.

PMID:
12439893
46.

Emerging ethical issues in pharmacogenomics: from research to clinical practice.

Freund CL, Wilfond BS.

Am J Pharmacogenomics. 2002;2(4):273-81. Review.

PMID:
12421098
47.

Gene-expression profiles in hereditary breast cancer.

Hedenfalk I, Duggan D, Chen Y, Radmacher M, Bittner M, Simon R, Meltzer P, Gusterson B, Esteller M, Kallioniemi OP, Wilfond B, Borg A, Trent J, Raffeld M, Yakhini Z, Ben-Dor A, Dougherty E, Kononen J, Bubendorf L, Fehrle W, Pittaluga S, Gruvberger S, Loman N, Johannsson O, Olsson H, Sauter G.

N Engl J Med. 2001 Feb 22;344(8):539-48.

48.

Mixed messages: presentation of information in cystic fibrosis-screening pamphlets.

Loeben GL, Marteau TM, Wilfond BS.

Am J Hum Genet. 1998 Oct;63(4):1181-9.

49.

Cystic fibrosis newborn screening: impact on reproductive behavior and implications for genetic counseling.

Mischler EH, Wilfond BS, Fost N, Laxova A, Reiser C, Sauer CM, Makholm LM, Shen G, Feenan L, McCarthy C, Farrell PM.

Pediatrics. 1998 Jul;102(1 Pt 1):44-52.

PMID:
9651412
50.

Ethical issues in umbilical cord blood banking. Working Group on Ethical Issues in Umbilical Cord Blood Banking.

Sugarman J, Kaalund V, Kodish E, Marshall MF, Reisner EG, Wilfond BS, Wolpe PR.

JAMA. 1997 Sep 17;278(11):938-43. Review.

PMID:
9302248

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