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Items: 1 to 50 of 228

1.

Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some.

Childerhose JE, Finnila CR, Yu JH, Koenig BA, McEwen J, Berg SL, Wilfond BS, Appelbaum PS, Brothers KB.

Ethics Hum Res. 2019 Sep;41(5):2-15. doi: 10.1002/eahr.500029.

PMID:
31541538
2.

Consent for clinical genome sequencing: considerations from the Clinical Sequencing Exploratory Research Consortium.

Yu JH, Appelbaum PS, Brothers KB, Joffe S, Kauffman TL, Koenig BA, Prince AE, Scollon S, Wolf SM, Bernhardt BA, Wilfond BS; Clinical Sequencing Exploratory Research (CSER) Consortium Informed Consent and Governance Working Group.

Per Med. 2019 Jul;16(4):325-333. doi: 10.2217/pme-2018-0076. Epub 2019 Jul 17.

PMID:
31313633
3.

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study.

Janvier A, Farlow B, Barrington KJ, Bourque CJ, Brazg T, Wilfond B.

Palliat Med. 2019 Jul 8:269216319860662. doi: 10.1177/0269216319860662. [Epub ahead of print]

PMID:
31280664
4.

The Relational Potential Standard: Rethinking the Ethical Justification for Life-Sustaining Treatment for Children with Profound Cognitive Disabilities.

Wightman A, Kett J, Campelia G, Wilfond BS.

Hastings Cent Rep. 2019 May;49(3):18-25. doi: 10.1002/hast.1003.

PMID:
31269258
5.

Understanding as an Ethical Aspiration in an Era of Digital Technology-Based Communication: An Analysis of Informed Consent Functions.

Kraft SA, Garrison NA, Wilfond BS.

Am J Bioeth. 2019 May;19(5):34-36. doi: 10.1080/15265161.2019.1587035. No abstract available.

PMID:
31090520
6.

Should Research Participants Be Notified About Results of Currently Unknown but Potential Significance?

Johnson LM, Zabrowski J, Wilfond BS.

Am J Bioeth. 2019 Apr;19(4):73-74. doi: 10.1080/15265161.2019.1572831. No abstract available.

PMID:
30994427
7.

The Limitations of "Boilerplate" Language in Informed Consent: Single IRB Review of Multisite Genetic Research in Military Personnel.

Wilfond BS, Zabrowski J, Johnson LM.

Am J Bioeth. 2019 Apr;19(4):81-82. doi: 10.1080/15265161.2019.1572832. No abstract available.

PMID:
30994423
8.

Rethinking the "open future" argument against predictive genetic testing of children.

Garrett JR, Lantos JD, Biesecker LG, Childerhose JE, Chung WK, Holm IA, Koenig BA, McEwen JE, Wilfond BS, Brothers K; Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group.

Genet Med. 2019 Mar 21. doi: 10.1038/s41436-019-0483-4. [Epub ahead of print]

9.

Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.

Wong CS, Kogon AJ, Warady BA, Furth SL, Lantos JD, Wilfond BS.

Am J Kidney Dis. 2019 Jun;73(6):837-845. doi: 10.1053/j.ajkd.2019.01.020. Epub 2019 Mar 14.

PMID:
30879919
10.

Gaps in the Implementation of Shared Decision-making: Illustrative Cases.

Weiss EM, Clark JD, Heike CL, Rosenberg AR, Shah SK, Wilfond BS, Opel DJ.

Pediatrics. 2019 Mar;143(3). pii: e20183055. doi: 10.1542/peds.2018-3055. Epub 2019 Feb 5.

PMID:
30824603
11.

Correction: 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, Sagardia AM, 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):1261-1262. doi: 10.1038/s41436-019-0440-2.

PMID:
30670880
12.

A case for expanding carrier testing to include actionable X-linked disorders.

Rope AF, Kauffman TL, Himes P, Amendola LM, Punj S, Akkari Y, Potter A, Davis JV, Schneider JL, Reiss JA, Gilmore MJ, McMullen CK, Nickerson DA, Richards CS, Jarvik GP, Wilfond BS, Goddard KAB.

Clin Case Rep. 2018 Sep 19;6(11):2092-2095. doi: 10.1002/ccr3.1806. eCollection 2018 Nov.

13.

Research to Promote Longevity and Health Span in Companion Dogs: A Pediatric Perspective.

Wilfond BS, Porter KM, Creevy KE, Kaeberlein M, Promislow D.

Am J Bioeth. 2018 Oct;18(10):64-65. doi: 10.1080/15265161.2018.1513591. No abstract available.

PMID:
30339074
14.

A Randomized Trial of Rapamycin to Increase Longevity and Healthspan in Companion Animals: Navigating the Boundary Between Protections for Animal Research and Human Subjects Research.

Taylor HA, Morales C, Johnson LM, Wilfond BS.

Am J Bioeth. 2018 Oct;18(10):58-59. doi: 10.1080/15265161.2018.1522166. No abstract available.

PMID:
30339066
15.

Ethical Considerations for Unblinding a Participant's Assignment to Interpret a Resolved Adverse Event.

Wilfond BS, Morales C, Johnson LM, Taylor HA.

Am J Bioeth. 2018 Oct;18(10):66-67. doi: 10.1080/15265161.2018.1522167. No abstract available.

PMID:
30339065
16.

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;:.

PMID:
30287922
17.

The evolving landscape of expanded carrier screening: challenges and opportunities.

Kraft SA, Duenas D, Wilfond BS, Goddard KAB.

Genet Med. 2019 Apr;21(4):790-797. doi: 10.1038/s41436-018-0273-4. Epub 2018 Sep 24. Review.

PMID:
30245516
18.

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.

19.

Approaches to carrier testing and results disclosure in translational genomics research: The clinical sequencing exploratory research consortium experience.

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.

Mol Genet Genomic Med. 2018 Nov;6(6):898-909. doi: 10.1002/mgg3.453. Epub 2018 Aug 21.

20.

Including ELSI research questions in newborn screening pilot studies.

Goldenberg AJ, Lloyd-Puryear M, Brosco JP, Therrell B, Bush L, Berry S, Brower A, Bonhomme N, Bowdish B, Chrysler D, Clarke A, Crawford T, Goldman E, Hiner S, Howell RR, Orren D, Wilfond BS, Watson M; Bioethics and Legal Workgroup of the Newborn Screening Translational Research Network.

Genet Med. 2019 Mar;21(3):525-533. doi: 10.1038/s41436-018-0101-x. Epub 2018 Aug 13.

PMID:
30100612
21.

Assessment of willingness to pay for expanded carrier screening among women and couples undergoing preconception carrier screening.

Clarke EV, Schneider JL, Lynch F, Kauffman TL, Leo MC, Rosales AG, Dickerson JF, Shuster E, Wilfond BS, Goddard KAB.

PLoS One. 2018 Jul 18;13(7):e0200139. doi: 10.1371/journal.pone.0200139. eCollection 2018.

22.

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.

23.

Research Consent at the Age of Majority: Preferable but not Obligatory.

Brothers KB, Wilfond BS.

Pediatrics. 2018 Aug;142(2). pii: e20173038. doi: 10.1542/peds.2017-3038. Epub 2018 Jul 6. Review.

24.

"I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research.

Lee SS, Cho MK, Kraft SA, Varsava N, Gillespie K, Ormond KE, Wilfond BS, Magnus D.

Genet Med. 2019 Jan;21(1):107-113. doi: 10.1038/s41436-018-0032-6. Epub 2018 Jun 11.

25.

Review of Current Care Models for Transgender Youth and Application to the Development of a Multidisciplinary Clinic - The Seattle Children's Hospital Experience.

Salehi P, Divall SA, Crouch JM, Hopkinson RA, Kroon L, Lawrence J, Wilfond BS, Inwards-Breland DJ.

Pediatr Endocrinol Rev. 2018 Apr;15(4):280-290. doi: 10.17458/per.vol15.2018.sdc.TransgenderYouth.

PMID:
29806748
26.

Informed consent for a neonatal clinical trial: parental experiences and perspectives.

Shah AR, Wilfond BS, Silvia A, Hancuch K, Woodrum D, Heagerty P, Ohls RK, Courtney SE, Frantz ID, Gogcu S, Bishop CE, Ahmad KA, Kathen C, Juul S; PENUT Neonatal Informed Consent Working Group.

J Perinatol. 2018 Jul;38(7):865-872. doi: 10.1038/s41372-018-0119-6. Epub 2018 May 25.

PMID:
29795451
27.

Preconception Carrier Screening by Genome Sequencing: Results from the Clinical Laboratory.

Punj S, Akkari Y, Huang J, Yang F, Creason A, Pak C, Potter A, Dorschner MO, Nickerson DA, Robertson PD, Jarvik GP, Amendola LM, Schleit J, Simpson DK, Rope AF, Reiss J, Kauffman T, Gilmore MJ, Himes P, Wilfond B, Goddard KAB, Richards CS.

Am J Hum Genet. 2018 Jun 7;102(6):1078-1089. doi: 10.1016/j.ajhg.2018.04.004. Epub 2018 May 10.

28.

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
29.

Trustworthiness in Untrustworthy Times: Response to Open Peer Commentaries on Beyond Consent.

Kraft SA, Cho MK, Gillespie K, Varsava N, Ormond KE, Wilfond BS, Lee SS.

Am J Bioeth. 2018 May;18(5):W6-W8. doi: 10.1080/15265161.2018.1461953. No abstract available.

PMID:
29697352
30.

Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.

Kraft SA, Cho MK, Gillespie K, Halley M, Varsava N, Ormond KE, Luft HS, Wilfond BS, Soo-Jin Lee S.

Am J Bioeth. 2018 Apr;18(4):3-20. doi: 10.1080/15265161.2018.1431322.

31.

Pediatric clinical exome/genome sequencing and the engagement process: encouraging active conversation with the older child and adolescent: points to consider-a statement of the American College of Medical Genetics and Genomics (ACMG).

Bush LW, Bartoshesky LE, David KL, Wilfond B, Williams JL, Holm IA; ACMG SELI committee.

Genet Med. 2018 Jul;20(7):692-694. doi: 10.1038/gim.2018.36. Epub 2018 Mar 22. No abstract available.

PMID:
29565417
32.

Barriers and facilitators to clinical trial participation among parents of children with pediatric neuromuscular disorders.

Peay HL, Biesecker BB, Wilfond BS, Jarecki J, Umstead KL, Escolar DM, Tibben A.

Clin Trials. 2018 Apr;15(2):139-148. doi: 10.1177/1740774517751118. Epub 2018 Feb 23.

33.

Time Costs for Genetic Counseling in Preconception Carrier Screening with Genome Sequencing.

Lynch FL, Himes P, Gilmore MJ, Morris EM, Schneider JL, Kauffman TL, Shuster E, Reiss JA, Dickerson JF, Leo MC, Davis JV, McMullen CK, Wilfond BS, Goddard KAB.

J Genet Couns. 2018 Aug;27(4):823-833. doi: 10.1007/s10897-017-0205-5. Epub 2018 Feb 8.

34.

Defining the Scope and Improving the Quality of Clinical Research Ethics Consultation: Response to Open Peer Commentaries About the National Collaborative.

Porter KM, Danis M, Taylor HA, Cho MK, Wilfond BS.

Am J Bioeth. 2018 Feb;18(2):W13-W15. doi: 10.1080/15265161.2017.1413438. No abstract available.

35.

Bringing Social Context Into the Conversation About Pediatric Long-term Ventilation.

Henderson CM, Wilfond BS, Boss RD.

Hosp Pediatr. 2018 Jan 11. pii: hpeds.2016-0168. doi: 10.1542/hpeds.2016-0168. [Epub ahead of print] No abstract available.

36.

The Emergence of Clinical Research Ethics Consultation: Insights From a National Collaborative.

Porter KM, Danis M, Taylor HA, Cho MK, Wilfond BS; Clinical Research Ethics Consultation Collaborative Repository Group.

Am J Bioeth. 2018 Jan;18(1):39-45. doi: 10.1080/15265161.2017.1401156.

37.

Patient actions and reactions after receiving negative results from expanded carrier screening.

Kraft SA, Schneider JL, Leo MC, Kauffman TL, Davis JV, Porter KM, McMullen CK, Wilfond BS, Goddard KAB.

Clin Genet. 2018 May;93(5):962-971. doi: 10.1111/cge.13206. Epub 2018 Mar 13.

38.

Metaphors matter: from biobank to a library of medical information.

Cho MK, Varsava N, Kraft SA, Ashwal G, Gillespie K, Magnus D, Ormond KE, Thomas A, Wilfond BS, Lee SS.

Genet Med. 2018 Aug;20(8):802-805. doi: 10.1038/gim.2017.204. Epub 2017 Dec 21. No abstract available.

PMID:
29267267
39.

Patient perspectives on the use of categories of conditions for decision making about genomic carrier screening results.

Kraft SA, McMullen CK, Porter KM, Kauffman TL, Davis JV, Schneider JL, Goddard KAB, Wilfond BS.

Am J Med Genet A. 2018 Feb;176(2):376-385. doi: 10.1002/ajmg.a.38583. Epub 2017 Dec 18.

PMID:
29250907
40.

Responding to parental requests for life-sustaining treatment - relational potential revisited.

Wightman A, Kett JC, Wilfond BS.

Acta Paediatr. 2018 Jun;107(6):923-926. doi: 10.1111/apa.14179. Epub 2017 Dec 26. No abstract available.

PMID:
29222827
41.

Attending to the Interrelatedness of the Functions of Consent.

Wilfond BS, Kraft SA.

Am J Bioeth. 2017 Dec;17(12):12-13. doi: 10.1080/15265161.2017.1388881. No abstract available.

42.

Expanded Access for Nusinersen in Patients With Spinal Muscular Atropy: Negotiating Limited Data, Limited Alternative Treatments, and Limited Hospital Resources.

Wilfond BS, Morales C, Taylor HA.

Am J Bioeth. 2017 Oct;17(10):66-67. doi: 10.1080/15265161.2017.1366199. No abstract available.

PMID:
29020560
43.

A Trial to Test a Novel Approach to Diabetes Prevention.

Taylor HA, Morales C, Wilfond BS.

Am J Bioeth. 2017 Oct;17(10):74-75. doi: 10.1080/15265161.2017.1366200. No abstract available.

PMID:
29020540
44.

The NextGen Study: patient motivation for participation in genome sequencing for carrier status.

Kauffman TL, Irving SA, Leo MC, Gilmore MJ, Himes P, McMullen CK, Morris E, Schneider J, Wilfond BS, Goddard KAB.

Mol Genet Genomic Med. 2017 Jul 2;5(5):508-515. doi: 10.1002/mgg3.306. eCollection 2017 Sep.

45.

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.

46.

Methodological and Ethical Issues in Pediatric Medication Safety Research.

Carpenter D, Gonzalez D, Retsch-Bogart G, Sleath B, Wilfond B.

Pediatrics. 2017 Sep;140(3). pii: e20170195. doi: 10.1542/peds.2017-0195. Epub 2017 Aug 4.

47.

Comprehension and Choice Under the Revised Common Rule: Improving Informed Consent by Offering Reasons Why Some Enroll in Research and Others Do Not.

Kraft SA, Porter KM, Shah SK, Wilfond BS.

Am J Bioeth. 2017 Jul;17(7):53-55. doi: 10.1080/15265161.2017.1328535. No abstract available.

PMID:
28661747
48.

Research on Medical Practices: Why Patients Consider Participating and the Investigational Misconception.

Kraft SA, Porter KM, Korngiebel DM, James C, Constantine M, Kelley M, Capron AM, Diekema D, Lee SS, Cho MK, Magnus D, Wilfond BS.

IRB. 2017 Jul-Aug;39(4):10-16.

PMID:
30387977
49.

Conflicts of Interest and Distribution of Resources to Community Partners: An Organizational Ethics Dilemma.

Cole AM, Baldwin LM, Keppel GA, Kuwana E, Mollis BL, Wilfond BS.

Prog Community Health Partnersh. 2017;11(1):99-106. doi: 10.1353/cpr.2017.0013.

50.

Should Patients Be Required to Undergo Standard Chemotherapy Before Being Eligible for Novel Phase I Immunotherapy Clinical Trials?

Wilfond BS, Morales C, Taylor HA.

Am J Bioeth. 2017 Apr;17(4):66-67. doi: 10.1080/15265161.2017.1284934. No abstract available.

PMID:
28328380

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