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Learning Health System - Moving from Ethical Frameworks to Practical Implementation.

Morain SR, Majumder MA, McGuire AL.

J Law Med Ethics. 2019 Sep;47(3):454-458. doi: 10.1177/1073110519876180. No abstract available.


Biomedical Citizen Science or Something Else? Reflections on Terms and Definitions.

Guerrini CJ, Wexler A, Zettler PJ, McGuire AL.

Am J Bioeth. 2019 Aug;19(8):17-19. doi: 10.1080/15265161.2019.1619880. No abstract available.


Device Removal Following Brain Implant Research.

Sierra-Mercado D, Zuk P, Beauchamp MS, Sheth SA, Yoshor D, Goodman WK, McGuire AL, Lázaro-Muñoz G.

Neuron. 2019 Sep 4;103(5):759-761. doi: 10.1016/j.neuron.2019.08.024.


Who's on third? Regulation of third-party genetic interpretation services.

Guerrini CJ, Wagner JK, Nelson SC, Javitt GH, McGuire AL.

Genet Med. 2019 Aug 12. doi: 10.1038/s41436-019-0627-6. [Epub ahead of print] Review.


Clarify the HIPAA right of access to individuals' research data.

Guerrini CJ, Botkin JR, McGuire AL.

Nat Biotechnol. 2019 Aug;37(8):850-852. doi: 10.1038/s41587-019-0190-3. No abstract available.


Neuroethics at 15: Keep the Kant but Add More Bacon.

Lázaro-Muñoz G, Zuk P, Pereira S, Kostick K, Torgerson L, Sierra-Mercado D, Majumder M, Blumenthal-Barby J, Storch EA, Goodman WK, McGuire AL.

AJOB Neurosci. 2019 Jul-Sep;10(3):97-100. doi: 10.1080/21507740.2019.1632960. No abstract available.


Computed tomography-guided platinum microcoil lung surgery: A cross-sectional study.

McGuire AL, Vieira A, Grant K, Mayo J, Sedlic T, Choi J, Yee J.

J Thorac Cardiovasc Surg. 2019 Aug;158(2):594-600. doi: 10.1016/j.jtcvs.2019.03.096. Epub 2019 Apr 14.


Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies.

Robinson JO, Wynn J, Biesecker B, Biesecker LG, Bernhardt B, Brothers KB, Chung WK, Christensen KD, Green RC, McGuire AL, Hart MR, Griesemer I, Patrick DL, Rini C, Veenstra D, Cronin AM, Gray SW.

Genet Med. 2019 Jun 13. doi: 10.1038/s41436-019-0565-3. [Epub ahead of print]


Responsibility, culpability, and parental views on genomic testing for seriously ill children.

Malek J, Pereira S, Robinson JO, Gutierrez AM, Slashinski MJ, Parsons DW, Plon SE, McGuire AL.

Genet Med. 2019 Jun 12. doi: 10.1038/s41436-019-0570-6. [Epub ahead of print]


In support of mitochondrial replacement therapy.

Adashi EY, Caplan AL, Capron A, Chapman AR, Cho M, Clayton EW, Cohen IG, Cook-Deegan R, Faden RR, Friedmann T, Gostin LO, Greely HT, Johnston J, Juengst E, King PA, Knowles LP, Lyerly AD, McGuire AL, Moreno JD, Rothenberg K, Truog RD, Walters L.

Nat Med. 2019 Jun;25(6):870-871. doi: 10.1038/s41591-019-0477-4. No abstract available.


Improving recommendations for genomic medicine: building an evolutionary process from clinical practice advisory documents to guidelines.

Burke W, Clayton EW, Wolf SM, Berry SA, Evans BJ, Evans JP, Hall R, Korngiebel D, Laberge AM, LeRoy BS, McGuire AL.

Genet Med. 2019 Jun 4. doi: 10.1038/s41436-019-0549-3. [Epub ahead of print] Review.


The Genomic Medicine Integrative Research Framework: A Conceptual Framework for Conducting Genomic Medicine Research.

Horowitz CR, Orlando LA, Slavotinek AM, Peterson J, Angelo F, Biesecker B, Bonham VL, Cameron LD, Fullerton SM, Gelb BD, Goddard KAB, Hailu B, Hart R, Hindorff LA, Jarvik GP, Kaufman D, Kenny EE, Knight SJ, Koenig BA, Korf BR, Madden E, McGuire AL, Ou J, Wasserstein MP, Robinson M, Leventhal H, Sanderson SC.

Am J Hum Genet. 2019 Jun 6;104(6):1088-1096. doi: 10.1016/j.ajhg.2019.04.006. Epub 2019 May 16.


Who Owns the Data in a Medical Information Commons?

McGuire AL, Roberts J, Aas S, Evans BJ.

J Law Med Ethics. 2019 Mar;47(1):62-69. doi: 10.1177/1073110519840485.


Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.

Deverka PA, Gilmore D, Richmond J, Smith Z, Mangrum R, Koenig BA, Cook-Deegan R, Villanueva AG, Majumder MA, McGuire AL.

J Law Med Ethics. 2019 Mar;47(1):70-87. doi: 10.1177/1073110519840486.


Characterizing the Biomedical Data-Sharing Landscape.

Villanueva AG, Cook-Deegan R, Koenig BA, Deverka PA, Versalovic E, McGuire AL, Majumder MA.

J Law Med Ethics. 2019 Mar;47(1):21-30. doi: 10.1177/1073110519840481.


Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.

McGuire AL, Majumder MA, Villanueva AG, Bardill J, Bollinger JM, Boerwinkle E, Bubela T, Deverka PA, Evans BJ, Garrison NA, Glazer D, Goldstein MM, Greely HT, Kahn SD, Knoppers BM, Koenig BA, Lambright JM, Mattison JE, O'Donnell C, Rai AK, Rodriguez LL, Simoncelli T, Terry SF, Thorogood AM, Watson MS, Wilbanks JT, Cook-Deegan R.

J Law Med Ethics. 2019 Mar;47(1):12-20. doi: 10.1177/1073110519840480.


What is a Medical Information Commons?

Bollinger JM, Zuk PD, Majumder MA, Versalovic E, Villanueva AG, Hsu RL, McGuire AL, Cook-Deegan R.

J Law Med Ethics. 2019 Mar;47(1):41-50. doi: 10.1177/1073110519840483.


Genomic Data-Sharing Practices.

Villanueva AG, Cook-Deegan R, Robinson JO, McGuire AL, Majumder MA.

J Law Med Ethics. 2019 Mar;47(1):31-40. doi: 10.1177/1073110519840482.


Introduction: Sharing Data in a Medical Information Commons.

Cook-Deegan R, Majumder MA, McGuire AL.

J Law Med Ethics. 2019 Mar;47(1):7-11. doi: 10.1177/1073110519840479. No abstract available.


Predispositional genome sequencing in healthy adults: design, participant characteristics, and early outcomes of the PeopleSeq Consortium.

Zoltick ES, Linderman MD, McGinniss MA, Ramos E, Ball MP, Church GM, Leonard DGB, Pereira S, McGuire AL, Caskey CT, Sanderson SC, Schadt EE, Nielsen DE, Crawford SD, Green RC; PeopleSeq Consortium.

Genome Med. 2019 Feb 27;11(1):10. doi: 10.1186/s13073-019-0619-9.


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.


Interpretation of Genomic Sequencing Results in Healthy and Ill Newborns: Results from the BabySeq Project.

Ceyhan-Birsoy O, Murry JB, Machini K, Lebo MS, Yu TW, Fayer S, Genetti CA, Schwartz TS, Agrawal PB, Parad RB, Holm IA, McGuire AL, Green RC, Rehm HL, Beggs AH; BabySeq Project Team.

Am J Hum Genet. 2019 Jan 3;104(1):76-93. doi: 10.1016/j.ajhg.2018.11.016.


Challenging the Current Recommendations for Carrier Testing in Children.

VanNoy GE, Genetti CA, McGuire AL, Green RC, Beggs AH, Holm IA; BabySeq Project Group.

Pediatrics. 2019 Jan;143(Suppl 1):S27-S32. doi: 10.1542/peds.2018-1099F.


Perceived Benefits, Risks, and Utility of Newborn Genomic Sequencing in the BabySeq Project.

Pereira S, Robinson JO, Gutierrez AM, Petersen DK, Hsu RL, Lee CH, Schwartz TS, Holm IA, Beggs AH, Green RC, McGuire AL; BabySeq Project Group.

Pediatrics. 2019 Jan;143(Suppl 1):S6-S13. doi: 10.1542/peds.2018-1099C.


Agents of empathy: How medical interpreters bridge sociocultural gaps in genomic sequencing disclosures with Spanish-speaking families.

Gutierrez AM, Statham EE, Robinson JO, Slashinski MJ, Scollon S, Bergstrom KL, Street RL Jr, Parsons DW, Plon SE, McGuire AL.

Patient Educ Couns. 2019 May;102(5):895-901. doi: 10.1016/j.pec.2018.12.012. Epub 2018 Dec 10.


Genetic Basis for Congenital Heart Disease: Revisited: A Scientific Statement From the American Heart Association.

Pierpont ME, Brueckner M, Chung WK, Garg V, Lacro RV, McGuire AL, Mital S, Priest JR, Pu WT, Roberts A, Ware SM, Gelb BD, Russell MW; American Heart Association Council on Cardiovascular Disease in the Young; Council on Cardiovascular and Stroke Nursing; and Council on Genomic and Precision Medicine.

Circulation. 2018 Nov 20;138(21):e653-e711. doi: 10.1161/CIR.0000000000000606. Review. Erratum in: Circulation. 2018 Nov 20;138(21):e713.


Exome sequencing disclosures in pediatric cancer care: Patterns of communication among oncologists, genetic counselors, and parents.

Scollon S, Majumder MA, Bergstrom K, Wang T, McGuire AL, Robinson JO, Gutierrez AM, Lee CH, Hilsenbeck SG, Plon SE, Parsons DW, Street RL Jr.

Patient Educ Couns. 2019 Apr;102(4):680-686. doi: 10.1016/j.pec.2018.11.007. Epub 2018 Nov 12.


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;:.


Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic technique.

Guerrini CJ, Robinson JO, Petersen D, McGuire AL.

PLoS Biol. 2018 Oct 2;16(10):e2006906. doi: 10.1371/journal.pbio.2006906. eCollection 2018 Oct.


Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project.

Genetti CA, Schwartz TS, Robinson JO, VanNoy GE, Petersen D, Pereira S, Fayer S, Peoples HA, Agrawal PB, Betting WN, Holm IA, McGuire AL, Waisbren SE, Yu TW, Green RC, Beggs AH, Parad RB; BabySeq Project Team.

Genet Med. 2019 Mar;21(3):622-630. doi: 10.1038/s41436-018-0105-6. Epub 2018 Sep 13.


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.


Case Study: Applying Rapid Flow Cytometry Analysis to CAPD Effluent.

Mulroney KT, Hall JM, McGuire AL, Inglis TJJ, Chakera A.

Perit Dial Int. 2018 Sep-Oct;38(5):376-379. doi: 10.3747/pdi.2017.00231.


Citizen science, public policy.

Guerrini CJ, Majumder MA, Lewellyn MJ, McGuire AL.

Science. 2018 Jul 13;361(6398):134-136. doi: 10.1126/science.aar8379. No abstract available.


The BabySeq project: implementing genomic sequencing in newborns.

Holm IA, Agrawal PB, Ceyhan-Birsoy O, Christensen KD, Fayer S, Frankel LA, Genetti CA, Krier JB, LaMay RC, Levy HL, McGuire AL, Parad RB, Park PJ, Pereira S, Rehm HL, Schwartz TS, Waisbren SE, Yu TW; BabySeq Project Team, Green RC, Beggs AH.

BMC Pediatr. 2018 Jul 9;18(1):225. doi: 10.1186/s12887-018-1200-1.


Genealogy databases and the future of criminal investigation.

Ram N, Guerrini CJ, McGuire AL.

Science. 2018 Jun 8;360(6393):1078-1079. doi: 10.1126/science.aau1083. No abstract available.


Constraints on gene patent protection fuel secrecy concerns: a qualitative study.

Guerrini CJ, McGuire AL, Majumder MA, Bollinger JM, Rowan PJ.

J Law Biosci. 2017 Nov 16;4(3):542-564. doi: 10.1093/jlb/lsx034. eCollection 2017 Dec.


Portero versus portador: Spanish interpretation of genomic terminology during whole exome sequencing results disclosure.

Gutierrez AM, Robinson JO, Statham EE, Scollon S, Bergstrom KL, Slashinski MJ, Parsons DW, Plon SE, McGuire AL, Street RL.

Per Med. 2017 Nov;14(6):503-514. doi: 10.2217/pme-2017-0040. Epub 2017 Nov 21.


Reconciling newborn screening and a novel splice variant in BTD associated with partial biotinidase deficiency: a BabySeq Project case report.

Murry JB, Machini K, Ceyhan-Birsoy O, Kritzer A, Krier JB, Lebo MS, Fayer S, Genetti CA, VanNoy GE, Yu TW, Agrawal PB, Parad RB, Holm IA, McGuire AL, Green RC, Beggs AH, Rehm HL; BabySeq Project Team.

Cold Spring Harb Mol Case Stud. 2018 Aug 1;4(4). pii: a002873. doi: 10.1101/mcs.a002873. Print 2018 Aug.


HEADS4: Social Media Screening in Adolescent Primary Care.

Clark DL, Raphael JL, McGuire AL.

Pediatrics. 2018 Jun;141(6). pii: e20173655. doi: 10.1542/peds.2017-3655. Epub 2018 May 1. No abstract available.


The phenotypic spectrum of Xia-Gibbs syndrome.

Jiang Y, Wangler MF, McGuire AL, Lupski JR, Posey JE, Khayat MM, Murdock DR, Sanchez-Pulido L, Ponting CP, Xia F, Hunter JV, Meng Q, Murugan M, Gibbs RA.

Am J Med Genet A. 2018 Jun;176(6):1315-1326. doi: 10.1002/ajmg.a.38699. Epub 2018 Apr 25.


Continued access to investigational brain implants.

Lázaro-Muñoz G, Yoshor D, Beauchamp MS, Goodman WK, McGuire AL.

Nat Rev Neurosci. 2018 Jun;19(6):317-318. doi: 10.1038/s41583-018-0004-5. No abstract available.


Short-term costs of integrating whole-genome sequencing into primary care and cardiology settings: a pilot randomized trial.

Christensen KD, Vassy JL, Phillips KA, Blout CL, Azzariti DR, Lu CY, Robinson JO, Lee K, Douglas MP, Yeh JM, Machini K, Stout NK, Rehm HL, McGuire AL, Green RC, Dukhovny D; MedSeq Project.

Genet Med. 2018 Dec;20(12):1544-1553. doi: 10.1038/gim.2018.35. Epub 2018 Mar 22.


Precise capture of thoracic morbidity and mortality: Essential to the process and culture of quality improvement.

McGuire AL, Yee J.

J Thorac Cardiovasc Surg. 2018 Mar;155(3):1309-1310. doi: 10.1016/j.jtcvs.2017.10.046. No abstract available.


How Primary Care Providers Talk to Patients about Genome Sequencing Results: Risk, Rationale, and Recommendation.

Vassy JL, Davis JK, Kirby C, Richardson IJ, Green RC, McGuire AL, Ubel PA.

J Gen Intern Med. 2018 Jun;33(6):877-885. doi: 10.1007/s11606-017-4295-4. Epub 2018 Jan 26.


Ectopic thymoma managed by neck dissection & video-assisted thoracoscopic thymectomy.

Peel JK, Prisman E, Ng TL, McGuire AL.

J Thorac Dis. 2017 Dec;9(12):E1050-E1053. doi: 10.21037/jtd.2017.10.141.


Patient understanding of, satisfaction with, and perceived utility of whole-genome sequencing: findings from the MedSeq Project.

Roberts JS, Robinson JO, Diamond PM, Bharadwaj A, Christensen KD, Lee KB, Green RC, McGuire AL; MedSeq Project team.

Genet Med. 2018 Sep;20(9):1069-1076. doi: 10.1038/gim.2017.223. Epub 2018 Jan 4.


Alienation, Quality of Life, and DBS for Depression.

Zuk P, McGuire AL, Lázaro-Muñoz G.

AJOB Neurosci. 2018;9(4):223-225. doi: 10.1080/21507740.2018.1561543. Epub 2019 Feb 25. No abstract available.


Should we be concerned about preserving agency and personal identity in patients with Adaptive Deep Brain Stimulation systems?

Lázaro-Muñoz G, McGuire AL, Goodman WK.

AJOB Neurosci. 2017;8(2):73-75. doi: 10.1080/21507740.2017.1320337. Epub 2017 Jun 16. No abstract available.


Barriers to clinical adoption of next-generation sequencing: a policy Delphi panel's solutions.

Messner DA, Koay P, Al Naber J, Cook-Deegan R, Majumder M, Javitt G, Dvoskin R, Bollinger J, Curnutte M, McGuire AL.

Per Med. 2017;14(4):339-354. doi: 10.2217/pme-2016-0104. Epub 2017 Jun 23.

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