Publications
Challenging Cases in Clinical Research Ethics
Edited by Benjamin S. Wilfond, Devan M. Duenas, Liza-Marie Johnson and Holly A. Tabor.
1st Edition, CRC Press. Published November 23, 2023.
Clinical research ethics consultation has emerged in the last 15 years as a service to those involved in clinical research who face challenging issues for which more than one course of action may be justified. To respond to a growing field and need for opportunities to share knowledge and experience, the Clinical Research Ethics Consultation Collaborative, established in 2014, holds monthly webinars for its 90 members to present their most challenging cases to each other and engage in substantive discussion. Every year, the group selects the four most interesting cases with two to four accompanying commentaries for publication in the American Journal of Bioethics.
This book brings together 28 cases and related commentaries under a range of common themes, creating a permanent collection in book format that encourages and supports readers to gain a better understanding of the ethical challenges that they may face, and providing them with a convenient and reflective resource to reference in their own deliberations.
Learn more about or purchase Challenging Cases in Research Ethics.
Bioethics Faculty and Staff Publications
The Treuman Katz Center for Pediatric Bioethics is dedicated to publishing scholarly work and research in peer-reviewed journals. This list contains the most recent work of our faculty and staff.
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2021
Bogetz JF, Lemmon ME. Pediatric Palliative Care for Children With Severe Neurological Impairment and Their Families. Journal of Pain Symptom Management. 2021 Jan 22:S0885-3924(21)00029-4.
Bogetz J, Kett JC, Wightman A. Preparing for medical decision-making in response to concerns about suffering in children with severe neurologic impairment. Acta Paediatrica. 2021 Mar;110(3):755-758.
Bogetz JF, Weiss EM, Opel DJ. Use of Cognitive Shortcuts in Decision-making for Children With Severe Neurologic Impairment. Pediatrics. 2021 Mar;147(3):e20200930.
Macauley R, Elster N, Fanaroff JM; COMMITTEE ON BIOETHICS (Opel, DJ, Diekema, DS), COMMITTEE ON MEDICAL LIABILITY AND RISK MANAGEMENT. Ethical Considerations in Pediatricians' Use of Social Media. Pediatrics. 2021 Mar;147(3):e2020049685.
Montague E, Day TE, Barry D, Brumm M, McAdie A, Cooper AB, Wignall J, Erdman S, Núñez D, Diekema D, Danks D. The case for information fiduciaries: The implementation of a data ethics checklist at Seattle Children's Hospital. Journal of the American Medical Informatics Association. 2021 Mar 1;28(3):650-652.
Kett JC. The Shameful Grief of Unimportant Losses. Journal of Palliative Medicine. 2021 Jan;24(1):137.
Niyibizi NK, Speight CD, Gregor C, Ko YA, Kraft SA, Mitchell AR, Phillips BG, Porter KM, Shah SK, Sugarman J, Wilfond BS, Dickert NW. Public attitudes toward an authorization for contact program for clinical research. Journal of the American Medical Informatics Association. 2021 Feb 15;28(2):354-359.
Kraft SA, Porter KM, Duenas DM, Guerra C, Joseph G, Lee SS, Shipman KJ, Allen J, Eubanks D, Kauffman TL, Lindberg NM, Anderson K, Zepp JM, Gilmore MJ, Mittendorf KF, Shuster E, Muessig KR, Arnold B, Goddard KAB, Wilfond BS. Participant Reactions to a Literacy-Focused, Web-Based Informed Consent Approach for a Genomic Implementation Study. AJOB Empirical Bioethics. 2021 Jan-Mar;12(1):1-11.
Lee BM, Wightman A, Clark JD. Author Response. Pediatrics. 2020 Sep;146(3):e2020008144C.
Olszewski AE, Scott M, Patneaude A, Weiss EM, Wightman A. Race and Power at the Bedside: Counter Storytelling in Clinical Ethics Consultation. The American Journal of Bioethics. 2021 Feb;21(2):77-79.
Kramer DB, Opel DJ, Parasidis E, Mello MM. Choices in a Crisis - Individual Preferences among SARS-CoV-2 Vaccines. The New England Journal of Medicine. 2021 Apr 29;384(17):e62. Epub 2021 Mar 3.
Navin MC, Jason A, Opel DJ. Author's Response Reply to Dr. Terk. Pediatrics. 2021 Mar;147(3):e2020048967B.
Commissioners of the Lancet Commission on Vaccine Refusal, Acceptance, and Demand in the USA (Doug Opel). Announcing the Lancet Commission on Vaccine Refusal, Acceptance, and Demand in the USA. Lancet. 2021 Mar 27;397(10280):1165-1167. Epub 2021 Feb 24.
Salmon D, Opel DJ, Dudley MZ, Brewer J, Breiman R. Reflections On Governance, Communication, And Equity: Challenges And Opportunities In COVID-19 Vaccination. Health Affairs (Millwood). 2021 Mar;40(3):419-425. Epub 2021 Feb 4.
Opel DJ, Diekema DS, Ross LF. Should We Mandate a COVID-19 Vaccine for Children? JAMA Pediatrics. 2021 Feb 1;175(2):125-126.
Weiss EM, Olszewski AE, Guttmann KF, Magnus BE, Li S, Shah AR, Juul SE, Wu YW, Ahmad KA, Bendel-Stenzel E, Isaza NA, Lampland AL, Mathur AM, Rao R, Riley D, Russell DG, Salih ZNI, Torr CB, Weitkamp JH, Anani UE, Chang T, Dudley J, Flibotte J, Havrilla EM, Kathen CM, O'Kane AC, Perez K, Stanley BJ, Wilfond BS, Shah SK. Parental Factors Associated With the Decision to Participate in a Neonatal Clinical Trial. JAMA Network Open. 2021 Jan 4;4(1):e2032106.
Yu E, Wightman A. Pediatric kidney transplant in undocumented immigrants: An American perspectives. Pediatric Transplant. 2021 Feb;25(1):e13788. Epub 2020 Jul 28.
Butler CR, Wightman A, Richards CA, Laundry RS, Taylor JS, Hebert PL, Liu CF, O'Hare AM. Thematic Analysis of the Health Records of a National Sample of US Veterans With Advanced Kidney Disease Evaluated for Transplant. JAMA Internal Medicine. 2021 Feb 1;181(2):212-219.
Boss RD, Henderson CM, Raisanen JC, Jabre NA, Shipman K, Wilfond BS. Family Experiences Deciding For and Against Pediatric Home Ventilation. The Journal of Pediatrics. 2021 Feb;229:223-231.
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2020
Bogetz J, Rosenberg A, Curtis JR, Creutzfeldt CJ. Applying an Adaptive Communication Approach to Medical Decision Making. Journal of Pain Symptom Management. 2020 Jan;59(1):e4-e7. Epub 2019 Oct 3.
Dorfman MV, Clark JD, Brogan TV. ECLS for Legionella: All Ages Welcome in the ELSO Registry. ASAIO Journal. 2020 Feb;66(2):226-229.
Wolf ER, O'Neil J, Pecsok J, Etz RS, Opel DJ, Wasserman R, Krist AH. Caregiver and Clinician Perspectives on Missed Well-Child Visits. Annals of Family Medicine. 2020 Jan;18(1):30-34.
Trowbridge A, Bamat T, Griffis H, McConathey E, Feudtner C, Walter JK. Pediatric Resident Experience Caring for Children at the End of Life in a Children's Hospital. Academic Pediatrics. 2020 Jan - Feb;20(1):81-88. Epub 2019 Jul 31.
Wightman A, Wilfond BS, Diekema D, Paquette E, Shah S. Relationships help make life worth living. Journal of Medical Ethics. 2020 Jan;46(1):22-23. Epub 2019 Nov 15.
Bogetz JF. Why I Work on Christmas. Journal of Palliative Medicine. 2020 Feb;23(2):294-295.
Diekema DS. Hans Jonas and the Ethics of Human Subjects Research. The Hastings Center Report. 2020 Jan;50(1):8-9.
Duenas DM, Wilfond BS, Johnson LM. Clearing Muddy Waters: The Need to Reconceptualize Minor Increase over Minimal Risk in Pediatric Rare Disease Research. The American Journal of Bioethics. 2020 May;20(4):8-10.
Johnson LM, Duenas DM, Wilfond BS. Ethical Drug Development for Rare Childhood Diseases: When There Are Limited But Promising Data in Adults, How to Choose Between Safety or Efficacy Studies? The American Journal of Bioethics. 2020 May;20(4):111-113..
Kett JC, Cunningham ML, Wightman A. The legacy of language: Disfigurement bias in the NICU. Acta Paediatrica. 2020 May;109(5):880-882.
Kraft SA, Duenas DM, Lewis H, Shah SK. Bridging the Researcher-Participant Gap: A Research Agenda to Build Effective Research Relationships. The American Journal of Bioethics. 2020 Jun;20(5):31-33.
MacDuffie KE, Turner-Brown L, Estes AM, Wilfond BS, Dager SR, Pandey J, Zwaigenbaum L, Botteron KN, Pruett JR, Piven J, Peay HL; IBIS Network ."If He Has it, We Know What to Do": Parent Perspectives on Familial Risk for Autism Spectrum Disorder. Journal of Pediatric Psychology. 2020 Mar 1;45(2):121-130.
Bryan MA, Hofstetter AM, Simon TD, Zhou C, Williams DJ, Tyler A, Kenyon CC, Vachani JG, Opel DJ, Mangione-Smith R. Vaccination Status and Adherence to Quality Measures for Acute Respiratory Tract Illnesses. Hospital Pediatrics. 2020 Mar;10(3):199-205.
Porter KM, Stevens A, Wilfond BS. Flexibility Required: Balancing the Interests of Children and Risk in Drug Development for Rare Pediatric Conditions. The American Journal of Bioethics. 2020 April;20(4):116-118.
Lee BM, Trowbridge A, McEvoy M, Wightman A, Kraft SA, Clark JD. Can a Parent Refuse the Brain Death Examination? Pediatrics. 2020 Apr;145(4). pii: e20192340.
Valentine GC, Perez K, Weiss EM. Community Empowerment Through Education: The Inherent Foundation of Promoting Solidarity in Global Health Research. The American Journal of Bioethics. 2020 Jun;20(5):77-79.
Guttmann KF, Wu YW, Juul SE, Weiss EM. Consent Related Challenges for Neonatal Clinical Trials. The American Journal of Bioethics.. 2020 Jun;20(5):38-40.
Wilfond BS, Duenas DM, Johnson LM. Greater Than Minimal Risk, No Direct Benefit - Bridging Drug Trials and Novel Therapy in Pediatric Populations. The American Journal of Bioethics. 2020 May;20(4):102-103.
Wilfond BS. Pediatric Drug Labeling and Imperfect Information. The Hastings Center Report. 2020 Jan;50(1):3.
Janvier A, Farlow B, Barrington KJ, Bourque CJ, Brazg T, Wilfond B. Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study. Palliative Medicine. 2020 Mar;34(3):262-271.
Yu JH, Juengst E. Do Groups Have Moral Standing in Unregulated mHealth Research? The Journal of Law, Medicine & Ethics. 2020 Mar;48(1_suppl):122-128.
Ramirez FD, Bogetz JF, Kufeld M, Yee LM. Professional Bereavement Photography in the Setting of Perinatal Loss: A Qualitative Analysis. Global Pediatric Health. 2019 Jun 13;6:2333794X19854941.
Bogetz JF. Behind This Face Shield, I See You. Journal of Palliative Medicine. 2020 Jun;23(6):870.
Laventhal N, Basak R, Dell ML, Diekema D, Elster N, Geis G, Mercurio M, Opel D, Shalowitz D, Statter M, Macauley R.The Ethics of Creating a Resource Allocation Strategy During the COVID-19 Pandemic.Pediatrics. 2020 Jul;146(1):e20201243.
Shah SK, Miller FG, Darton TC, Duenas D, Emerson C, Lynch HF, Jamrozik E, Jecker NS, Kamuya D, Kapulu M, Kimmelman J, MacKay D, Memoli MJ, Murphy SC, Palacios R, Richie TL, Roestenberg M, Saxena A, Saylor K, Selgelid MJ, Vaswani V, Rid A. Unnecessary hesitancy on human vaccine tests-Response. Science. 2020 Jul 10;369(6500):151.
Shah SK, Miller FG, Darton TC, Duenas D, Emerson C, Lynch HF, Jamrozik E, Jecker NS, Kamuya D, Kapulu M, Kimmelman J, MacKay D, Memoli MJ, Murphy SC, Palacios R, Richie TL, Roestenberg M, Saxena A, Saylor K, Selgelid MJ, Vaswani V, Rid A. Ethics of controlled human infection to address COVID-19. Science. 2020 May 22;368(6493):832-834.
Kraft SA, McMullen C, Lindberg NM, Bui D, Shipman K, Anderson K, Joseph G, Duenas DM, Porter KM, Kauffman TL, Koomas A, Ransom CL, Jackson P, Goddard KAB, Wilfond BS, Lee SS .Integrating stakeholder feedback in translational genomics research: an ethnographic analysis of a study protocol's evolution. Genetic Medicine. 2020 Jun;22(6):1094-1101.
MacDuffie KE, Shen MD, Dager SR, Styner MA, Kim SH, Paterson S, Pandey J, St John T, Elison JT, Wolff JJ, Swanson MR, Botteron KN, Zwaigenbaum L, Piven J, Estes AM. Sleep Onset Problems and Subcortical Development in Infants Later Diagnosed With Autism Spectrum Disorder. American Journal of Psychiatry. 2020 Jun 1;177(6):518-525.
Statter MB, Noritz G; COMMITTEE ON BIOETHICS (Opel, DJ, Diekema, DS), COUNCIL ON CHILDREN WITH DISABILITIES. Children With Intellectual and Developmental Disabilities as Organ Transplantation Recipients. Pediatrics. 2020 May;145(5):e20200625.
Kalantar-Zadeh K, Wightman A, Liao S Ensuring Choice for People with Kidney Failure - Dialysis, Supportive Care, and Hope.. New England Journal Medicine. 2020 Jul 9;383(2):99.
Goldberg AM, Bobrowski A, Wightman A. Crowdsourcing in pediatric transplant studies-An opportunity for reflection on research ethics. Pediatric Transplant. 2019 Dec;23(8):e13603.
Grayson S, Doerr M, Yu JH. Developing pathways for community-led research with big data: a content analysis of stakeholder interviews. Health Research Policy Systems. 2020 Jul 8;18(1):76.
Berkman E, McGuire JK. Remote Telesimulation: Standardizing Clinical Research Staff Training From a Distance. Pediatric Critical Care Medicine. 2020 Dec;21(12):1089-1090.
Bogetz JF, Revette A, Rosenberg AR, DeCourcey DJ. "I Could Never Prepare for Something Like the Death of My Own Child": Parental Perspectives on Preparedness at End of Life for Children with Complex Chronic Conditions. Journal of Pain Symptom Management. 2020 Dec;60(6):1154-1162.e1
Jonas D, Scanlon C, Schmidt L, Bogetz J. Creating a Seat at the Table: How Family Meetings Elucidate the Palliative Care Social Work Role. Journal of Palliative Medicine. 2020 Dec;23(12):1688-1691.
Bogetz JF, Trowbridge A, Kingsley J, Taylor M, Rosenberg AR, Barton KS. "It's My Job to Love Him": Parenting Adolescents and Young Adults With Advanced Cancer. Pediatrics. 2020 Dec;146(6):e2020006353.
Bogetz J, Wilfond BS, Wightman A. Moving Beyond Using the Term Poor Prognosis in Children With Severe Neurological Impairment: A Linguistic Shortcut Better Avoided. JAMA Pediatrics. 2019 Nov 25.
Young J, Nour NM, Macauley RC, Narang SK, Johnson-Agbakwu C; SECTION ON GLOBAL HEALTH; COMMITTEE ON MEDICAL LIABILITY AND RISK MANAGEMENT; COMMITTEE ON BIOETHICS (Opel, DJ, Diekema, DS). Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls. Pediatrics. 2020 Aug;146(2):e20201012 Epub 2020 Jul 27.
Diekema DS. Adolescent Brain Development and Medical Decision-making. Pediatrics. 2020 Aug;146(Suppl 1):S18-S24.
Sanseau E, Thomas A, Daniel R, Augenstein J, Diekema D. Wilderness Medicine (Hypothermia, Dehydration, and Ankle Injury): A Pediatric Simulation Case for Medical Trainees. MedEdPORTAL. 2020 May 15;16:10900.
Antommaria AHM, Gibb TS, McGuire AL, Wolpe PR, Wynia MK, Applewhite MK, Caplan A, Diekema DS, Hester DM, Lehmann LS, McLeod-Sordjan R, Schiff T, Tabor HK, Wieten SE, Eberl JT. Ventilator Triage Policies During the COVID-19 Pandemic at U.S. Hospitals Associated With Members of the Association of Bioethics Program Directors. Annals of Internal Medicine. 2020 Aug 4;173(3):188-194.
Guerin RM, Diekema DS, Hizlan S, Weise KL. Do Clinical Ethics Fellowships Prepare Trainees for their First Jobs? A National Survey of Former Clinical Ethics Fellows. The Journal of Clinical Ethics. 2020 Winter;31(4):372-380.
Johnson LM, Duenas DM, Wilfond BS. Click Here to Complete This Survey: Online Research, Adolescents, and Parental Consent. American Journal of Bioethics. 2020 Oct;20(10):82-83.
Murphy SC, Duenas DM, Richie TL, Shah SK. Reexamining the categorical exclusion of pediatric participants from controlled human infection trials. Bioethics. 2020 Oct;34(8):785-796. Epub 2020 Jul 26.
Gentry KR, Feldman RM, Opel DJ. Pediatric anesthesiologists' attitudes about neurotoxicity and the FDA drug safety communication. Paediatric Anaesthesia. 2020 Jun;30(6):708-709. Epub 2020 Apr 28.
O'Reilly-Shah VN, Gentry KR, Van Cleve W, Kendale SM, Jabaley CS, Long DR. The COVID-19 Pandemic Highlights Shortcomings in US Health Care Informatics Infrastructure: A Call to Action. Anesthesia Analgesia. 2020 Aug;131(2):340-344.
O'Reilly-Shah VN, Gentry KR, Walters AM, Zivot J, Anderson CT, Tighe PJ. Bias and ethical considerations in machine learning and the automation of perioperative risk assessment. British Journal of Anaesthesia. 2020 Dec;125(6):843-846. Epub 2020 Aug 21.
Kett JC. Who Is the Next "Baby Doe?" From Trisomy 21 to Trisomy 13 and 18 and Beyond. Pediatrics. 2020 Aug;146(Suppl 1):S9-S12.
Campelia GD, Kett JC, Wightman A. Relational suffering and the moral authority of love and care. Theoretical Medicine and Bioethics. 2020 Aug;41(4):165-178.
Kraft SA. Respect and Trustworthiness in the Patient-Provider-Machine Relationship: Applying a Relational Lens to Machine Learning Healthcare Applications. The American Journal of Bioethics. 2020 Nov;20(11):51-53.
Kraft SA, Porter KM, Duenas DM, Sullivan E, Rowland M, Saelens BE, Wilfond BS, Shah SK. Assessing Parent Decisions About Child Participation in a Behavioral Health Intervention Study and Utility of Informed Consent Forms. JAMA Network Open. 2020 Jul 1;3(7):e209296.
Kraft SA, McMullen C, Lindberg NM, Bui D, Shipman K, Anderson K, Joseph G, Duenas DM, Porter KM, Kauffman TL, Koomas A, Ransom CL, Jackson P, Goddard KAB, Wilfond BS, Lee SS. Integrating stakeholder feedback in translational genomics research: an ethnographic analysis of a study protocol's evolution. Genetics in Medicine. 2020 Jun;22(6):1094-1101. Epub 2020 Feb 24.
Lee BM, Wightman A, Clark JD. Author Response. Pediatrics. 2020 Sep;146(3):e2020008144C.
Lewis-Newby M, Sellers DE, Meyer EC, Solomon MZ, Zurakowski D, Truog RD. Location of Clinician-Family Communication at the End of Life in the Pediatric Intensive Care Unit and Clinician Perception of Communication Quality. Journal of Palliative Medicine. 2020 Aug;23(8):1052-1059. Epub 2020 Mar 17.
MacDuffie KE. A "salad bowl" approach to neuroethics collaboration. AJOB Neuroscience. 2020;11(3):201-203. Epub 2020 Jul 27.
MacDuffie KE, Kleinhans NM, Stout K, Wilfond BS. Protection Versus Progress: The Challenge of Research on Cannabis Use During Pregnancy. Pediatrics. 2020 Aug;146(Suppl 1):S93-S98.
MacDuffie KE, Munson J, Greenson J, Ward TM, Rogers SJ, Dawson G, Estes A. Sleep Problems and Trajectories of Restricted and Repetitive Behaviors in Children with Neurodevelopmental Disabilities. Journal of Autism and Developmental Disorders. 2020 Nov;50(11):3844-3856.
Montenegro RE My Name Is Not "Interpreter". .JAMA. 2020 May 5;323(17):1700-1701.
Olszewski AE. Dear fears: Vaccines and ebiribiri. Vaccine. 2020 Feb 11;38(7):1579-1580. Epub 2020 Jan 17.
Navin MC, Wasserman JA, Opel DJ. Reasons to Accept Vaccine Refusers in Primary Care. Pediatrics. 2020 Dec;146(6):e20201801. Epub 2020 Nov 6.
Opel DJ, Marcuse EK. The Toils, Trials, and Tribulations of Research on Childhood Vaccine Acceptance. Pediatrics. 2020 Nov;146(5):e2020013342. Epub 2020 Oct 12.
Opel DJ, Salmon DA, Marcuse EK. Building Trust to Achieve Confidence in COVID-19 Vaccines. JAMA Network Open. 2020 Oct 1;3(10):e2025672.
Opel DJ, Robinson JD, Spielvogle H, Spina C, Garrett K, Dempsey AF, Perreira C, Dickinson M, Zhou C, Pahud B, Taylor JA, O'Leary ST. 'Presumptively Initiating Vaccines and Optimizing Talk with Motivational Interviewing' (PIVOT with MI) trial: a protocol for a cluster randomised controlled trial of a clinician vaccine communication intervention. BMJ Open. 2020 Aug 11;10(8):e039299.
Laventhal NT, Basak RB, Dell ML, Elster N, Geis G, Macauley RC, Mercurio MR, Opel DJ, Shalowitz DI, Statter MB, Diekema DS. Professional Obligations of Clinicians and Institutions in Pediatric Care Settings during a Public Health Crisis: A Review. The Journal of Pediatrics. 2020 Sep;224:10-15. Epub 2020 Jun 23.
Opel DJ, Henrikson NB, Lepere K, Robinson JD. Progress in Evidence-Based Communication About Childhood Vaccines. Academic Pediatrics. 2020 Aug;20(6):729-730. Epub 2020 Feb 10.
Nekrasova E, Stockwell MS, Localio R, Shults J, Wynn C, Shone LP, Berrigan L, Kolff C, Griffith M, Johnson A, Torres A, Opel DJ, Fiks AG. Vaccine hesitancy and influenza beliefs among parents of children requiring a second dose of influenza vaccine in a season: An American Academy of Pediatrics (AAP) Pediatric Research in Office Settings (PROS) study. Human Vaccine & Immunotherapeutics. 2020 May 3;16(5):1070-1077. Epub 2020 Feb 4.
Cowfer B, McGrath C, Trowbridge A. Teaching Pediatric Palliative Care Communication Skills to Fourth-Year Medical Students Through Role-Play. MedEdPORTAL. 2020 Oct 16;16:10991.
Neubauer K, Williams EP, Donohue PK, Weiss EM, Lewis-Newby M, Boss RD. Diagnosis to death: family experiences of paediatric heart disease. Cardiology in the Young. 2020 Nov;30(11):1672-1678. Epub 2020 Aug 24.
Butler CR, Wong SPY, Wightman AG, O'Hare AM. US Clinicians' Experiences and Perspectives on Resource Limitation and Patient Care During the COVID-19 Pandemic. JAMA Network Open. 2020 Nov 2;3(11):e2027315.
Wightman A, Freeman M. An Organ for My Child: Public Appeals for Limited Resources. Pediatrics. 2020 Aug;146(Suppl 1):S42-S47.
Wightman A, Diekema D. Introduction: Defining Cases in Pediatric Bioethics. Pediatrics. 2020 Aug;146(Suppl 1):S1-S2.
Jecker NS, Wightman AG, Diekema DS. Prioritizing Frontline Workers during the COVID-19 Pandemic. The American Journal of Bioethics. 2020 Jul;20(7):128-132.
Chen A, Ahmad M, Flescher A, Freeman WL, Little S, Martins PN, Veatch RM, Wightman A, Ladin K. Access to transplantation for persons with intellectual disability: Strategies for nondiscrimination. American Journal of Transplantation. 2020 Aug;20(8):2009-2016. Epub 2020 Jan 18.
Wilfond BS, Porter KM. Reimagining the Goal of Informed Consent to Help Patients Make Decisions About Research. American Journal of Bioethics. 2020 May;20(5):22-23.
Wilfond BS, Duenas DM, Johnson LM. Conflicts of Interest and Recommendations for Clinical Treatments That Benefit Researchers. American Journal of Bioethics. 2020 Oct;20(10):90-91.
Wilfond BS, Duenas DM, Johnson LM. Greater Than Minimal Risk, No Direct Benefit - Bridging Drug Trials and Novel Therapy in Pediatric Populations. American Journal of Bioethics. 2020 May;20(4):102-103.
McMullen C, Holup J, Davis JV, Foley P, Jacob L, Cottrell E, Bui DP, Wilfond B, Goddard KA. Discordant Patient and Clinician Perspectives on the Potential Value of Genetic Services in Safety-Net Clinics. Journal of Health Care for the Poor and Underserved. 2020;31(3):1347-1363.
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2019
Berkman ER, Clark JD, Diekema DS, Lewis-Newby M. "We Can Do Anything but We Can't Do Everything": Exploring the Perceived Impact of International Pediatric Programs on U.S. PICUs. Frontiers in Pediatrics. 2019 Nov 15;7:470. eCollection 2019.
Garrison NA, Barton KS, Porter KM, Mai T, Burke W, Carroll SR. Access and Management: Indigenous Perspectives on Genomic Data Sharing. Ethnicity & Disease. 2019 Dec 12;29(Suppl 3):659-668. eCollection 2019.
Dionne-Odom JN, Currie ER, Johnston EE, Rosenberg AR. Supporting Family Caregivers of Adult and Pediatric Persons with Leukemia. Seminars in Oncology Nursing. 2019 Dec;35(6):150954. Epub 2019 Nov 18. Review.
Feudtner C, Rosenberg AR, Boss RD, Wiener L, Lyon ME, Hinds PS, Bluebond-Langner M, Wolfe J. Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop. J Pain Symptom Manage. 2019 Nov;58(5):909-917.e3. Epub 2019 Aug 21.
Diekema DS. Decision Making on Behalf of Children: Understanding the Role of the Harm Principle. Journal of Clinical Ethics. 2019 Fall;30(3):207-212.
Armsby AJ, Bombard Y, Garrison NA, Halpern-Felsher BL, Ormond KE. Attitudes of Members of Genetics Professional Societies Toward Human Gene Editing CRISPR Journal. 2019 Oct;2(5):331-339.
MacDuffie KE, Goering S. Neurotechnologies Cannot Seize Thoughts: A Call for Caution in Nomenclature. AJOB Neuroscience. 2019 Jan-Mar;10(1):23-25.
Estes A, Swain DM, MacDuffie KE. The effects of early autism intervention on parents and family adaptive functioning. Pediatric Medicine. 2019 Jun;2. pii: 21.
Kraft SA, Garrison NA. An Ethical Case for Dual-Role Consent: Increasing Research Diversity as a Matter of Respect and Justice. American Journal Bioethics. 2019 Apr;19(4):44-46.
Rosenberg AR, Yi-Frazier JP. How to Balance “Scalable” with “Individualized” Palliative Care Interventions: The Story of the Promoting Resilience in Stress Management Intervention. Journal of Palliative Medicine. 2019 Oct;22(10):1178-1179.
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. Rethinking the “open future” argument against predictive genetic testing of children. Genetics in Medicine. 2019 Oct;21(10):2190-2198.
Childerhose JE, Finnila CR, Yu JH, Koenig BA, McEwen J, Berg SL, Wilfond BS, Appelbaum PS, Brothers KB. Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some. Ethics & Human Research. 2019 Sep;41(5):2-15.
Diekema DS. Decision Making on Behalf of Children: Understanding the Role of the Harm Principle. Journal of Clinical Ethics. 2019 Fall;30(3):207-212.
Armsby AJ, Bombard Y, Garrison NA, Halpern-Felsher BL, Ormond KE. Attitudes of Members of Genetics Professional Societies Toward Human Gene Editing CRISPR Journal. 2019 Oct;2(5):331-339.
MacDuffie KE, Goering S. Neurotechnologies Cannot Seize Thoughts: A Call for Caution in Nomenclature. AJOB Neuroscience. 2019 Jan-Mar;10(1):23-25.
Rosenberg AR, Yi-Frazier JP. How to Balance “Scalable” with “Individualized” Palliative Care Interventions: The Story of the Promoting Resilience in Stress Management Intervention. Journal of Palliative Medicine. 2019 Oct;22(10):1178-1179.
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. Rethinking the “open future” argument against predictive genetic testing of children. Genetics in Medicine. 2019 Oct;21(10):2190-2198.
Childerhose JE, Finnila CR, Yu JH, Koenig BA, McEwen J, Berg SL, Wilfond BS, Appelbaum PS, Brothers KB. Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some. Ethics & Human Research. 2019 Sep;41(5):2-15.
Bogetz JF. Stag. Journal of Palliative Medicine. 2019 Sep;22(9):1164.
Garrison NA, Hudson M, Ballantyne LL, Garba I, Martinez A, Taualii M, Arbour L, Caron NR, Rainie SC. Genomic Research Through an Indigenous Lens: Understanding the Expectations. Annual Review of Genomics and Human Genetics. 2019 Aug 31;20:495-517.
DeCou CR, Shah SK, Porter KM. Improving Care for Suicidal Patients While Protecting Human Subjects: Addressing Ethical Challenges in Mental Health Research Involving Emergency Medical Services Providers. American Journal of Bioethics. 2019 Oct;19(10):99-101.
Rosenberg AR, Bradford MC, Junkins CC, Taylor M, Zhou C, Sherr N, Kross E, Curtis JR, Yi-Frazier JP. Effect of the Promoting Resilience in Stress Management Intervention for Parents of Children With Cancer (PRISM-P): A Randomized Clinical Trial. JAMA Network Open. 2019 Sep 4;2(9):e1911578.
Estes A, Swain DM, MacDuffie KE. The effects of early autism intervention on parents and family adaptive functioning. Pediatric Medicine. 2019 Jun;2. pii: 21.
Wightman A, Diekema D. Parental Decision Making and the Limitations of the Equivalence Thesis. American Journal of Bioethics. 2019 Mar;19(3):43-45.
Wilfond BS, Porter KM. Justifying Investigator/Clinician Consent When The Physician-Patient Relationship Can Support Better Research Decision-Making. American Journal of Bioethics. 2019 Apr;19(4):26-28.
Wilfond BS, Zabrowski J, Johnson LM. A Pragmatic Trial of Suicide Risk Assessment and Ambulance Transport Decision Making Among Emergency Medical Services Providers: Implications for Patient Consent. American Journal of Bioethics. 2019 Oct;19(10):97-98.
Johnson LM, Zabrowski J, Wilfond BS. A Cluster Randomized Trial to Screen for Abusive Head Trauma in the Pediatric Intensive Care Unit-How to Manage Site-Specific Evidence of Racial/Ethnic Disparity. American Journal of Bioethics. 2019 Oct;19(10):108-109.
Childerhose JE, Finnila CR, Yu JH, Koenig BA, McEwen J, Berg SL, Wilfond BS, Appelbaum PS, Brothers KB. Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some. Ethics & Human Research. 2019 Sep;41(5):2-15.
Iwata M, Han S, Hays R, Doorenbos AZ. Predictors of Depression and Anxiety in Family Members 3 Months After Child's Admission to a Pediatric ICU. The American Journal of Hospice and Palliative Care. 2019 Oct;36(10):841-850.
Scott VP, Opel DJ, Reifler J, Rikin S, Pethe K, Barrett A, Stockwell MS.
Office-Based Educational Handout for Influenza Vaccination: A Randomized Controlled Trial. Pediatrics. 2019 Aug;144(2). pii: e20182580.
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. Consent for clinical genome sequencing: considerations from the Clinical Sequencing Exploratory Research Consortium. Personalized Medicine. 2019 Jul;16(4):325-333.
Barton KS, Wingerson A, Barzilay JR, Tabor HK. "Before Facebook and before social media…we did not know anybody else that had this": parent perspectives on internet and social media use during the pediatric clinical genetic testing process. Journal of Community Genetics. 2019 Jul;10(3):375-383.
Ramirez FD, Bogetz JF, Kufeld M, Yee LM. Professional Bereavement Photography in the Setting of Perinatal Loss: A Qualitative Analysis. Global Pediatric Health. 2019 Jun 13;6:2333794X19854941.
Bogetz JF, Marks A, Root MC, Purser L, Pantilat SZ. Development of the Pediatric Palliative Care Quality Network. Journal of Palliative Medicine. 2019 Jul;22(7):747-748.
Lau N, Bradford MC, Steineck A, Junkins CC, Yi-Frazier JP, McCauley E, Rosenberg AR. Exploratory analysis of treatment response trajectories in the PRISM trial: Models of psychosocial care. Psycho-Oncology. 2019 Jul;28(7):1470-1476.
Silverman RD, Opel DJ, Omer SB. Vaccination over Parental Objection - Should Adolescents Be Allowed to Consent to Receiving Vaccines? New England Journal of Medicine. 2019 Jul 11;381(2):104-106.
Walker AJ, Lewis FM, Lin Y, Zahlis E, Rosenberg AR. Trying to Feel Normal Again: Early Survivorship for Adolescent Cancer Survivors. Cancer Nursing. 2019 Jul/Aug;42(4):E11-E21.
Wightman A, Kett J, Campelia G, Wilfond BS. The Relational Potential Standard: Rethinking the Ethical Justification for Life-Sustaining Treatment for Children with Profound Cognitive Disabilities. The Hastings Center Report. 2019 May;49(3):18-25.
Bombard Y, Brothers KB, Fitzgerald-Butt S, Garrison NA, Jamal L, James CA, Jarvik GP, McCormick JB, Nelson TN, Ormond KE, Rehm HL, Richer J, Souzeau E, Vassy JL, Wagner JK, Levy HP. The Responsibility to Recontact Research Participants after Reinterpretation of Genetic and Genomic Research Results. American Journal of Human Genetics. 2019 Apr 4;104(4):578-595.
Kraft SA, Duenas D, Wilfond BS, Goddard KAB. The evolving landscape of expanded carrier screening: challenges and opportunities. Genetics in Medicine. 2019 Apr;21(4):790-797.
Rosenberg AR, Bona K, Coker T, Feudtner C, Houston K, Ibrahim A, Macauley R, Wolfe J, Hays R. Pediatric Palliative Care in the Multicultural Context: Findings From a Workshop Conference. Journal of Pain and Symptom Management. 2019 Apr;57(4):846-855.e2.
Johnston EE, Bogetz J, Saynina O, Chamberlain LJ, Bhatia S, Sanders L. Disparities in Inpatient Intensity of End-of-Life Care for Complex Chronic Conditions. Pediatrics. 2019 May;143(5). pii: e20182228
Lepere K, Etsekson N, Opel DJ. Provider Self-Disclosure During the Childhood Vaccine Discussion. Clinical Pediatrics. 2018 Dec 5:9922818817828.
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. Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. The Journal of Law, Medicine & Ethics. 2019 Mar;47(1):12-20.
Ketterl TG, Syrjala KL, Casillas J, Jacobs LA, Palmer SC, McCabe MS, Ganz PA, Overholser L, Partridge A, Rajotte EJ, Rosenberg AR, Risendal B, Rosenstein DL, Baker KS. Lasting effects of cancer and its treatment on employment and finances in adolescent and young adult cancer survivors. Cancer. 2019 Jun 1;125(11):1908-1917.
Weiss EM, Magnus BE, Coughlin K. Factors associated with decision-making preferences among parents of infants in neonatal intensive care. Acta Paediatrica. 2019 May;108(5):967-968.
Kraft SA, Garrison NA. An Ethical Case for Dual-Role Consent: Increasing Research Diversity as a Matter of Respect and Justice. American Journal Bioethics. 2019 Apr;19(4):44-46.
Johnson LM, Zabrowski J, Wilfond BS. Should Research Participants Be Notified About Results of Currently Unknown but Potential Significance? The American Journal of Bioethics. 2019 Apr;19(4):73-74.
Wilfond BS, Zabrowski J, Johnson LM. The Limitations of "Boilerplate" Language in Informed Consent: Single IRB Review of Multisite Genetic Research in Military Personnel. The American Journal of Bioethics. 2019 Apr;19(4):81-82.
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. Correction: Secondary findings from clinical genomic sequencing: prevalence, patient perspectives, family history assessment, and health-care costs from a multisite study. Genet Med. 2019 May;21(5):1261-1262.
Kraft SA, Duenas DM, Kublin JG, Shipman KJ, Murphy SC, Shah SK. Exploring Ethical Concerns About Human Challenge Studies: A Qualitative Study of Controlled Human Malaria Infection Study Participants' Motivations and Attitudes. Journal of Empirical Research on Human Research Ethics. 2019 Feb;14(1):49-60.
Rosenberg AR, Bona K, Coker T, Feudtner C, Houston K, Ibrahim A, Macauley R, Wolfe J, Hays R. Pediatric Palliative Care in the Multi-Cultural Context: Findings from a workshop conference. Journal of Pain and Symptom Management. 2019 Jan 24. pii: S0885-3924(19)30038-7.
Weiss EM, Clark JD, Heike CL, Rosenberg AR, Shah SK, Wilfond BS, Opel DJ. Gaps in the Implementation of Shared Decision-making: Illustrative Cases. Pediatrics. 2019 Mar;143(3). pii: e20183055.
Wightman A, Zimmerman CT, Neul S, Lepere K, Cedars K, Opel D. Caregiver Experience in Pediatric Dialysis. Pediatrics. 2019 Feb;143(2). pii: e20182102..
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. Including ELSI research questions in newborn screening pilot studies. Genetics in Medicine. 2019 Mar;21(3):525-533.
Wightman A, Bradford MC, Smith J. Health-related quality of life changes following renal transplantation in children. Pediatric Transplantation. 2019 Mar;23(2):e13333.
Batten JN, Kruse KE, Kraft SA, Fishbeyn B, Magnus DC. What Does the Word “Treatable” Mean? Implications for Communication and Decision-Making in Critical Illness. Critical Care Medicine. 2019 Mar;47(3):369-376.
Bogetz JF, Root MC, Purser L, Torkildson C. Comparing Health Care Provider-Perceived Barriers to Pediatric Palliative Care Fifteen Years Ago and Today. Journal of Palliative Medicine. 2019 Feb;22(2):145-151.
Garrison NA, Brothers KB, Goldenberg AJ, Lynch JA. Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism. The American Journal of Bioethics. 2019 Jan;19(1):51-63.
Lee SS, Cho MK, Kraft SA, Varsava N, Gillespie K, Ormond KE, Wilfond BS, Magnus D. “I don't want to be Henrietta Lacks”: Diverse patient perspectives on donating biospecimens for precision medicine research. Genetics in Medicine. 2019 Jan;21(1):107-113.
Rosenberg AR, Bradford MC, Barton KS, McCauley E, Curtis JR, Wolfe J, Baker KS, Yi-Frazier JP. Hope and benefit finding: Results from the PRISM randomized controlled trial. Pediatric Blood & Cancer. 2019 Jan;66(1):e27485.
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2018
Mann PC, Weiss EM, Seltzer RR, Dodge RAB, Boss RD, Lantos JD. Child Abuse, Incarceration, and Decisions About Life-sustaining Treatment. Pediatrics. 2018 Dec;142(6). pii: e20180430.
Figueroa Gray M, Ludman EJ, Beatty T, Rosenberg AR, Wernli KJ. Balancing hope and risk among adolescent and young adult cancer patients with late-stage cancer: A qualitative interview study. Journal of Adolescent and Young Adult Oncology. 2018 Dec;7(6):673-680.
Jordan M, Keefer PM, Lee YA, Meade K, Snaman JM, Wolfe J, Kamal A, Rosenberg A. Top ten tips palliative care clinicians should know about caring for children. Journal of Palliative Medicine. 2018 Dec;21(12):1783-1789.
Lau N, Bona K, Steineck A, Rosenberg AR. What we did not learn from an exploratory analysis of economic hardship in newly diagnosed adolescents and young adults with cancer. Pediatric Blood & Cancer. 2018 Dec;65(12):e27411.
Bryan MA, Hofstetter AM, deHart MP, Zhou C, Opel DJ. Accuracy of Provider-Documented Child Immunization Status at Hospital Presentation for Acute Respiratory Illness. Hospital Pediatrics. 2018 Dec;8(12):769-777.
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. Molecular Genetics & Genomic Medicine. 2018 Nov;6(6):898-909.
Wallis KE, Weiss EM. Distinguishing Primary and Secondary Early Intervention Programs: Implications for Families, Clinicians, and Policymakers. The American Journal of Bioethics. 2018 Nov;18(11):65-67.
Morrison W, Clark JD, Lewis-Newby M, Kon AA. Titrating clinician directiveness in serious pediatric illness. Pediatrics. 2018 Nov;142(Suppl 3):S178-S186.
Opel DJ. A 4-step framework for shared decision-making in pediatrics. Pediatrics. 2018 Nov;142(Suppl 3):S149-S156.
Wolf ER, Hochheimer CJ, Sabo RT, DeVoe J, Wasserman R, Geissal E, Opel DJ, Warren N, Puro J, O’Neil J, Pecsok J, Krist AH. Gaps in well-child care attendance among primary care clinics serving low-income families. Pediatrics. 2018 Nov;142(5):e20174019.
Wo SR, Largent EA, Brosco J, Rosenberg AR, Goodman KW, Lantos JD. Should foreigners get costly lifesaving treatments in the United States? Pediatrics. 2018 Nov;142(5):e20180175.
Miller KE, Coleman RD, Eisenberg L, Henriksen J, Lantos JD, Weiss EM. Unilateral withdrawal of life-sustaining therapy in a severely impaired child. Pediatrics. 2018 Nov;142(5):e20180131.
Rosenberg AR, Bradford MC, McCauley E, Curtis JR, Wolfe J, Baker KS, Yi-Frazier JP. Promoting resilience in adolescents and young adults with cancer: Results from the PRISM randomized controlled trial. Cancer. 2018 Oct;124(19):3909-3917.
Ilowite MF, Al-Sayegh H, Ma C, Dussel V, Rosenberg AR, Feudtner C, Kang TI, Wolfe J, Bona K. The relationship between household income and patient-reported symptom distress and quality of life in children with advanced cancer: A report from the PediQUEST study. Cancer. 2018 Oct;124(19):3934-3941.
Hofstetter AM, Simon TD, Lepere K, Ranade D, Strelitz B, Englund JA, Opel DJ. Parental vaccine hesitancy and declination of influenza vaccination among hospitalized children. Hospital Pediatrics. 2018 Oct;8(10):628-635.
Taylor HA, Morales C, Johnson LM, Wilfond BS. 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. American Journal of Bioethics. 2018 Oct;18(10):58-59.
Wilfond BS, Morales C, Johnson LM, Taylor HA. Ethical considerations for unblinding a participant's assignment to interpret a resolved adverse event. American Journal of Bioethics. 2018 Oct;18(10):66-67.
Wilfond BS, Porter KM, Creevy KE, Kaeberlein M, Promislow D. Research to promote longevity and health span in companion dogs: A pediatric perspective. American Journal of Bioethics. 2018 Oct;18(10):64-65.
Leyenaar JK and Bogetz JF. Child mortality in the United States: Bridging palliative care and public health perspectives. Pediatrics. 2018;142(4):e20181927.
Cho MK, Varsava N, Kraft SA, Ashwal G, Gillespie K, Magnus D, Ormond KE, Thomas A, Wilfond BS, Lee SS. Metaphors matter: From biobank to a library of medical information. Genetics in Medicine. 2018;20:802-805.
Trowbridge A, Walter JK, McConathey E, Morrison W, Feudtner C. Modes of death within a children’s hospital. Pediatrics. 2018;142(4):e20174182.
Barton KS, Tabor HK, Starks H, Garrison NA, Laurino M, Burke W. Pathways from autism spectrum disorder diagnosis to genetic testing. Genetics in Medicine. 2018;20:737-744.
Nelson SC, Yu JH, Wagner JK, Harrell TM, Royal CD, Bamshad MJ. A content analysis of the views of genetics professionals on race, ancestry, and genetics. AJOB Empirical Bioethics. 2018 Oct-Dec;9(4):222-234.
Boss RD, Falck A, Goloff N, Hutton N, Miles A, Shapiro M, Weiss EM, Donohue PK; Pediatric Chronic Critical Illness Collaborative. Low prevalence of palliative care and ethics consultations for children with chronic critical illness. Acta Paediatrica. 2018 Oct;107(10):1832-1833.
Bogetz JF, Hauer J. Certainty of Decisions: A Process-Based Model for Decision Making for Children With Severe Neurological Impairment. Clinical Pediatrics. 2018 Sep;57(10):1227-1231.
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. A case for expanding carrier testing to include actionable X-linked disorders. Clinical Case Reports. 2018 Sep;6(11):2092-2095.
Ullrich CK, Dussel V, Orellana L, Kang TI, Rosenberg AR, Feudtner C, Wolfe J. Self-reported fatigue in children with advanced cancer: Results of the PediQUEST study. Cancer. 2018 Sept;124(18):3776-3783.
Ifekwunigwe JO, Wagner JK, Yu JH, Harrell TM, Bamshad MJ, Royal CD. A qualitative analysis of how anthropologists interpret the race construct. American Anthropologist. 2017 Sep;119(3):422-434.
Antommaria AHM, Brothers KB, Myers JA, Feygin YB, Aufox SA, Brilliant MH, Conway P, Fullerton SM, Garrison NA, Horowitz CR, Jarvik GP, Li R, Ludman EJ, McCarty CA, McCormick JB, Mercaldo ND, Myers MF, Sanderson SC, Shrubsole MJ, Schildcrout JS, Williams JL, Smith ME, Clayton EW, Holm IA. Parents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey. AJOB Empirical Bioethics. 2018 Sep 21:1-15.
MacDonald NE, Harmon S, Dube E, Steenbeek A, Crowcroft N, Opel DJ, Faour D, Leask J, Butler R. Mandatory infant & childhood immunization: Rationales, issues and knowledge gaps. Vaccine. 2018 Sep 18;36(39):5811-5818.
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. American Journal of Human Genetics. 2018 Sep 6;103(3):319-327.
Rosenberg AR. Escaping Sonder. Journal of Pain and Symptom Management. 2018 Sept;56(3):e1-e2.
Gentry K, Wightman A. How should refusal of tracheostomy as part of an adolescent's perioperative planned intubation be regarded? AMA Journal of Ethics. 2018 Aug 1;20(8):E683-689.
Hester DM, Lang KR, Garrison NA, Diekema DS. Agreed: The harm principle cannot replace the best interest standard … but the best interest standard cannot replace the harm principle either. American Journal of Bioethics. 2018 Aug;18(8):38-40.
Lewis-Newby M, Clark JD, Butt WW, Dryden-Palmer K, Parshuram CS, Truog RD. When a child dies in the PICU despite ongoing life support. Pediatric Critical Care Medicine. 2018 Aug;19(8S Suppl 2):S33-S40.
Desai AD, Jacob-Files EA, Lowry SJ, Opel DJ, Mangione-Smith R, Britto MT, Howard WJ. Development of a caregiver-reported experience measure for pediatric hospital-to-home transitions. Health Services Research. 2018 Aug;53(S1):3084-3106.
Wightman A, Goldberg A, Diekema D. Fairness, severe intellectual disability, and the special case of transplantation. Pediatric Transplantation. 2018 Aug;22(5):e1322.
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. Time costs for genetic counseling in preconception carrier screening with genome sequencing. Journal Genetic Counseling. 2018 Aug;27:823.
Brothers KB, Wilfond BS. Research consent at the age of majority: Preferable but not obligatory. Pediatrics. 2018 Aug;142(2):e20173038.
October TW, Dizon ZB, Arnold RM, Rosenberg AR. Characteristics of Physician Empathetic Statements During Pediatric Intensive Care Conferences With Family Members: A Qualitative Study. JAMA Network Open. 2018 Jul 6;1(3):e180351.
Wagner AD, Shah SK, Njuguna IN, Porter KM, Neary J, Maleche-Obimbo E, Bosire R, Wamalwa DC, John-Stewart GC, Slyker JA. Financial incentives to motivate pediatric hiv testing-assessing the potential for coercion, inducement, and voluntariness.
Journal of Acquired Immune Deficiency Syndrome. 2018 Jul 1;78(3):e15-e18.Gentry KR, Opel DJ. Reply to Gentry, Katherine; Lepere, Katherine; Opel, Douglas, regarding their comment 'Informed Consent in Pediatric Anesthesiology'. Paediatric Anaesthesia. 2018 Jul;28(7):674.
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. Informed consent for a neonatal clinical trial: parental experiences and perspectives. Journal of Perinatology. 2018 Jul;38(7):865-872.
Claw KG, Anderson MZ, Begay RL, Tsosie KS, Fox K, Garrison NA, Summer internship for INdigenous peoples in Genomics (SING) Consortium. A framework for enhancing ethical genomic research with Indigenous communities.Nature Communications. 2018 Jul;9(1):2957.
Yi-Frazier JP, Cochrane K, Whitlock K, Rosenberg AR, Pascual M, Beauregard N, Mitrovich C, Panlasigui N, Pihoker C. Trajectories of acute diabetes-specific stress in adolescents with type 1 diabetes and their caregivers within the first year of diagnosis. Journal of Pediatric Psychology. 2018 Jul;43(6):645–653.
Shah SK, Allison SM, Kapogiannis BG, Black R, Dawson L, Erbelding E. Advancing independent adolescent consent for participation in HIV prevention research. Journal of Medical Ethics. 2018 Jul;44:431-433.
Wagner AD, Shah SK, Njuguna IN, Porter KM, Neary J, Maleche-Obimbo E, Bosire R, Wamalwa DC, John-Stewart GC, Slyker JA. Financial incentives to motivate pediatric HIV testing – assessing the potential for coercion, inducement, and voluntariness [Letter to the Editor]. Journal of Acquired Immune Deficiency Syndrome. 2018 Jul;78(3):e15–e18.
Clarke EV, Schneider JL, Lynch F, Kauffman TL, Leo MC, Rosales AG, Dickerson JF, Shuster E, Wilfond BS, Goddard KAB. Assessment of willingness to pay for expanded carrier screening among women and couples undergoing preconception carrier screening. PLoS One. 2018 Jul;13(7):e0200139.
Wagner AD, Shah SK, Njuguna IN, Porter KM, Neary J, Maleche-Obimbo E, Bosire R, Wamalwa DC, John-Stewart GC, Slyker JA. Financial incentives to motivate pediatric hiv testing-assessing the potential for coercion, inducement, and voluntariness.
Journal of Acquired Immune Deficiency Syndrome. 2018 Jul 1;78(3):e15-e18.Mullin J, Bogetz J. Point: Moral distress can indicate inappropriate care at end-of-Life. Psychooncology. 2018 Jun;27(6):1490-1492.
Kelly-Blake K, Garrison NA, Fletcher FE, Ajegba B, Smith N, Brafford M, Bogdan-Lovis E. Rationales for expanding minority physician representation in the workforce: a scoping review. Medical Education. 2018 Jun;52(9):925-935.
Barton KS, Tate T, Lau N, Taliesin KB, Waldman ED, Rosenberg AR. "I'm not a spiritual person." How hope might facilitate conversations about spirituality among teens and young adults with cancer. Journal of Pain and Symptom Management. 2018 Jun;55(6):1599-1608.
Richards CA, Starks H, O'Connor MR, Bourget E, Lindhorst T, Hays R, Doorenbos AZ. When and why do neonatal and pediatric critical care physicians consult palliative care? American Journal of Hospice & Palliative Care. 2018 Jun;35(6):840-846.
Wightman A, Kett JC, Wilfond B. Responding to parental requests for life-sustaining treatment—relational potential revisited. Acta Paediatrica. 2018 Jun;107(6):923-926.
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. Preconception carrier screening by genome sequencing: Results from the clinical laboratory. American Journal of Human Genetics. 2018 Jun 7;102(6):1078-1089.
Opel DJ, Zhou C, Robinson JD, Henrikson N, Lepere K, Mangione-Smith R, Taylor JA. Impact of childhood vaccine discussion format over time on immunization status. Academic Pediatrics. 2018 May-Jun;18(4):430-436.
Fallat ME, Hardy C; SECTION ON SURGERY; SECTION ON ANESTHESIOLOGY AND PAIN MEDICINE; COMMITTEE ON BIOETHICS [Diekema, D.S. and Opel, D.J.]. Interpretation of do not attempt resuscitation orders for children requiring anesthesia and surgery. Pediatrics. 2018 May;141(5):e20180598.
Jecker NS, Wightman AG, Rosenberg AR, Diekema DS. Fairly allocating space in an immunotherapy production facility: Reply to critics. American Journal of Bioethics. 2018 May;18(5):W9-W12.
Kraft SA, Cho MK, Gillespie K, Varsava N, Ormond KE, Wilfond BS, Lee SS. Trustworthiness in untrustworthy times: response to open peer commentaries on beyond consent. American Journal of Bioethics. 2018 May;18(5):W6-W8.
Weiss EM, Xie D, Cook N, Coughlin K, Joffe S. Characteristics associated with preferences for parent-centered decision making in neonatal intensive care. JAMA Pediatrics. 2018 May 1;172(5):461-468.
Krick J, Chabra S. On "end-of-life decision making for parents of extremely preterm infants." Journal of Obstetric, Gynecologic, and Neonatal Nursing. 2018 May;47(3):415-416.
Wilfond BS, Kauffman TL, Jarvik GP, Reiss JA, Richards CS, McMullen C, Gilmore M, Himes P, Kraft S, Porter KM, Schneider JL, Punj S, Leo MC, Dickerson JF, Lynch FL, Clarke E, Rope AF, Lutz K, Goddard KAB. Lessons learned from a study of genomics-based carrier screening for reproductive decision making. Health Affairs. 2018 May;37(5):809-816.
Shah SK, Porter K. Conflicts Between Regulations and Ethical Principles: Resolving Ambiguity in Favor of the Ethically Preferable Outcome. American Journal of Bioethics. 2018 Apr;18(4):93-94.
Richards CA, Starks H, O'Connor MR, Bourget E, Hays RM, Doorenbos AZ. Physicians perceptions of shared decision-making in neonatal and pediatric critical care. American Journal of Hospice & Palliative Care. 2018 Apr;35(4):669-676.
Salehi P, Divall SA, Crouch JM, Hopkinson RA, Kroon L, Lawrence J, Wilfond BS, Inwards-Breland DJ. Review of current care models for transgender youth and application to the development of a multidisciplinary clinic - The Seattle Children's hospital experience. Pediatric Endocrinology Reviews. 2018 Apr;15(4):280-290.
Weiss EM, Fiester A. Response to open peer commentaries on "from 'longshot' to 'fantasy': Obligations to pediatric patients and families when last-ditch medical efforts fail". American Journal of Bioethics. 2018 Apr;18(4):W8-W9.
Bardill J, Bader AC, Garrison NA, Bolnick DA, Raff JA, Walker A, Malhi RS, the Summer internship for INdigenous peoples in Genomics (SING) Consortium. Advancing the ethics of paleogenomics. Science. 2018 Apr; 360(6387):384-385.
Sabatello M, Callier S, Garrison NA, Cohn EG. Trust, precision medicine research, and equitable participation of underserved populations. American Journal of Bioethics. 2018 Apr;18(4):34-36.
Gentry KR. Review of Ronald W. Dworkin, medical catastrophe: Confessions of an anesthesiologist. American Journal of Bioethics. 2018 Apr;18(4):W1-W3.
Kraft SA, Cho MK, Gillespie K, Halley M, Varsava N, Ormond KE, Luft HS, Wilfond BS, Soo-Jin Lee S. Beyond consent: building trusting relationships with diverse populations in precision medicine research. American Journal of Bioethics. 2018 Apr;18(4):3-20.
Jecker NS, Wightman AG, Rosenberg AR, Diekema DS. Ethical guidance for selecting clinical trials to receive limited space in an immunotherapy production facility. American Journal of Bioethics. 2018 Apr;18(4):58-67.
Stone AL, Karlson CW, Heathcote LC, Rosenberg AR, Palermo TM. Topical review: Pain in survivors of pediatric cancer: Applying a prevention framework. Journal of Pediatric Psychology. 2018 Apr 1;43(3):237-242.
Weaver MS, Rosenberg AR, Tager J, Wichman CS, Wiener L. A summary of pediatric palliative care team structure and services as reported by centers caring for children with cancer. Journal of Palliative Medicine. 2018 Apr;21(4):452-462.
Shah SK, Porter K. Conflicts between regulations and ethical principles: Resolving ambiguity in favor of the ethically preferable outcome. American Journal of Bioethics. 2018 Apr;18(4):93-94.
Peay HL, Biesecker BB, Wilfond BS, Jarecki J, Umstead KL, Escolar DM, Tibben A. Barriers and facilitators to clinical trial participation among parents of children with pediatric neuromuscular disorders. Clinical Trials. 2018 Apr;15(2):139-148.
Lee B, Rosenberg AR. Don’t let perfect be the enemy of good: How to improve prognostic communication in pediatric oncology. Cancer. 2018;124(8):3879-3881.
Aramesh K, Arima H, Gardiner D, Shah SK. An international legal review of the relationship between brain death and organ transplantation. Journal of Clinical Ethics. 2018 Spring;29(1):31-42.
Rosenberg AR, Bradford MC, Bona K, Shaffer ML, Wolfe J, Baker KS, Lau N, Yi-Frazier J. Hope, distress, and later quality of life among adolescent and young adults with cancer. Journal of Psychosocial Oncology. 2018 Mar-Apr;36(2):137-144.
Bush LW, Bartoshesky LE, David KL, Wilfond B, Williams JL, Holm IA. 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). Genetics in Medicine. 2018 Mar;20:692-694.
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. Pragmatic tools for sharing genomic research results with the relatives of living and deceased research participants. Journal of Law, Medicine & Ethics. 2018 Mar;46(1):87-109.
Rosenberg AR, Weaver M, Wiener L. Who is responsible for delivering palliative care to children with cancer? Pediatric Blood and Cancer. 2018 Mar;65(3).
Kraft SA, Doerr M. Engaging populations underrepresented in research through novel approaches to consent. American Journal of Human Genetics, Part C. 2018 Mar;178(1):75-80.
Spector-Bagdady K, Prince AER, Yu JH, Appelbaum PS. Analysis of state laws on informed consent for clinical genetic testing in an era of genomic sequencing. American Journal of Medical Genetics Part C. 2018 Mar;178(1):81-88.
Cunningham RM, Minard CG, Guffey D, Swaim LS, Opel DJ, Boom JA. Prevalence of vaccine hesitancy among expectant mothers in Houston, Texas. Acta Paediatrica. 2018 Mar;18(2):154-160.
Rosenberg AR, Orellana L, Wolfe J, Dussel V. The limitations of "How are you feeling?" Journal of Pain and Symptom Management. 2018 Mar;55(3):e6-e8.
Rosenberg AR. Seeking professional resilience. Pediatrics. 2018;141(3):e20172388.
Blumenthal-Barby J, Opel DJ. Nudge or grudge? Choice architecture and parental decision-making. Hastings Center Report. 2018 Mar;48(2):33-39.
Opel DJ, Sonne JA, Mello MM. Vaccination without litigation - addressing religious objections to hospital influenza-vaccination mandates. New England Journal of Medicine. 2018 Mar; 378(9):785-788.
Rosenberg AR, Weaver MS, Wiener L. Who is responsible for delivering palliative care to children with cancer? Pediatric Blood & Cancer. 2018 Mar;65(3):e26889.
Shah SK, Rosenberg AR, Diekema DS. Charlie Gard and the limits of the harm principle - Reply. JAMA Pediatr. 2018 Mar 1;172(3):301.
Henderson CM, Wilfond BS, Boss, RD. Bringing social context into the conversation about pediatric long-term ventilation. Hospital Pediatrics. 2018 Feb;8(2):102-108.
Wiener L, Rosenberg AR, Lichtenthal WG, Tager J, Weaver MS. Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings. Palliative & Supportive Care. 2018 Feb:1-6.
Nelson KE, Feinstein JA, Gerhardt CA, Rosenberg AR, Widger K, Faerber JA, Feudtner C.Emerging methodologies in pediatric palliative care research: Six case studies [A review]. Children (Basel). 2018 Feb 26;5(3):E32.
Barton KS, Tate T, Lau N, Taliesin KB, Waldman ED, Rosenberg AR. "I'm not a spiritual person." How hope might facilitate conversations about spirituality among teens and young adults with cancer. Journal of Pain and Symptom Management. 2018 Feb;S0885-3924(18):30043-30045.
Kraft SA, McMullen CK, Porter KM, Kauffman TL, Davis JV, Schneider JL, Goddard KAB, Wilfond BS. Patient perspectives on the use of categories of conditions for decision making about genomic carrier screening results. American Journal of Medical Genetics Part A. 2018 Feb;176(2):376-385.
Porter KM, Danis M, Taylor HA, Cho MK, Wilfond BS. Defining the scope and improving the quality of clinical research ethics consultation: Response to open peer commentaries about the National Collaborative. American Journal of Bioethics. 2018 Feb;18(2):W13-W15.
Wightman A, Diekema D, Goldberg A. Consideration of children with intellectual disability as candidates for solid organ transplantation-A practice in evolution. Pediatric Transplantation. 2018 Feb;22(1):e13091.
Gentry KR, Arnup SJ, Disma N, Dorris L, de Graaff JC, Hunyady A, Morton NS, Withington DE, McCann ME, Davidson AJ, Lynn AM; GAS Trial Consortium. Enrollment challenges in multicenter, international studies: The example of the GAS trial. Paediatric Anaesthesia. 2018 Jan;29(1):51-58.
Opel DJ, Zhou C, Robinson JD, Henrikson N, Lepere K, Mangione-Smith R, Taylor JA. Impact of the childhood vaccine discussion format over time on immunization status. Academic Pediatrics. 2018 Jan;S1876-2859(18):30001-30009.
Coats H, Bourget E, Starks H, Lindhorst T, Saiki-Craighill S, Curtis JR, Hays R, Doorenbos A. Nurses' reflections on benefits and challenges of implementing family-centered care in pediatric intensive care units.American Journal of Critical Care. 2018 Jan;27(1):52-58.
Porter KM, Danis M, Taylor HA, Cho MK, Wilfond BS; Clinical Research Ethics Consultation Collaborative Repository Group. The emergence of clinical research ethics consultation: Insights from a national collaborative. American Journal of Bioethics. 2018 Jan;18(1):39-45.
Ananth P, Ma C, Al-Sayegh H, Kroon L, Klein V, Wharton C, Hallez E, Braun I, Michelson K, Rosenberg AR, London W, Wolfe J. Provider perspectives on use of medical marijuana in children with cancer. Pediatrics. 2018 Jan;141(1):e20170559.
Coccia PF, Pappo AS, Beaupin L, Borges VF, Borinstein SC, Chugh R, Dinner S, Folbrecht J, Frazier AL, Goldsby R, Gubin A, Hayashi R, Huang MS, Link MP, Livingston JA, Matloub Y, Millard F, Oeffinger KC, Puccetti D, Reed D, Robinson S, Rosenberg AR, Sanft T, Spraker-Perlman HL, von Mehren M, Wechsler DS, Whelan KF, Yeager N, Gurski LA, Shead DA. Adolescent and young adult oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology. Journal of the National Comprehensive Cancer Network. 2018 Jan;16(1):66-97.
Weiss EM, Fiester A. From "longshot" to "fantasy": Obligations to pediatric patients and families when last-ditch medical efforts fail. American Journal of Bioethics. 2018 Jan;18(1):3-11.
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. Genetics in Medicine. 2018;20:545-553.
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2017
Wendler D, Shah SK. Fair benefits and its critics: Who is right? Journal of Health Care Law and Policy. 2017;20(1):1-25.
Wagner JK, Yu JH, Ifekwunigwe JO, Harrell TM, Bamshad MJ, Royal CM. Anthropologists’ views on race, ancestry, and genetics. American Journal of Physical Anthropology. 2017;162(2):318-327.
Tabor HK, Jamal SM, Yu JH, Crouch JM, Shankar AG, Dent KM, Anderson N, Miller DA, Futral BT, Bamshad MJ. My46: A Web-based tool for self-guided management of genomic test results in research and clinical settings. Genetics in Medicine.2017;19(4):467-475.
Ifekwunigwe JO, Wagner JK, Yu JH, Bamshad MJ, Royal CM. A qualitative analysis of how anthropologists interpret the race construct. American Anthropologist. 2017;119(3):422-434.
Bowen DJ, Hyams T, Goodman M, West KM, Harris-Wai J, Yu JH. Systematic review of quantitative measures of stakeholder engagement [Review]. Clinical Translational Science. 2017;10(5):314-336.
Kohler J, Turbitt E, Lewis KL, Wilfond BS, Jamal L, Peay HL, Biesecker LG, Biesecker BB. Defining personal utility in genomics: A Delphi study. Clinical Genetics. 2017;92(3):290-297.
Claw KG, Lippert D, Bardill J, Cordova A, Fox K, Yracheta JM, Bader AC, Bolnick DA, Malhi RS, TallBear K, and Garrison NA. Chaco Canyon dig unearths ethical concerns. Human Biology. 2017;89(3):177-180.
Wightman A, Horslen S. Gatekeeping and bias against risk in solid organ transplant. Journal of Pediatric Ethics. 2017;1(1).
Jecker N, Wightman A, Rosenberg A, Diekema D. Ethical issues in selecting participants for clinical trials with breakthrough therapies. Journal of Medical Ethics. 2017;43(6):391-400.
Sanderson SC, Brothers KB, Mercaldo ND, Clayton EW, Antommaria AHM, Aufox SA, Brilliant MH, Campos D, Carrell DS, Connolly J, Conway P, Fullerton SM, Garrison NA, Horowitz CR, Jarvik GP, Kaufman D, Kitchner TE, Li R, Ludman EJ, McCarty CA, McCormick JB, McManus VD, Myers MF, Scrol A, Williams JL, Shrubsole MJ, Schildcrout JS, Smith ME, Holm IA. Public attitudes towards consent and data sharing in biobank research: A large multi-site experimental survey in the US. American Journal of Human Genetics. 2017;100(3):414-427.
Fohner AE, Garrison NA, Austin MA, Burke W. Response to Koeller et al. Genetics in Medicine. 2017 Dec;19:12.
Wilfond BS, Kraft SA. Attending to the interrelatedness of the functions of consent. The American Journal of Bioethics. 2017 Dec;17(12):12-13.
Tandon K, Tate T, Kirkpatrick JN. Pacemaker reuse in low-income/middle-income countries: moral duty or dangerous precedent? Heart. 2017;103:1846-1847.
Gentry KR, Lepere K, Opel DJ. Informed Consent in Pediatric Anesthesiology. Paediatric Anaesthesiology. 2017 Dec;27(12):1253-1260.
Rosenberg AR, Orellana L, Wolfe J, Dussel V. The limitations of "How are you feeling?" Journal of Pain and Symptom Management. 2017 Nov;S0885-3924(17):30645-30650.
Rosenberg AR, Starks H, Unguru Y, Feudtner C, Diekema D. Truth telling in the setting of cultural differences and incurable pediatric illness: A Review. JAMA Pediatrics. 2017 Nov;171(11):1113-1119.
Johnston EE, Rosenberg AR, Kamal AH. Pediatric-specific end-of-life care quality measures: An unmet need of a vulnerable population. Journal of Oncology Practice. 2017 Oct;13(10):e874-e880.
Lee BM, Rosenberg AR. Don't let perfect be the enemy of good: How to improve prognostic communication in pediatric oncology. Cancer. 2017 Oct 15;123(20):3879-3881.
Shah SK, Rosenberg AR, Diekema DS. Charlie Gard and the limits of best interests. JAMA Pediatrics. 2017 Oct 1;171(10):937-938.
Gilmore MJ, Schneider J, Davis JV, Kauffman TL, Leo MC, Bergen K, Reiss JA, Himes P, Morris E, Young C, McMullen C, Wilfond BS, Goddard KA. Reasons for declining preconception expanded carrier screening using genome sequencing. Journal of Genetic Counseling. Oct 2017;26(5):971-979.
Wilfond BS, Morales C, Taylor HA. Expanded Acesss For Nusinersen In Patients With Spinal Muscular Atropy: Negotiating Limited Data, Limited Alternative Treatments, And Limited Hospital Resources. American Journal of Bioethics. 2017 Oct;17(10):66-67.
Taylor HA, Morales C, Wilfond BS. A trial to test a novel approach to diabetes prevention. American Journal of Bioethics. 2017 Oct;17(10):74-75.
Rosenberg AR, Wolfe J. Approaching the third decade of paediatric palliative oncology investigation: Historical progress and future directions. Lancet Child and Adolescent Health. 2017 Sep;1(1):56-67.
Rosenberg AR, Bradford MC, Bona K, Shaffer ML, Wolfe J, Baker KS, Lau N, Yi-Frazier J. Hope, distress, and later quality of life among adolescent and young adults with cancer. Journal of Psychosocial Oncology. 2017 Sep;21:1-8.
Yi-Frazier JP, Fladeboe K, Klein V, Eaton L, Wharton C, McCauley E, Rosenberg AR. Promoting Resilience in Stress Management for Parents (PRISM-P): An Intervention for Caregivers of Youth With Serious Illness. Families, Systems & Health. 2017 Sep;35(3):341-351.
Deverka PA, Majumder MA, Villanueva AG, Anderson M, Bakker AC, Bardill J, Boerwinkle E, Bubela T, Evans BJ, Garrison NA, Gibbs RA, Gentleman R, Glazer D, Goldstein MM, Greely H, Harris C, Knoppers BM, Koenig BA, Kohane IS, La Rosa S, Mattison J, O'Donnell CJ, Rai AK, Rehm HL, Rodriguez LL, Shelton R, Simoncelli T, Terry SF, Watson MS, Wilbanks J, Cook-Deegan R, McGuire AL. Creating A Data Resource: What Will It Take To Build A Medical Information Commons? Genome Medicine. 2017 Sep;9(1):84.
Opel DJ, Schwartz JL, Omer SB, Silverman R, Duchin J, Kodish E, Diekema DS, Marcuse EK, Orenstein W. Achieving an optimal childhood vaccine policy. JAMA Pediatrics. Sept 2017;171(9):893-896.
Weise KL, Okun AL, Carter BS, Christian CW; [Opel, DJ] Committee on Bioethics; Section on Hospice and Palliative Medicine; Committee on Child Abuse and Neglect. Guidance on forgoing life-sustaining medical treatment. Pediatrics. Sept 2017;140(3):e20171905.
Carpenter D, Gonzalez D, Retsch-Bogart G, Sleath B, Wilfond B. Methodological and Ethical Issues in Pediatric Medication Safety Research. Pediatrics. Sept 2017;140(3):pii:e20170195.
Gupta AA, Chi YY, Anderson JR, Lyden E, Weigel B, Arndt C, Meyer WH, Rosenberg A, Hawkins DS. Patterns of chemotherapy-induced toxicities and outcome in children and adolescents with metastatic rhabdomyosarcoma: A report from the Children's Oncology Group. Pediatric Blood & Cancer. Sep 2017;64(9).
Cunningham RM, Minard CG, Guffey D, Swaim LS, Opel DJ, Boom JA. Prevalence of vaccine hesitancy among expectant mothers in Houston, Texas. Academic Pediatrics. 2017 Aug;S1876-2859(17):30461-30468.
Ormond KE, Mortlock DP, Scholes DT, Bombard Y, Brody LC, Faucett WA, Garrison NA, Hercher L, Isasi R, Middleton A, Musunuru K, Shriner D, Virani A, Young CE. Human Germline Genome Editing. American Journal of Human Genetics. 2017 Aug 3;101(2):167-176. Review.
Schulte F, Russell KB, Cullen P, Embry L, Fay-McClymont T, Johnston D, Rosenberg AR, Sung L. Systematic review and meta-analysis of health-related quality of life in pediatric CNS tumor survivors. Pediatric Blood & Cancer. 2017 Aug;64(8).
Wightman AG. Reflections on a question: "Would you offer dialysis?" American Journal of Kidney Diseases. Aug 2017;70(2):A9-A10.
Kraft SA, Porter KM, Korngiebel DM, James C, Constantine M, Kelley M, Capron A, Diekema D, Lee SS, Cho, MK, Magnus D, Wilfond BS. Research on medical practices: Why patients consider participating and the investigational misconception. IRB: Ethics & Human Research. July/Aug 2017;39(4):10-16.
Henrikson NB, Anderson ML, Opel DJ, Dunn J, Marcuse EK, Grossman DC. Longitudinal trends in vaccine hesitancy in a cohort of mothers surveyed in Washington state, 2013-2015. Public Health Reports. Jul/Aug 2017; 132(4):451-454.
Kauffman TL, Irving SA, Leo MC, Gilmore MJ, Himes P, McMullen CK, Morris E, Schneider J, Wilfond BS, Goddard KAB. The NextGen Study: Patient motivation for participation in genome sequencing for carrier status. Molecular Genetics & Genomic Medicine. 2017 Jul 2;5(5):508-515.
Non AL, León-Pérez G, Glass H, Kelly E, Garrison NA. Stress across generations: A qualitative study of stress, coping, and caregiving among Mexican immigrant mothers. Ethnicity & Health. Jul 2017;1-17.
Kraft SA, Porter KM, Shah SK, Wilfond BS. Comprehension and choice under the revised common rule: Improving informed consent by offering reasons why some enroll in research and others do not. American Journal of Bioethics. Jul 2017;17(7):53-55.
Wiener L, Rosenberg AR. Family-centered advanced care planning with adolescents living with HIV is perceived as important, helpful and meaningful. Evidence-Based Nursing. 2017 Jul;20(3):85.
Tate T, Goldberg A, Wightman A, Warady BA, Lantos JD. Controversy about dialysis for an adolescent. Pediatrics. Jul 2017;140(1). pii: e20170327.
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. Genetics in Medicine. 2017 Jul;19(7):803-808.
Kett JC, Wolfe E, Vernon MM, Woodrum D, Diekema D. The multidisciplinary fetal center: Clinical expertise is only part of the experience. Acta Paediatrica. 2017 Jun;106(6):930-934.
Jecker NS, Wightman AG, Rosenberg AR, Diekema DS. From protection to entitlement: selecting research subjects for early phase clinical trials involving breakthrough therapies. J Med Ethics. 2017 Jun;43(6):391-400.
Cole AM, Baldwin L-M, Keppel GA, Kuwana E, Mollis BL, Wilfond BS. Conflicts of interest and distribution of resources to community partners: An organizational ethics dilemma. Progress in Community Health Partnerships: Research, Education, and Action. 2017; 11(1):99-106.
Hofstetter AM, Robinson JD, Lepere K, Cunningham M, Etsekson N, Opel DJ. Clinician-parent discussions about influenza vaccination of children and their association with vaccine acceptance.Vaccine. 2017 May 9;35(20):2709-2715.
Feraco AM, Dussel V, Orellana L, Kang TI, Geyer JR, Rosenberg AR, Feudtner C, Wolfe J. Tumor talk and child well-being: Perceptions of "good" and "bad" news among parents of children with advanced cancer.J Pain Symptom Manage. 2017 May;53(5):833-841.
Straehla JP, Barton KS, Yi-Frazier JP, Wharton C, Baker KS, Bona K, Wolfe J, Rosenberg AR. The benefits and burdens of cancer: A prospective longitudinal cohort study of adolescents and young adults. J Palliat Med. 2017 May;20(5):494-501.
Wilfond BS, Morales C, Taylor HA. Should patients be required to undergo standard chemotherapy before being eligible for novel phase I immunotherapy clinical trials?Am J Bioeth. 2017 Apr;17(4):66-67.
Taylor HA, Morales C, Wilfond BS. Genotype-driven recruitment in population-based biomedical research. Am J Bioeth. 2017 Apr;17(4):58-59.
Bednarczyk RA, Tate T, Opel DJ, Omer SB. The church, the state, and vaccine policy. Am J Bioeth. 2017 Apr;17(4):50-52.
Wightman A. Management dilemmas in pediatric nephrology: Time-limited trials of dialysis therapy. Pediatr Nephrol. 2017 Apr;32(4):615-620.
Wightman A. Is it permissible for a child with neurodevelopmental disabilities to be a living donor transplant candidate, but not a deceased donor candidate? Should donor source influence transplant center deliberations? Pediatr Transplant. 2017 Mar;21(2).
Na HS, Brockway NL, Gentry KR, Opheim E, Sedensky MM, Morgan PG. The genetics of isoflurane-induced developmental neurotoxicity. Neurotoxicol Teratol. 2017 Mar-Apr;60:40-49.
Wightman A, Bartlett HL, Zhao Q, Smith JM. Prevalence and outcomes of heart transplantation in children with intellectual disability. Pediatric Transplantation. Mar 2017;21(2).
Khoo EJ, Schremmer RD, Diekema DS, Lantos JD. Ethical concerns when minors act as standardized patients. Pediatrics. 2017 Mar;139(3). pii: e20162795.
Tate T. The Clue. Hastings Cent Rep. 2017 Mar;47(2):3-4.
Kraft SA, Constantine M, Magnus D, Porter KM, Lee SS, Green M, Kass NE, Wilfond BS, Cho MK. A randomized study of multimedia informational aids for research on medical practices: Implications for informed consent. Clinical Trials. 2017;14(1):94-102.
Opel DJ. A push for progress with shared decision-making in pediatrics. Pediatrics. 2017 Feb;139(2): pii:e20162526.
Stricker PA, Goobie SM, Cladis FP, Haberkern CM, Meier PM, Reddy SK, Nguyen TT, Cai L, Polansky M, Szmuk P, Fiadjoe J, Soneru C, Falcon R, Petersen T, Kowalczyk-Derderian C, Dalesio N, Budac S, Groenewald N, Rubens D, Thompson D, Watts R, Gentry K, Ivanova I, Hetmaniuk M, Hsieh V, Collins M, Wong K, Binstock W, Reid R, Poteet-Schwartz K, Gries H, Hall R, Koh J, Bannister C, Sung W, Jain R, Fernandez A, Tuite GF, Ruas E, Drozhinin O, Tetreault L, Muldowney B, Ricketts K, Fernandez P, Sohn L, Hajduk J, Taicher B, Burkhart J, Wright A, Kugler J, Barajas-DeLoa L, Gangadharan M, Busso V, Stallworth K, Staudt S, Labovsky KL, Glover CD, Huang H, Karlberg-Hippard H, Capehart S, Streckfus C, Nguyen KT, Manyang P, Martinez JL, Hansen JK, Levy HM, Brzenski A, Chiao F, Ingelmo P, Mujallid R, Olutoye OA, Syed T, Benzon H, Bosenberg A; Pediatric Craniofacial Collaborative Group. Perioperative outcomes and management in pediatric complex cranial vault reconstruction: A multicenter study from the Pediatric Craniofacial Collaborative Group. Anesthesiology. 2017 Feb;126(2):276-287.
Shah SK. When to start paediatric testing of the adult HIV cure research agenda? Journal of Medical Ethics. 2017 Feb;43(2):82-86.
Rid A, Shah SK. Substantiating the social value requirement for research: An introduction. Bioethics. 2017 Feb;31(2):72-76.
Nayak R, Shah SK. Should social value obligations be local or global? Bioethics. 2017 Feb;31(2):116-127.
Kauffman TL, Wilfond BS, Jarvik GP, Leo MC, Lynch FL, Reiss JA, Richards CS, McMullen C, Nickerson D, Dorschner MO, Goddard KA. Design of a randomized controlled trial for genomic carrier screening in healthy patients seeking preconception genetic testing. Contemporary Clinical Trials. 2017 Feb; 53: 100-105.
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. Genetics in Medicine. 2017 Feb;19(2): 176-181.
Porter KM, Cho MK, Kraft SA, Korngiebel DM, Constantine M, Lee SS, Kelley M, James C, Kuwana E, Meyer A, Diekema D, Capron AM, Magnus D, Wilfond BS. Research on medical practices (ROMP): Attitudes of IRB personnel about randomization and informed consent. IRB: Ethics & Human Research. 2017 Jan-Feb;39(1):10-16.
Kraft SA. Modern pregnancies and (im)perfect babies. American Journal of Bioethics. 2017 Jan; 17(1): 1-2.
Davidson JE, Aslakson RA, Long AC, Puntillo KA, Kross EK, Hart J, Cox CE, Wunsch H, Wickline MA, Nunnally ME, Netzer G, Kentish-Barnes N, Sprung CL, Hartog CS, Coombs M, Gerritsen RT, Hopkins RO, Franck LS, Skrobik Y, Kon AA, Scruth EA, Harvey MA, Lewis-Newby M, White DB, Swoboda SM, Cooke CR, Levy MM, Azoulay E, Curtis JR. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Critical Care Medicine. 2017 Jan; 45(1): 103-128.
Opel D…Section on Surgery; Committee on Bioethics; American Pediatric Surgical Association New Technology Committee. Responsible innovation in children's surgical care. Pediatrics. 2017 Jan; 139(1): e20163437.
Rosenberg AR, Bona K, Ketterl T, Wharton CM, Wolfe J, Baker KS. Intimacy, substance use, and communication needs during cancer therapy: A report from the “Resilience in Adolescents and Young Adults” study. Journal of Adolescent Health. 2017 Jan; 60(1): 93-99.
Rosenberg AR. “Get the consent” – Nonfinancial conflict of interest in academic clinical research. Journal of Clinical Oncology. 2017 Jan; 35(1): 11-13.
Wilfond BS. Breaking the sounds of silence: Respecting people with disabilities and reproductive decision making. American Journal of Bioethics. 2017 Jan; 17(1): 37-39.
Parasidis E, Opel DJ. Parental refusal of childhood vaccines and medical neglect laws. American Journal of Public Health. 2017 Jan; 107(1): 68-71.
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2016
Katz AL, Webb SA, … Diekema, D, … Committee on Bioethics, American Academy of Pediatrics. Technical report: Informed consent in decision-making in pediatric practice. Pediatrics 2016; 138(2): e20161485.
Rivin BE, Diekema DS, Mastroianni AC, Krieger JN, Klausner JD, Morris BJ. Critical evaluation of Adler’s challenge to the CDC’s male circumcision recommendations. International Journal of Children’s Rights 2016; 24(2): 265-303.
Wightman A. Is it permissible for a child with neurodevelopmental disabilities to be a living donor transplant candidate, but not a deceased donor candidate? Should donor source influence transplant center deliberations? Pediatric Transplantation. 2016 Dec; 00: 1-3.
Rosenberg AR, Wolfe J, Wiener L, Lyon M, Feudtner C. Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: A review. JAMA Pediatrics. 2016 Dec 1; 170(12): 1216-1223.
Weiss EM, Barg FK, Cook N, Black E, Joffe S. Parental decision-making preferences in neonatal intensive care. Journal of Pediatrics. 2016 Dec; 179: 36-41.e3.
Smith ME, Sanderson SC, Brothers KB, Myers MF, McCormick J, Aufox S, Shrubsole MJ, Garrison NA, Mercaldo ND, Schildcrout JS, Clayton EW, Antommaria AH, Basford M, Brilliant M, Connolly JJ, Fullerton SM, Horowitz CR, Jarvik GP, Kaufman D, Kitchner T, Li R, Ludman EJ, McCarty C, McManus V, Stallings S, Williams JL, Holm IA. Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions. BMC Medical Research Methodology. 2016 Nov 24; 16(1): 162.
Wightman A, Bartlett HL, Zhao Q, Smith JM. Prevalence and outcomes of heart transplantation in children with intellectual disability. Pediatric Transplantation. 2016 Nov; 18(7): 714-719.
Rosenberg AR. "Teacher". Journal of Palliative Medicine. 2016 Nov; 19(11): 1231.
Weiss EM, Kohn R, Madden V, Halpern S, Joffe S, Kerlin MP. Procedure-specific consent is the norm in United States intensive care units. Intensive Care Medicine. 2016 Oct; 42(10): 1637-1638.
Wilfond BS, Morales C, Taylor HA. Studying the role of financial incentives to promote hepatitis B vaccination in a community clinic. American Journal of Bioethics. 2016 Oct; 16(10): 75-76.
Taylor HA, Morales C, Wilfond BS. When a clinical trial is the only option. American Journal of Bioethics. 2016 Oct; 16(10): 67-68.
Kraft SA, Cho MK, Constantine M, Lee SS, Kelley M, Korngiebel D, James C, Kuwana E, Meyer A, Porter K, Diekema D, Capron AM, Alicic R, Wilfond BS, Magnus D. A comparison of institutional review board professionals' and patients' views on consent for research on medical practices. Clinical Trials. 2016 Oct; 13(5): 555-65.
Tate TP, Pearlman RA. Military metaphors in health care: Who are we actually trying to help? American Journal of Bioethics. 2016 Oct; 16(10): 15-7.
Stark D, Rosenberg AR, Johnston D, Knight K, Caperon L, Uleryk E, Frazier AL, Sung L. Patient-reported measures of hearing loss and tinnitus in pediatric cancer and hematopoietic stem cell transplantation: A systematic review. Journal of Speech, Language, and Hearing Research. 2016 Oct 1; 59(5): 1247-1252.
Van Dorp W, Mulder RL, Kremer LC, Hudson MM, van den Heuvel-Eibrink MM, van den Berg MH, Levine JM, van Dulmen-den Broeder E, di Iorgi N, Albanese A, Armenian SH, Bhatia S, Constine LS, Corrias A, Deans R, Dirksen U, Gracia CR, Hjorth L, Kroon L, Lambalk CB, Landier W, Levitt G, Leiper A, Meacham L, Mussa A, Neggers SJ, Oeffinger KC, Revelli A, van Santen HM, Skinner R, Toogood A, Wallace WH, Haupt R. Recommendations for premature ovarian insufficiency surveillance for female survivors of childhood, adolescent, and young adult cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCareSurFup Consortium. Journal of Clinical Oncology. 2016 Oct 1; 34(28): 3440-3450. Review.
Mathews DJH, Hester DM, Kahn J, McGuire A, McKinney R, Meador K, Philpott-Jones S, Youngner S, Wilfond BS. A conceptual model for the translation of bioethics research and scholarship. Hastings Center Report. 2016; 46: 34-39.
Rosenberg AR, Feudtner C. What else are you hoping for? Fostering hope in paediatric serious illness. Acta Paediatrica. 2016 Sep; 105(9): 1004-1005.
Johnston DL, Sung L, Stark D, Frazier AL, Rosenberg AR. A systematic review of patient-reported outcome measures of neuropathy in children, adolescents and young adults. Supportive Care in Cancer. 2016 Sep; 24(9): 3723-3728.
Wightman AG, Freeman MA. Update on ethical issues in pediatric dialysis: Has pediatric dialysis become morally obligatory?Clinical Journal of the American Society of Nephrology. 2016 Aug 8; 11(8): 1456-1462.
Rosenberg AR. A piece of my mind. Nondisclosure. JAMA. 2016 Aug 23-30; 316(8) :821.
Rosenberg AR and Bona K. The power of personal narrative: A reply to “The reality of relapse: Impact of cancer relapse on survivorship interventions and patient reported outcomes data.” Pediatric Blood and Cancer. 2016;63(8):1494.
Rosenberg AR, Orellana L, Ullrich C, Kang T, Geyer JR, Feudtner C, Dussel V, Wolfe J. Quality of life in children with advanced cancer: A report from the PediQUEST study. Journal of Pain and Symptom Management. 2016 Aug; 52(2): 243-253.
Opel, D...and the Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics. 2016 Aug; 138(2): pii: e20161484.
Opel, D…Katz AL, Webb SA, and the Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics. 2016 Aug; 138(2): pii: e20161485.
Michie M, Kraft SA, Minear MA, Ryan RR, Allyse MA. Informed decision-making about prenatal cfDNA screening: An assessment of written materials. Ethics, Medicine, and Public Health. 2016 Jul-Sep; 2(3): 362-371.
Brazg T, Lindhorst T, Dudzinski D, Wilfond B. Defining patient advocacy for the context of clinical ethics consultation: A review of the literature and recommendations for consultants. Journal of Clinical Ethics. 2016 Summer; 27(2): 176-84.
Starks H, Doorenbos A, Lindhorst T, Bourget E, Aisenberg E, Oman N, Rue T, Curtis JR, Hays R. The Family Communication Study: A randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden. Contemporary Clinical Trials. 2016 Jul; 49: 15-20.
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. American Journal of Human Genetics. 2016 Jul 7; 99(1): 1051-1066.
Gentry KR, Diekema D. Allocation of anesthesia care should be addressed proactively. American Journal of Bioethics. 2016 Jul; 16(7): 70-2.
Force LM, Rosenberg AR. A call for psychosocial and palliative care training standards for pediatric hematology-oncology physicians, A reply to: Communication, documentation, and training standards in pediatric psychosocial oncology. Pediatric Blood & Cancer. 2016 Jul; 63(7): 1314.
Rosenberg AR and Yi-Frazier J. Commentary: Resilience defined: An alternative perspective. Journal of Pediatric Psychology. 2016 Jun; 41(5): 506-9.
Wightman A, Hsu E, Zhao Q, Smith J. Prevalence and outcomes of liver transplantation in children with intellectual disability. Journal of Pediatric Gastroenterology and Nutrition. 2016 Jun; 62(6): 808-12.
Williams SE, Morgan A, Opel D, Edwards K, Weinberg S, Rothman R. Screening tool predicts future underimmunization among a pediatric practice in Tennessee. Clinical Pediatrics (Philadelphia). 2016 Jun; 55(6): 537-542.
Shah SK, Wilfond BS. HIV remission in neonates: Ethical and human rights considerations. Perspectives in Biology and Medicine. Summer 2016; 58(3): 341-3.
Shah SK, Wilfond BS. The role of community engagement in novel HIV research in infants. Perspectives in Biology and Medicine. Summer 2016; 58(3): 344-7.
Lee SS, Kelley M, Cho MK, Kraft SA, James C, Constantine M, Meyer AN, Diekema D, Capron AM, Wilfond BS, Magnus D. Adrift in the gray zone: IRB perspectives on research in the learning health system. AJOB Empirical Bioethics. 2016; 7(2): 125-134.
Kelley MC, Brazg T, Wilfond BS, Lengua LJ, Rivin BE, Martin-Herz SP, Diekema DS. Ethical challenges in research with orphans and vulnerable children: a qualitative study of researcher experiences. International Health. 2016 May; 8(3): 187-96.
Wolf E, Rowhani-Rahbar A, Duchin J, DeHart MP, Opel D. The challenges in measuring local immunization coverage: a statewide case study. Pediatrics. 2016 May; 137(5). pii: e20153755.
Diekema DS, Wilfond BS. Decision-making for children with disabilities: Parental discretion and moral ambiguity. Perspectives in Biology and Medicine. 2016 May; 58(3): 328-31.
Hoopes AJ, Sucato GS, Diekema DS. Involving parents in pediatric patients' decisions about long-acting reversible contraception. JAMA Pediatrics. 2016 May 1; 170(5): 409-10.
Rosenberg AR, Bona K, Wharton CM, Bradford M, Shaffer ML, Wolfe J, Baker KS. Adolescent and young adult patient engagement and participation in survey-based research: A report from the "resilience in adolescents and young adults with cancer" study. Pediatric Blood & Cancer. 2016 Apr; 63(4): 734-6.
Wightman AG, Freeman MA. Update on ethical issues in pediatric dialysis: Has pediatric dialysis become morally obligatory?Clinical Journal of the American Society of Nephrology. 2016 Apr 1; 11(8): 1456-1462.
Opel DJ, Kronman MP, Diekema DS, Marcuse EK, Duchin JS, Kodish E. Childhood vaccine exemption policy: The case for a less restrictive alternative. Pediatrics. 2016 Apr; 137(4). pii: e20154230.
Sconyers J, Tate T. How should clinicians treat patients who might be undocumented? AMA Journal of Ethics. 2016 Mar 1; 18(3): 229-36.
Korngiebel DM, McMullen CK, Amendola LM, Berg JS, Davis JV, Gilmore MJ, Harding CO, Himes P, Jarvik GP, Kauffman TL, Kennedy KA, Simpson DK, Leo MC, Lynch FL, Quigley DI, Reiss JA, Richards CS, Rope AF, Schneider JL, Goddard KA, Wilfond BS. Generating a taxonomy for genetic conditions relevant to reproductive planning. American Journal of Medical Genetics Part A. 2016 Mar; 170(3): 565-73.
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. American Journal of Medical Genetics Part A. 2016 Mar; 170(3): 574-82.
Kelley M, James C, Alessi Kraft S, Korngiebel D, Wijangco I, Joffe S, Cho MK, Wilfond B, Lee SS. The role of patient perspectives in clinical research ethics and policy: Response to open peer commentaries on "patient perspectives on the learning health system". American Journal of Bioethics. 2016 Feb; 16(2): W7-9.
Grady C, Nogues I, Wiener L, Wilfond BS, Wendler D. Adolescent research participants' descriptions of medical research. AJOB Empirical Bioethics. 2016 Jan 1; 7(1): 1-7.
Peay HL, Scharff H, Tibben A, Wilfond B, Bowie J, Johnson J, Nagaraju K, Escolar D, Piacentino J, Biesecker BB. "Watching time tick by…": Decision making for Duchenne muscular dystrophy trials. Contemporary Clinical Trials. 2016 Jan; 46: 1-6.
Brothers KB, Holm IA, Childerhose JE, Antommaria AH, Bernhardt BA, Clayton EW, Gelb BD, Joffe S, Lynch JA, McCormick JB, McCullough LB, Parsons DW, Sundaresan AS, Wolf WA, Yu JH, Wilfond BS; Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium; Pediatrics Workgroup of the Clinical Sequencing Exploratory Research CSER Consortium. When participants in genomic research grow up: contact and consent at the age of majority. The Journal of Pediatrics. 2016 Jan; 168: 226-231.e1.
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2015
Chong JX, Yu JH, Lorentzen P, Park KM, Jamal SM, Tabor HK, Rauch A, Saenz MS, Boltshauser E, Patterson KE, Nickerson DA, Bamshad MJ. Gene discovery for Mendelian conditions via social networking: de novo variants in KDM1A cause developmental delay and distinctive facial features. Genet Med. 2015 Dec 10.
Lown EA, Phillips F, Schwartz LA, Rosenberg AR, Jones B. Psychosocial follow-up in survivorship as a standard of care in pediatric oncology. Pediatric Blood & Cancer. 2015 Dec; 62 Suppl 5: S531-601.
Tabor H. "Women Who Don't Give A Crap". PLoS Genetics. 2015 Dec 23; 11(12): e1005736. eCollection 2015 Dec.
Rosenberg AR, Syrjala KL, Martin PJ, Flowers ME, Carpenter PA, Salit RB, Baker KS, Lee SJ. Resilience, health, and quality of life among long-term survivors of hematopoietic cell transplantation. Cancer. 2015 Dec 1; 121(23): 4250-7.
Kraft SA, Porter K, Wilfond BS. Research on medical practices and the patient-physician relationship: What can regulators learn from patients? AMA Journal of Ethics. 2015 Dec 1; 17(12): 1160-5.
Magnus D, Wilfond B. Commentary on Kim Miller. Clin Trials. 2015 Dec; 12(6): 564-6.
Garrison NA, Sathe NA, Antommaria AH, Holm IA, Sanderson SC, Smith ME, McPheeters ML, Clayton EW. A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States. Genet Med. 2015 Nov 19.
Mancini ME, Diekema DS, Hoadley TA, Kadlec KD, Leveille MH, McGowan JE, Munkwitz MM, Panchal AR, Sayre MR, Sinz EH. Part 3: Ethical issues: 2015 American Heart Association Guidelines Update for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care. Circulation. 2015 Nov 3; 132(18 Suppl 2): S383-96.
Cho MK, Magnus D, Wilfond BS. Informed consent for research on medical practices. Ann Intern Med. 2015 Nov 3; 163(9): 725-6.
Opel DJ, Mangione-Smith R, Robinson JD, Heritage J, DeVere V, Salas HS, Zhou C, Taylor JA. The influence of provider communication behaviors on parental vaccine acceptance and visit experience. Am J Public Health. 2015 Oct; 105(10): 1998-2004.
Taylor HA, Kuwana E, Wilfond BS. Is it ethical to enroll cognitively impaired adults in research that is more than minimal risk with no prospect of benefit? American Journal of Bioethics. 2015 Oct; 15(10): 64-5.
Taylor HA, Kuwana E, Wilfond BS. Recontact and recruitment of young adults previously enrolled in neonatal herpes simplex virus research. American Journal of Bioethics. 2015 Oct; 15(10): 56-7.
Melvin AJ, Mohan KM, Wald A, Porter K, Wilfond BS. Research recruitment of adult survivors of neonatal infections: Is there a role for parental consent? American Journal of Bioethics. 2015 Oct; 15(10): 58-59.
Brown A, Clark JD. A parent's journey: Incorporating principles of palliative care into practice for children with chronic neurologic diseases. Semin Pediatr Neurol. 2015 Sep; 22(3): 159-65.
Diekema DS. Physician dismissal of families who refuse vaccination: An ethical assessment. J Law Med Ethics. 2015 Sep; 43(3): 654-60.
Wilfond BS, Fernandez CV, Green RC. Disclosing secondary findings from pediatric sequencing to families: Considering the "benefit to families". J Law Med Ethics. 2015 Sep; 43(3): 552-8.
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. Returning a research participant's genomic results to relatives: Analysis and recommendations. J Law Med Ethics. 2015 Sep; 43(3): 440-63.
Wightman A, Diekema D. Should an undocumented immigrant receive a heart transplant? AMA J Ethics. 2015 Oct; 17(10): 909-913.
Weaver MS, Diekema DS, Carr A, Triplett B. Matched marrow, sibling shadow: The epidemiology, experience, and ethics of sibling donors of stem cells. Journal of Adolescent and Young Adult Oncology. 2015 Sep; 4(3): 100-104.
Kett JC. Prenatal consultation for extremely preterm neonates: Ethical pitfalls and proposed \solutions. J Clin Ethics. 2015 Fall;26(3):241-249.
Kelley M, James C, Alessi Kraft S, Korngiebel D, Wijangco I, Rosenthal E, Joffe S, Cho MK, Wilfond B, Lee SS. Patient perspectives on the learning health system: The importance of trust and shared decision making. Am J Bioeth. 2015 Sep;15(9):4-17.
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. Broad consent for research with biological samples: Workshop conclusions. Am J Bioeth. 2015 Sep;15(9):34-42.
McCullough LB, Brothers KB, Chung WK, Joffe S, Koenig BA, Wilfond B, Yu JH; Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group. Professionally responsible disclosure of genomic sequencing results in pediatric practice. Pediatrics. 2015 Sep 14. pii: peds.2015-0624.
Welch MJ, Lally R, Miller JE, Pittman S, Brodsky L, Caplan AL, Uhlenbrauck G, Louzao DM, Fischer JH, Wilfond B. The ethics and regulatory landscape of including vulnerable populations in pragmatic clinical trials. Clin Trials. 2015 Sep 15. pii: 1740774515597701.
Jecker NS, Dudzinski DM, Diekema DS, Tonelli M. Ebola virus disease: Ethics and emergency medical response policy. Chest. 2015 Sep 1;148(3):794-800.
Chong JX, Buckingham KJ, Jhangiani SN, Boehm C, Sobreira N, Smith JD, Harrell TM, McMillin MJ, Wiszniewski W, Gambin T, Coban Akdemir ZH, Doheny K, Scott AF, Avramopoulos D, Chakravarti A, Hoover-Fong J, Mathews D, Witmer PD, Ling H, Hetrick K, Watkins L, Patterson KE, Reinier F, Blue E, Muzny D, Kircher M, Bilguvar K, López-Giráldez F, Sutton VR, Tabor HK, Leal SM, Gunel M, Mane S, Gibbs RA, Boerwinkle E, Hamosh A, Shendure J, Lupski JR, Lifton RP, Valle D, Nickerson DA; Centers for Mendelian Genomics, Bamshad MJ. The genetic basis of Mendelian phenotypes: Discoveries, challenges, and opportunities. Am J Hum Genet. 2015 Aug 6;97(2):199-215.
Wolf ER, Rowhani-Rahbar A, Opel DJ. The impact of epidemics of vaccine-preventable disease on vaccine uptake: lessons from the 2011-2012 US pertussis epidemic. Expert Rev Vaccines. 2015 Jul;14(7):923-33.
Henrikson NB, Opel DJ, Grothaus L, Nelson J, Scrol A, Dunn J, Faubion T, Roberts M, Marcuse EK, Grossman DC. Physician communication training and parental vaccine hesitancy: A randomized trial. Pediatrics. 2015 Jul;136(1):70-9.
Wilfond BS, Goddard KA.It's complicated: criteria for policy decisions for the clinical integration of genome-scale sequencing for reproductive decision making. Mol Genet Genomic Med. 2015 Jul;3(4):239-42.
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. Review.
Emond MJ, Louie T, Emerson J, Chong JX, Mathias RA, Knowles MR, Rieder MJ, Tabor HK, Nickerson DA, Barnes KC; NHLBI GO Exome Sequencing Project, Go L, Gibson RL, Bamshad MJ. Exome sequencing of phenotypic extremes identifies CAV2 and TMC6 as interacting modifiers of chronic Pseudomonas aeruginosa infection in cystic fibrosis. PLoS Genet. 2015 Jun 5;11(6):e1005273. eCollection 2015 Jun. and Correction: Exome sequencing of phenotypic extremes identifies CAV2 and TMC6 as interacting modifiers of chronic Pseudomonas aeruginosa infection in cystic fibrosis. PLoS Genet. 2015 Aug 18;11(8):e1005424. eCollection 2015 Aug.
Brazg T, Dotolo D, Blacksher E. Finding a seat at the table together: Recommendations for improving collaboration between social work and bioethics. Bioethics. 2015 Jun;29(5):362-8.
Kelen GD, Sauer L, Clattenburg E, Lewis-Newby M, Fackler J. Pediatric disposition classification (reverse triage) system to create surge capacity. Disaster Med Public Health Prep. 2015 Jun;9(3):283-90.
Schneider JL, Goddard KA, Davis J, Wilfond B, Kauffman TL, Reiss JA, Gilmore M, Himes P, Lynch FL, Leo MC, McMullen C. "Is it worth knowing?" Focus group participants' perceived utility of genomic preconception carrier screening. J Genet Couns. 2015 Jun 21.
Wolfe J, Orellana L, Ullrich C, Cook EF, Kang TI, Rosenberg A, Geyer R, Feudtner C, Dussel V. Symptoms and distress in children with advanced cancer: Prospective patient-reported outcomes from the PediQUEST Study. J Clin Oncol. 2015 Jun 10;33(17):1928-35.
Boss RD, Henderson CM, Wilfond BS. Decisions regarding resuscitation of extremely premature infants: Should social context matter? JAMA Pediatr. 2015 Jun 1;169(6):521-2.
Wilfond BS, Magnus DC. The potential harms and benefits from research on medical practices. Hastings Cent Rep. 2015 May-Jun;45(3):5-6.
Cho MK, Magnus D, Constantine M, Soo-Jin Lee S, Kelley M, Alessi S, Korngiebel D, James C, Kuwana E, Gallagher T, Diekema D, Capron AM, Joffe S, Wilfond BS. Attitudes toward risk and informed consent for research on medical practices: A Cross-sectional survey. Ann Intern Med. 2015 May 19; 162(10): 690-6.
Strelitz B, Gritton J, Klein EJ, Bradford MC, Follmer K, Zerr DM, Englund JA, Opel DJ. Parental vaccine hesitancy and acceptance of seasonal influenza vaccine in the pediatric emergency department. Vaccine. 2015 Apr 8;33(15):1802-7.
Rosenberg A. Poison. Journal of Clinical Oncology. 2015 Apr 6.
Opel DJ, Omer SB. Measles, mandates, and making vaccination the default option. JAMA Pediatr. 2015 Apr; 169(4): 303-4.
Kunz S, McAdams RM, Diekema DS, Opel DJ. A quality of life quandary: A framework for navigating parental refusal of treatment for co-morbidities in infants with underlying medical conditions. Journal of Clinical Ethics. 2015 Spring; 26(1):16-23.
Roberts JR, Thompson D, Rogacki B, Hale JJ, Jacobson RM, Opel DJ, Darden PM. Vaccine hesitancy among parents of adolescents and its association with vaccine uptake. Vaccine. 2015 Mar 30; 33(14): 1748-1755.
Stokke J, Sung L, Gupta A, Lindberg A, Rosenberg AR. Systematic review and meta-analysis of objective and subjective quality of life among pediatric, adolescent, and young adult bone tumor survivors. Pediatric Blood & Cancer. 2015 Mar 27.
Cho MK, Taylor H, McCormick JB, Anderson N, Barnard D, Boyle MB, Capron AM, Dorfman E, Havard K, Reider C, Sadler J, Schwartz P, Sharp RR, Danis M, Wilfond BS. Building a central repository for research ethics consultation data: A proposal for a standard data collection tool. Clinical and Translational Science. 2015 Mar 10.
Magnus D, Wilfond BS. Research on medical practices and the ethics of disclosure. Pediatrics. 2015; 135(2): 208-10.
Rosenberg AR, Yi-Frazier JP, Eaton L, Wharton C, Cochrane K, Pihoker C, Baker KS, McCauley E. Promoting resilience in stress management: A pilot study of a novel resilience-promoting intervention for adolescents and young adults with serious illness. Journal of Pediatric Psychology. 2015 Feb 11.
[Hays, R] Nelson JE, Mathews KS, Weissman DE, Brasel KJ, Campbell M, Curtis JR, Frontera JA, Gabriel M, Hays RM, Mosenthal AC, Mulkerin C, Puntillo KA, Ray DE, Weiss SP, Bassett R, Boss RD, Lustbader DR. Integration of palliative care in the context of rapid response: a report from the Improving Palliative Care in the ICU advisory board. Chest. 2015 Feb; 147(2): 560-9. Review.
An official American Thoracic Society policy statement: managing conscientious objections in intensive care medicine. Lewis-Newby M, Wicclair M, Pope T, Rushton C, Curlin F, Diekema D, Durrer D, Ehlenbach W, Gibson-Scipio W, Glavan B, Langer RL, Manthous C, Rose C, Scardella A, Shanawani H, Siegel MD, Halpern SD, Truog RD, White DB; ATS Ethics and Conflict of Interest Committee. An Official American Thoracic Society Policy Statement: Managing Conscientious Objections in Intensive Care Medicine. American Journal of Respiratory and Critical Care Medicine, 2015 Jan 15; 191(2): 219-227.
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2014
Johnson EM, Diekema DS, Lewis-Newby M, King MA. Pediatric triage and allocation of critical care resources during disaster: Northwest provider opinion. Prehosp Disaster Med. 2014 Sep 23:1-6.
Delgado F, Tabor HK, Chow PM, Conta JH, Feldman KW, Tsuchiya KD, Beck AE. Single-nucleotide polymorphism arrays and unexpected consanguinity: considerations for clinicians when returning results to families. Genet Med. 2014 Sep 18.
Clark JD. Who decides who should benefit? Allocating critical care in the context of "futile treatment". Crit Care Med. 2014 Sep; 42(9): 2127-8.
Yu JH, Crouch J, Jamal SM, Bamshad MJ, Tabor HK. Attitudes of non-African American focus group participants toward return of results from exome and whole genome sequencing. Am J Med Genet A. 2014 Sep;164(9):2153-60.
Wolf ER, Opel D, DeHart MP, Warren J, Rowhani-Rahbar A. Impact of a pertussis epidemic on infant vaccination in Washington state. Pediatrics. Epub 2014 Aug 18.
Tabor HK, Auer PL, Jamal SM, Chong JX, Yu JH, Gordon AS, Graubert TA, O'Donnell CJ, Rich SS, Nickerson DA; NHLBI Exome Sequencing Project, Bamshad MJ. Pathogenic variants for Mendelian and complex traits in exomes of 6,517 European and African Americans: implications for the return of incidental results. Am J Hum Genet. 2014 Aug 7;95(2):183-93.
Rosenberg AR, Dussel V, Orellana L, Kang T, Geyer JR, Feudtner C, Wolfe J. What's missing in missing data? Omissions in survey responses among parents of children with advanced cancer. J Palliat Med. 2014 Aug 1.
Boss R, Nelson J, Weissman D, Campbell M, Curtis R, Frontera J, Gabriel M, Lustbader D, Mosenthal A, Mulkerin C, Puntillo K, Ray D, Bassett R, Brasel K, Hays R. Integrating palliative care into the PICU: A report from the Improving Palliative Care in the ICU Advisory Board. Pediatr Crit Care Med. 2014 Jul 30.
Rosenberg AR, Orellana L, Kang TI, Geyer JR, Feudtner C, Dussel V, Wolfe J. Differences in parent-provider concordance regarding prognosis and goals of care among children with advanced cancer. J Clin Oncol. 2014 Jul 14.
Crouch J, Yu JH, Shankar AG, Tabor HK. "We don't know her history, her background": Adoptive parents' perspectives on whole genome sequencing results. J Genet Couns. 2014 Jul 12.
Yu JH, Harrell TM, Jamal SM, Tabor HK, Bamshad MJ. Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing. Am J Hum Genet. 2014 Jul 3;95(1):77-84.
Burns JP, Sellers DE, Meyer EC, Lewis-Newby M, Truog RD. Epidemiology of death in the PICU at five U.S. teaching hospitals. Crit Care Med. 2014 Jun 27.
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. Phenylketonuria Scientific Review Conference: State of the science and future research needs. Mol Genet Metab. June 2014: 112(2)87-122.
Rosenberg AR, Postier A, Osenga K, Kreicbergs U, Neville B, Dussel V, Wolfe J. Long-term psychosocial outcomes among bereaved siblings of children with cancer. J Pain Symptom Manage. 2014 May 30.
Opel DJ, Bahta L. How you start the conversation matters. Minn Med. 2014 May;97(5):50-1.
JC Kett, DE Woodrum and DS Diekema. A survey of fetal care centers in the United States. J Neonatal Perinatal Med. 2014 May 13.
McMillin MJ, Beck AE, Chong JX, Shively KM, Buckingham KJ, Gildersleeve HI, Aracena MI, Aylsworth AS, Bitoun P, Carey JC, Clericuzio CL, Crow YJ, Curry CJ, Devriendt K, Everman DB, Fryer A, Gibson K, Giovannucci Uzielli ML, Graham JM Jr, Hall JG, Hecht JT, Heidenreich RA, Hurst JA, Irani S, Krapels IP, Leroy JG, Mowat D, Plant GT, Robertson SP, Schorry EK, Scott RH, Seaver LH, Sherr E, Splitt M, Stewart H, Stumpel C, Temel SG, Weaver DD, Whiteford M, Williams MS, Tabor HK,Smith JD, Shendure J, Nickerson DA; University of Washington Center for Mendelian Genomics, Bamshad MJ. Mutations in PIEZO2 cause Gordon syndrome, Marden-Walker syndrome, and distal arthrogryposis type 5. Am J Hum Genet. 2014 May 1;94(5):734-44.
Wightman A, Largent E, Del Beccaro M, Lantos JD. Who should get the last PICU bed? Pediatrics. 2014 Apr 28.
Rosenberg AR, Starks H, Jones B. “I know it when I see it.” The complexities of measuring resilience among parents of children with cancer. Support Care Cancer. 2014 Apr 23.
Gordon AS, Tabor HK, Johnson AD, Snively BM, Assimes TL, Auer PL, Ioannidis JP, Peters U, Robinson JG, Sucheston LE, Wang D, Sotoodehnia N, Rotter JI, Psaty BM, Jackson RD, Herrington DM, O'Donnell CJ, Reiner AP, Rich SS, Rieder MJ, Bamshad MJ, Nickerson DA; NHLBI GO Exome Sequencing Project. Quantifying rare, deleterious variation in 12 human cytochrome P450 drug-metabolism genes in a large-scale exome dataset. Hum Mol Genet. 2014 Apr 15;23(8):1957-63.
Kett JC. Extracorporeal membrane oxygenation and an angel. JAMA Pediatr. 2014;168(4):305.
Taylor HA, Kuwana E, Wilfond BS. Ethics of continuing to provide a drug on an open-label extension study for an "unapproved indication". Am J Bioeth. 2014 Apr;14(4):56.
Taylor HA, Kuwana E, Wilfond BS. The ethics of disclosing to research subjects the availability of off-label marketed drugs. Am J Bioeth. 2014 Apr;14(4):51.
Diekema, DS. Personal belief exemptions to school vaccination mandates. Annual Reviews in Public Health. 2014; 35(3): 275-92.
Grady C, Wiener L, Abdoler E, Trauernicht E, Zadeh S, Diekema DS, Wilfond BS, Wendler D. Assent in research: the voices of adolescents. J Adolescent Medicine. Epub 2014 Mar 14.
Magnus D, Wilfond B, Caplan A. Accepting brain death. N Engl J Med 2014; 370:891-94.
Rosenberg AR, Anderson JR, Lyden E, Rodeberg DA, Wolden SL, Kao SC, Parham DM, Arndt C, Hawkins DS. Early response as assessed by anatomic imaging does not predict failure-free survival among patients with Group III rhabdomyosarcoma: a report from the Children's Oncology Group. Eur J Cancer. 2014 Mar;50(4):816-23.
Opel DJ, Feemster KA, Omer SB, Orenstein WA, Richter M, Lantos JD. A 6-month-old with vaccine-hesitant parents. Pediatrics. 2014 Mar;133(3):526-30.
Molina Y, Yi JC, Martinez-Gutierrez J, Reding KW, Yi-Frazier JP, Rosenberg AR. Resilience among patients across the cancer continuum: diverse perspectives. Clin J Oncol Nurs. 2014 Feb;18(1):93-101.
Wilfond B. Tracheostomies and assisted ventilation in children with profound disabilities: Navigating family and professional values. Pediatrics 2014;133;S44-49.
Botkin JR, Lewis MH, Watson MS, Swoboda KJ, Anderson R, Berry SA, Bonhomme N, Brosco JP, Comeau AM, Goldenberg A, Goldman E, Therrell B, Levy-Fisch J, Tarini B, Wilfond B; Bioethics and Legal Work Group of the Newborn Screening Translational Research Network. Parental permission for pilot newborn screening research: guidelines from the NBSTRN. Pediatrics. 201;133(2):e410-17.
Brown AN, Gonzalez GR, Wiester RT, Kelley MC, Feldman KW. Care taker blogs in caregiver fabricated illness in a child: A window on the caretaker's thinking? Child Abuse Negl. 2014 Jan 3. pii: S0145-2134(13)00387-6
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2013
Tate RC, Kelley MC. Triage in the Tower of Babel: interpreter services for children in the prehospital setting. Pediatr Emerg Care. 2013 Dec;29(12):1280-2.
Feltman D, Stokes T, Kett J, Lantos J. Is Treatment Futile for an Extremely Premature Infant with Giant Omphalocele?Pediatrics. Epub 2013 Dec 23.
Rosenberg AR, Anderson JR, Lyden E, Rodeberg DA, Wolden SL, Kao SC, Parham DM, Arndt C, Hawkins DS. Early response as assessed by anatomic imaging does not predict failure-free survival among patients with Group III rhabdomyosarcoma: A report from the Children's Oncology Group. Eur J Cancer. Epub 2013 Dec 18.
Wilfond BS. Quality Improvement Ethics: Lessons from the SUPPORT Study. Am J Bioeth , 2013: 13(12)14-19
Guon J, Wilfond B, Farlow B, Brazg T, Janvier A. Our Children Are Not a Diagnosis: The Experience of Parents Who Continue Their Pregnancy After a Prenatal Diagnosis of Trisomy 13 or 18. Am J Med Genet A. Epub 2013 Dec 5.
Yi-Frazier JP, Yaptangco M, Semana S, Buscaino E, Thompson V, Cochrane K, Tabile M, Alving E, Rosenberg AR. The Association of Personal Resilience with Stress, Coping, and Diabetes Outcomes in Adolescents with Type 1 Diabetes: Variable- and Person-Focused Approaches. Journal of Health Psychology Epub 2013 Nov 21
Rosenberg AR, Wolfe J, Bradford M, Shaffer M, Yi-Frazier J, Curtis JR, Syrjala KL, Baker KS. Resilience and psychosocial outcomes in parents of children with cancer. Pediatric Blood and Cancer. Nov. 19, 2013: 61(2).
Opel DJ, Heritage J, Taylor JA, Mangione-Smith R, Salas HS, Devere V, Zhou C, Robinson JD. The Architecture of Provider-Parent Vaccine Discussions at Health Supervision Visits. Pediatrics. Epub 2013 Nov 14.
DM Dudzinski. In the Interest of Fairness. Cambridge Quarterly of Healthcare Ethics. 2013;22(4):401-2
Kaci A and Starks H. Caring for the elderly in Algeria within the discourse of traditionalism and modernism: Is there a Kabyle “woman problem”? International Journal of Feminist Approaches to Bioethics. 2013 Oct; 6 (2): 160-178.
Dorschner MO, Amendola LM, Turner EH, Robertson PD, Shirts BH, Gallego CJ, Bennett RL, Jones KL, Tokita MJ, Bennett JT, Kim JH, Rosenthal EA, Kim DS; National Heart, Lung, and Blood Institute Grand Opportunity Exome Sequencing Project, Tabor HK, Bamshad MJ, Motulsky AG, Scott CR, Pritchard CC, Walsh T, Burke W, Raskind WH, Byers P, Hisama FM, Nickerson DA, Jarvik GP. Actionable, pathogenic incidental findings in 1,000 participants' exomes. Am J Hum Genet. 2013 Oct 3;93(4):631-40.
Shaw JL, Robinson R, Starks H, Burke W, Dillard DA. Risk, Reward and the Double-Edged Sword: Views of Pharmacogenetic Testing Among Alaska Native/American Indian People. American Journal of Public Health. 2013 103:12, 2220-2225.
Taylor HA, Wilfond BS. Managing disclosure of research misconduct by a graduate student to a university mental health professional during a clinical counseling session. Am J Bioeth , 2013: 13(10)68
Taylor HA, Wilfond BS. The ethics of contacting family members of a subject in a genetic research study to return results for an autosomal dominant syndrome. Am J Bioeth, 2013: 13(10)61.
Opel DJ, Marcuse EK. Rethinking vaccine policy making in an era of vaccine hesitancy: Time to rebuild, not remodel? Hum Vaccin Immunother. Epub 2013 Oct 1.
Opel DJ, Taylor JA, Zhou C, Catz S, Myaing M, Mangione-Smith R. The Relationship Between Parent Attitudes About Childhood Vaccines Survey Scores and Future Child Immunization Status: A Validation Study. JAMA Pediatr. Epub 2013 Sep 23.
Taylor HA, Kuwana E, Wilfond BS. Challenging cases in research ethics. Am J Bioeth. Epub 2013 Sept 11
Diekema DS. Provider Dismissal of Vaccine-Hesitant Families: Misguided Policy That Fails to Benefit Children. Human Vaccines & Immunotherapeutics Epub 2013 Sept 6.
Starks H, Wang S, Farber S, Owens DA, Curtis JR. Cost savings vary by length of stay for inpatients receiving palliative care consult services. Journal of Palliative Medicine. Epub 2013 Sept 4.
Opel DJ, Banerjee A, Taylor JA. Use of alternative childhood immunization schedules in King County, Washington, USA. Vaccine. Epub 2013 Aug 24.
Burke W, Matheny 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. Epub 2013 Aug 1
Wong CA, Taylor JA, Wright JA, Opel DJ, Katzenellenbogen RA. Missed Opportunities for Adolescent Vaccination, 2006–2011. J Adolesc Health. Epub 2013 Jul 1.
Lev O, Wilfond BS, McBride CM. Enhancing Children Against Unhealthy Behaviors – An Ethical and Policy Assessment of Using a Nicotine Vaccine. Public Health Ethics. 2013 Jul;6(2):197-206.
Wade CH, Tarini BA, Wilfond BS. Growing Up in the Genomic Era: Implications of Whole-Genome Sequencing for Children, Families and Pediatric Practice. Annu Rev Genomics Hum Genet. 2013 Epub Jul 15.
Wilfond BS, Diekema DS, Woodrum D. The OHRP and SUPPORT. N Engl J Med. Epub 2013 Jun 5.
Moreno MA, Goniu N, Moreno PS, Diekema DS. Ethics of Social Media Research: Common Concerns and Practical Considerations. Cyberpsychology, Behavior, and Social Networking. doi:10.1089/cyber.2012.0334. Epub 2013 May 16.
Rosenberg AR, Baker KS, Syrjala KL, Back AL, Wolfe J. Promoting Resilience Among Parents and Caregivers of Children with Cancer. J Palliat Med. June 2013, 16(6): 645-652. Epub 2013, May 6.
Dudzinski DM, Rhodes R, Fiester A. Pedagogical goals for academic bioethics programs. Camb Q Healthc Ethics. 2013 Jul;22(3):284-96. Epub 2013 Apr 30.
Committee on Bioethics, American Academy of Pediatrics (Diekema et al). Policy Statement: Ethical Controversies in Organ Donation After Circulatory Death. Pediatrics 2013; 131(5):1021-1026. Epub 2013 Apr 29.
Mann PC, Woodrum DE, Wilfond BS. Fuzzy Images: Ethical Implications of Using Routine Neuroimaging in Premature Neonates to Predict Neurologic Outcomes. J Pediatr. 2013.03.055 . Epub 2013 Apr 26.
Yu JH, Jamal SM, Tabor HK, Bamshad MJ. Self-guided management of exome and whole-genome sequencing results: changing the results return model. Genet Med. 2013.35. Epub 2013 Apr 25.
Opel DJ, Marcuse EK. Window or mirror: social networks' role in immunization decisions. Pediatrics. 2013 ;131(5):e1619-20. Epub 2013 Apr 15.
Jamal SM, Yu JH, Chong JX, Dent KM, Conta JH, Tabor HK, Bamshad MJ. Practices and Policies of Clinical Exome Sequencing Providers: Analysis and Implications. Am J Med Genet A. 2013; 161(5): 935-950. Epub 2013 Apr 22.
Yu JH, Crouch J, Jamal SM, Tabor HK, Bamshad MJ. Attitudes of African Americans toward return of results from exome and whole genome sequencing. Am J Med Genet A. 2013 May;161(5):1064-72. Epub 2013 Apr 22.
Loggers ET, Starks H, Shannon-Dudley M, Back AL, Appelbaum FR, Stewart FM. Implementing a Death with Dignity program at a comprehensive cancer center. N Engl J Med. 2013;368(15):1417-24. Epub 2013 Apr 11.
Rosenberg AR, Dussel V, Kang T, Geyer JR, Gerhardt CA, Feudtner C, Wolfe J. Psychological Distress in Parents of Children with Advanced Cancer. JAMA Pediatr. 2013;():1-7. Epub 2013 Apr 1.
Opel DJ, Taylor JA, Phillipi CA, Diekema DS. The Intersection of Evidence and Values in Clinical Guidelines: Who Decides What Constitutes Acceptable Risk in the Care of Children? Hospital Pediatrics Apr 1, 2013; 3(2): 87-91.
Doorenbos AZ, Starks H, Bourget E, McMullan DM, Lewis-Newby M, Rue TC, Lindhorst T, Aisenberg E, Oman N, Curtis JR, Hays R, and the Seattle Ethics in ECLS (SEE) Consortium (Jonna D Clark, Harris P Baden, Thomas V Brogan, Jane L Di Gennaro, Robert Mazor, Joan S Roberts, Jessica Turnbull and Benjamin S Wilfond.) Examining Palliative Care Team Involvement in Automatic Consultations for Children on Extracorporeal Life Support in the Pediatric Intensive Care Unit. J Palliat Med. May 2013;16(5): 492-495. Epub 2013 Mar 29.
Marneros AG, Beck AE, Turner EH, McMillin MJ, Edwards MJ, Field M, de Macena Sobreira NL, Perez AB, Fortes JA, Lampe AK, Giovannucci Uzielli ML, Gordon CT, Plessis G, Le Merrer M, Amiel J, Reichenberger E, Shively KM, Cerrato F, Labow BI, Tabor HK, Smith JD, Shendure J, Nickerson DA, Bamshad MJ; University of Washington Center for Mendelian Genomics. Mutations in KCTD1 cause scalp-ear-nipple syndrome. Am J Hum Genet. 2013 Apr 4;92(4):621-6. Epub 2013 Mar 28.
Rosenberg AR, Wolfe J. Palliative care for adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults. 2013 Mar 25:3 41–48.
AAP Task Force on Circumcision (Diekema primary author). Cultural Bias and Circumcision: The AAP Task Force on Circumcision Responds. Pediatrics 2013; 131(4): 801-804. Epub 2013 March 18.
AAP Task Force on Circumcision (Diekema primary author). The AAP Task Force on Neonatal Circumcision: A Call for Respectful Dialogue. Journal of Medical Ethics 2013; March. Epub 2013 March 18.
Walter JK, Rosenberg AR, Feudtner C. Tackling Taboo Topics: How to Have Effective Advanced Care Planning Discussions with Adolescents and Young Adults with Cancer. JAMA Pediatr. 2013;167(5):489-490. Epub 2013 Mar 11.
Vayena E, Mastroianni A, and Kahn, J. 2013. Caught in the Web: Informed consent for online health research. Sci. Transl. Med. 2013 Feb 20;5(173): p. 173fs6.
Opel DJ, Banerjee A, King P, Paul C, Glassy D, and Yasuda K. Washington State Licensed Child Care Facility Directors’ Perspectives on Childhood Immunization. Journal of the Pediatric Infectious Disease Society 2013; 2(1): 40-49.
Ross LF, Saal HM, Anderson R, David K, American Academy of Pediatrics Committee on Bioethics, American Academy of Pediatrics Committee on Genetics, and American College of Medical Genetics and Genomics Social, Ethical, and Legal Issues Committee. Liaisons: Douglas S. Diekema – American Board of Pediatrics. Ethical and Policy Issues in Genetic Testing and Screening of Children: Technical Report. Genetics in Medicine 2013; 15(3):234–245. Epub 2013 Feb 21.
Ross LF, Saal HM, Anderson R, David K, American Academy of Pediatrics Committee on Bioethics, American Academy of Pediatrics Committee on Genetics, and American College of Medical Genetics and Genomics Social, Ethical, and Legal Issues Committee. Liaisons: Douglas S. Diekema – American Board of Pediatrics. Ethical and Policy Issues in Genetic Testing and Screening of Children: Policy Statement. Pediatrics 2013; 131:620–622. Epub 2013 Feb 21.
McCormick JB, Sharp RR, Ottenberg AL, Reider CR, Taylor HA, Wilfond BS. The Establishment of Research Ethics Consultation Services (RECS): An Emerging Research Resource. Clin Transl Sci. Feb 2013; 6(1):40-4.
Melvin AJ, Edwards K, Malone J, Hassell L, Wilfond BS. Role for CTSAs in leveraging a distributed research infrastructure to engage diverse stakeholders in emergent research policy development. Clin Transl Sci. 2013 Feb;6(1):57-9.
Rosen D, Wilfond B, Lantos JD. Obstructive sleep apnea in a 17-year-old with profound cognitive impairment. Pediatrics. 2013 Mar;131(3):581-5. Epub 2013 Feb 4.
Clark JD, Dudzinski DM. The culture of dysthanasia: attempting CPR in terminally ill children. Pediatrics. 2013 Mar;131(3):572-80. Epub 2013 Feb 4.
Opel DJ, Marcuse EK. The enigma of alternative childhood immunization schedules: what are the questions? JAMA Pediatr. 2013 Mar 1;167(3):304-5. Epub 2013 Jan 21.
Rosenberg AR, MacPherson CF, Johnson R. Re-thinking adherence: a proposal for a new approach to risk assessment. Journal of Adolescent and Young Adult Oncology. Epub 2013 Jan 23.