Bioethics

Publications

Publications

  • Impact of a Pertussis Epidemic on Infant Vaccination in Washington State
    Pediatrics , 2014 Aug. 18 : 456-64
  • Integrating Palliative Care Into the PICU: A Report From the Improving Palliative Care in the ICU Advisory Board
    Pediatr Crit Care Med , 2014 July 30
  • Epidemiology of Death in the PICU at Five U.S. Teaching Hospitals
    Crit Care Med , 2014 June 27 : 42(9)2101-08
  • Phenylketonuria Scientific Review Conference: State of the Science and Future Research Needs
    Molecular Genetics and Metabolism , 2014 June : 112(2)87-122
  • Assent in Research: the Voices of Adolescents
    J Adolescent Medicine , 2014 May : 54(5)515-20
  • How You Start the Conversation Matters
    Minn Med. , 2014 May : 97(5)50-1
  • Accepting Brain Death
    N Engl J Med , 2014 Mar. 6 : 370891-94
  • A 6-Month-Old With Vaccine-Hesitant Parents
    Pediatrics , 2014 Mar. : 133(3)526-30
  • Tracheostomies and Assisted Ventilation in Children with Profound Disabilities: Navigating Family and Professional Values
    Pediatrics , 2014 Feb. : 133(Supplement)S44-S49
  • Parental permission for pilot newborn screening research: guidelines from the NBSTRN
    Pediatrics , 2014 Feb. : 133(2)e410-7
  • 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 , 2014 Feb. : 164(2)308-18
  • Quality Improvement Ethics: Lessons From the SUPPORT Study
    Am J Bioeth , 2013 Dec. : 13(12)14-19
  • The Architecture of Provider-Parent Vaccine Discussions at Health Supervision Visits
    Pediatrics , 2013 Dec. : 132(6)1037-46
  • Rethinking Vaccine Policy Making in an Era of Vaccine Hesitancy: Time to Rebuild, Not Remodel?
    Hum Vaccin Immunother , 2013 Dec. : 9(12)2672-3
  • Family Centered Care at the End of a Child's Life: We Must Get This Right
    Minerva Anestesiol , 2013 Dec. : 79(12)1321-3
  • Oxygen and Estrogen
    Hastings Center Report , 2013 Nov. : 43(6)
  • The Relationship Between Parent Attitudes About Childhood Vaccines Survey Scores and Future Child Immunization Status: a Validation Study
    JAMA Pediatr , 2013 Nov. : 167(11)1065-71
  • Challenging Cases in Research Ethics
    Am J Bioeth , 2013 Oct. : 13(10)60
  • 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 Oct. : 13(10)61
  • Managing disclosure of research misconduct by a graduate student to a university mental health professional during a clinical counseling session
    Am J Bioeth , 2013 Oct. : 13(10)68
  • Use of Alternative Childhood Immunization Schedules in King County, Washington, USA
    Vaccine , 2013 Oct. 1 : 31(42)4699-701
  • Choosing and Using Screening Criteria for Palliative Care Consultation in the ICU: a Report from the Improving Palliative Care in the ICU (IPAL-ICU) Advisory Board
    Crit Care Med , 2013 Oct. : 41(10)2318-27
  • Self-guided management of exome and whole-genome sequencing results: changing the results return model
    Genetics in Medicine , 2013 Sept. : 15(9)684-90
  • Recommendations for returning genomic incidental findings? We need to talk!
    Genet Med , 2013 Aug. : 15(11)85459
  • Growing Up in the Genomic Era: Implications of Whole-Genome Sequencing for Children, Families and Pediatric Practice
    Annu Rev Genomics Hum Genet , 2013 Aug. : 14535-55
  • Fuzzy Images: Ethical Implications of Using Routine Neuroimaging in Premature Neonates to Predict Neurologic Outcomes
    J Pediatr , 2013 Aug. : 163(2)587-592
  • Fuzzy Images: Ethical Implications of Using Routine Neuroimaging in Premature Neonates to Predict Neurologic Outcomes
    Journal of Pediatrics , 2013 Aug. : 163(2)587-592
  • Enhancing Children Against Unhealthy Behaviors An Ethical and Policy Assessment of Using a Nicotine Vaccine
    Public Health Ethics , 2013 July : 6(2)197-206
  • Missed Opportunities for Adolescent Vaccination, 2006-2011
    J Adolesc Health , 2013 July 1 : 53(4)492-7
  • The OHRP and SUPPORT
    The New England journal of medicine , 2013 June 5
  • The OHRP and SUPPORT
    The New England journal of medicine , 2013 June 5
  • The OHRP and SUPPORT
    The New England journal of medicine , 2013 June 5
  • Ethics of Social Media Research: Common Concerns and Practical Considerations
    Cyberpsychology, Behavior, and Social Networking , 2013 May 16 : 16(5)
  • Examining Palliative Care Team Involvement in Automatic Consultations for Children on Extracorporeal Life Support in the Pediatric Intensive Care Unit
    J Palliat Med , 2013 May 13 : 16(5)492-95
  • Examining Palliative Care Team Involvement in Automatic Consultations for Children on Extracorporeal Life Support in the Pediatric Intensive Care Unit
    J Palliat Med , 2013 May 13 : 16(5)492-95
  • Attitudes of African Americans Toward Return of Results From Exome and Whole Genome Sequencing
    American Journal of Medical Genetics Part A , 2013 May : 161(5)1064-72
  • Examining Palliative Care Team Involvement in Automatic Consultations for Children on Extracorporeal Life Support in the Pediatric Intensive Care Unit
    J Palliat Med , 2013 May : 16(5)492-95
  • Policy Statement: Ethical Controversies in Organ Donation after Circulatory Death
    Pediatrics , 2013 Apr, 29 : 131(5)1021-26
  • Fuzzy Images: Ethical Implications of Using Routine Neuroimaging in Premature Neonates to Predict Neurologic Outcomes
    J Pediatr , 2013 Apr, 26
  • Practices and Policies of Clinical Exome Sequencing Providers: Analysis and Implications
    American Journal of Medical Genetics Part A , 2013 Apr, 22 : 161(5)935-50
  • Window or Mirror: Social Networks' Role in Immunization Decisions
    Pediatrics , 2013 Apr, 15 : 131(5)1619-20
  • Mutations in KCTD1 cause scalp-ear-nipple syndrome
    American Journal of Human Genetics , 2013 Apr, 4 : 92(4)621-26
  • The Intersection of Evidence and Values in Clinical guidelines: Who Decides What Constitutes Acceptable Risk in the Care of Children?
    Hospital Pediatrics , 2013 Apr, 1 : 3(2)87-91
  • The Intersection of Evidence and Values in Clinical guidelines: Who Decides What Constitutes Acceptable Risk in the Care of Children?
    Hospital Pediatrics , 2013 Apr, 1 : 3(2)87-91
  • Cultural Bias and Circumcision: The AAP Task Force on Circumcision Responds
    Pediatrics , 2013 Mar. 18 : 131(4)801-4
  • The AAP Task Force on Circumcision 2012
    The AAP Task Force on Neonatal Circumcision: a call for respectful dialogue.
    Journal of medical ethics , 2013 Mar. 18
  • Ethical and Policy Issues in Genetic Testing and Screening of Children: Technical Report
    Genetics in Medicine , 2013 Feb. 21 : 15(3)234-245
  • Policy Statement: Ethical and policy issues in genetic testing and screening of children.
    Genetics in medicine : official journal of the American College of Medical Genetics , 2013 Feb. 21 : 15(3)620-22
  • Obstructive Sleep Apnea in a 17-Year-Old With Profound Cognitive Impairment
    Pediatrics , 2013 Feb. : 131(3)581-5
  • 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
  • The Establishment of Research Ethics Consultation Services (RECS): An Emerging Research Resource
    Clin Transl Sci , 2013 Feb. : 6(1)40-4
  • The Enigma of Alternative Childhood Immunization Schedules: What Are the Questions?
    JAMA Pediatrics , 2013 Jan. 21 : 167(3)304-5
  • Polymorphism in the fetal progesterone receptor and a calcium-activated potassium channel isoform are associated with preterm birth in an Argentinian population
    Journal of Perinatology , 2013 : 33336-340
  • Novel NKX2.1 Mutation Associated with Hypothyoidism and Lethal Respiratory Failure in a Full-Term Neonate
    Journal of Perinatology , 2013 : 33157-60
  • Palliative Care in the Pediatric ICU: Challenges and Opportunities For Family Centered Practice
    Journal of Social Work in End-of-Life and Palliative Care , 2012 Nov. 29 : 8(4)297-315
  • Shand J, Berg J, Bogue C, Committee for Pediatric Research, Committee on Bioethics
    Human embryonic stem cell (hESC) and human embryo research.
    Pediatrics , 2012 Nov. : 130(5)972-7
  • Physician, Parent, Patient: Where Exactly Is the Line?
    Hastings Center Report , 2012 Oct. 15 : 42(6)14-18
  • Li-Fraumeni Syndrome: Report of a Clinical Research Workshop and Creation of a Research Consortium
    Cancer Genet , 2012 Oct. : 205(10)479-87
  • Washington State Licensed Child Care Facility Directors' Perspectives on Childhood Immunization
    Journal of the Pediatric Infectious Disease Society , 2012 Sept. 19 : 2(1)40-9
  • Beskow LM, Fullerton SM, Namey EE, Nelson DK, Davis AM, Wilfond BS
    Recommendations for ethical approaches to genotype-driven research recruitment.
    Human genetics , 2012 Sept. : 131(9)1423-31
  • American Academy of Pediatrics Task Force on Circumcision
    Male circumcision.
    Pediatrics , 2012 Sept. : 130(3)e756-85
  • American Academy of Pediatrics Task Force on Circumcision
    Circumcision policy statement.
    Pediatrics , 2012 Sept. : 130(3)585-6
  • Priorities for autism spectrum disorders risk communication and ethics
    Autism , 2012 Aug. 23
  • Janvier A, Farlow B, Wilfond BS
    The experience of families with children with trisomy 13 and 18 in social networks.
    Pediatrics , 2012 Aug. : 130(2)293-8
  • Ethics for the Pediatrician: Bioethics Education and Resources
    Pediatrics in Review , 2012 Aug. 1 : 33(8)370-73
  • Non-invasive Fetal Genome Sequencing: Opportunities and Challenges
    American Journal of Medical Genetics Part A , 2012 Aug. : 158A(10)2382-84
  • Choriophobia: A One-Act Play
    Pediatrics , 2012 July 9 : 130(2)342-6
  • Exome Sequencing of Extreme Phenotypes Identified DCTN4 as a Modifier of Chronic Pseudomonas Aeruginosa Infection in Cystic Fibrosis
    Nature Genetics , 2012 July 8 : 44(8)886-89
  • Predicting our future: lessons from Winnie-the-Pooh.
    The Hastings Center report , 2012 July : 42(4)3
  • Female Genital Cutting: The Misnomer of Female Circumcision
    Surgical Guide to Circumcision , 2012 July : 281-90
  • The Simulation Team Assessment Tool (STAT): Development, Reliability and Validation
    Resuscitation , 2012 July : 83(7)879-86
  • Balancing the Tension: Parental Authority and the Perception of Physician Paternalism in End of Life Care
    Arch Pediatr Adolesc Med , 2012 July : 166(7)594
  • Non-invasive whole-genome sequencing of a human fetus
    Science Translational Medicine , 2012 June 6 : 4(137)137ra76
  • Informed Consent for Whole Genome Sequencing: A Qualitative Analysis of Participant Expectations and Perceptions of Risks, Benefits, and Harms
    American Journal of Medical Genetics Part A , 2012 June : 158A(6)1310-19
  • Prediction of Survival in Infants with Congenital Diaphragmatic Hernia Based on Stomach Position, Surgical Timing, and Oxygenation Index
    American Journal of Perinatology , 2012 May : 29(5)383-90
  • Wilfond BS, Diekema DS
    Engaging children in genomics research: decoding the meaning of assent in research.
    Genetics in medicine : official journal of the American College of Medical Genetics , 2012 Apr, : 14(4)437-43
  • Wilfond BS, Diekema DS
    Engaging children in genomics research: decoding the meaning of assent in research.
    Genetics in medicine : official journal of the American College of Medical Genetics , 2012 Apr, : 14(4)437-43
  • Integrating Palliative Care in the Surgical and Trauma Intensive Care Unit: A Report From the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care
    Crit Care Med , 2012 Apr, 1 : 40(4)1199 - 1206
  • Physician Reimbursement For Critical Care Services Integrating Palliative Care For Critically Ill Patients
    Chest , 2012 Mar. 1 : 141(3)787-92
  • Characterizing Providers Immunization Communication Behaviors during Health Supervision Visits with Vaccine-Hesitant Parents: A Pilot Study
    Vaccine , 2012 Feb. 8 : 30(7)1269-75
  • Improving childhood vaccination rates.
    The New England journal of medicine , 2012 Feb. : 366(5)391-3
  • Beskow LM, Namey EE, Cadigan RJ, Brazg T, Crouch J, Henderson GE, Michie M, Nelson DK, Tabor HK, Wilfond BS
    Research participants' perspectives on genotype-driven research recruitment.
    Journal of empirical research on human research ethics : JERHRE , 2011 Dec. : 6(4)3-20
  • Tabor HK, Brazg T, Crouch J, Namey EE, Fullerton SM, Beskow LM, Wilfond BS
    Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.
    Journal of empirical research on human research ethics : JERHRE , 2011 Dec. : 6(4)41-52
  • Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment
    Journal of empirical research on human research ethics : JERHRE , 2011 Dec. : 6(4)41-52
  • Genomics Really Gets Personal: How Exome and Whole Genome Sequencing Challenge the Ethical Framework of Human Genetics Research
    American Journal of Medical Genetics Part A , 2011 Dec. : 155A(12)2916-24
  • Research Participants Perspectives on Genotype-driven Research Recruitment
    Journal of empirical research on human research ethics : JERHRE , 2011 Dec. : 6(4)3-20
  • Measuring Family Satisfaction with Care and Quality of Dying in the Intensive Care Unit: Does Patient Age Matter?
    J Palliat Med , 2011 Dec. : 14(12)1284-90
  • Washington State Pediatricians Attitudes Towards Alternative Childhood Immunization Schedules
    Pediatrics , 2011 Nov. 28 : 128(6)1094-9
  • Tarini BA, Tercyak KP, Wilfond BS
    Commentary: Children and predictive genomic testing: disease prevention, research protection, and our future.
    Journal of pediatric psychology , 2011 Nov. : 36(10)1113-21
  • The False Dichotomy: Do Everything or Give Up
    Amer J Bioethics , 2011 Nov. : 11(11)26-7
  • Opel DJ, Diekema DS
    Finding the proper balance between freedom and justice: why we should not eliminate personal belief exemptions to vaccine mandates.
    Journal of health politics, policy and law , 2011 Oct. 14 : 37(1)141-7
  • Finding the proper balance between freedom and justice: why we should not eliminate personal belief exemptions to vaccine mandates
    Journal of health politics, policy and law , 2011 Oct. 14 : 37(1)141-7
  • Parental Requests for Interventions in Children With Lethal Conditions in Clinical Ethics in Pediatrics: A Case Based Textbook
    Cambridge University Press , 2011 Oct. : 174-180
  • Clinical Ethics in Pediatrics: A Case-based Textbook
    Cambridge University Press , 2011 Oct.
  • When Institutional, Professional, and Public Health Obligations Conflict: The Controversial Case of Youth Boxing in Clinical Ethics in Pediatrics: A Case-based Textbook
    Cambridge University Press , 2011 Oct. : 211-14
  • The Impaired, Incompetent, and Unethical Provider in Clinical Ethics in Pediatrics: A Case-based Textbook
    Cambridge University Press , 2011 Oct. : 231-34
  • Parental Refusals of Vaccination and School Vaccine Mandates: Balancing Parental Freedom, Child Welfare, and Public Health in Clinical Ethics in Pediatrics: A Case-based Textbook
    Cambridge University Press , 2011 Oct. : 205-10
  • Parental Refusals of Recommended Medical Interventions in Clinical Ethics in Pediatrics: A Case-based Textbook
    Cambridge University Press , 2011 Oct. : 14-7
  • Reasons to think twice before calling CPS about morbid obesity
    AAP Grand Rounds , 2011 Oct. : 26(4)48
  • Parental Refusals of Vaccination and School Vaccine Mandates: Balancing Parental Freedom, Child Welfare, and Public Health In Clinical Ethics in Pediatrics: A Case-based Textbook
    Cambridge University Press , 2011 Oct. : 205-10
  • Exome sequencing as a tool for Mendelian disease gene discovery
    Nature Reviews Genetics , 2011 Sept. 27 : 12(11)745-55
  • A Multi-Center, Qualitative Assessment of Pediatrician and Parental Perspectives in Addressing the Detection of Porcine Circovirus in Rotavirus Vaccines
    BMC Pediatrics , 2011 Sept. 26 : 11:83
  • Response to the Commentary: Children and Predictive Genomic Testing
    J Pediatr Psychol , 2011 Sept. 9 : 36(10)1128-9
  • The Power of Knowledge: How Carrier and Prenatal Screening Altered the Clinical Goals of Genetic Testing in Achieving Justice in Genome Translation: Rethinking the Pathway to Benefit
    Oxford University Press , 2011 Sept.
  • The Autism Genetic Resource Exchange: Changing Pace, Priorities and Role in Discovery Science in Achieving Justice in Genome Translation: Rethinking the Pathway to Benefit
    Oxford University Press , 2011 Sept. : 56-71
  • Examining the Quest to Eliminate Discrepancies in IRB Decisions
    AJOB Primary Research , 2011 Aug. : 2(2)34-6
  • Clinical Report: Maternal-Fetal Intervention and Fetal Care Centers
    Pediatrics , 2011 Aug. : 128e473-78
  • Committee on Pediatric Emergency Medicine and Committee on Bioethics
    Policy Statement: Consent for emergency medical services for children and adolescents.
    Pediatrics , 2011 Aug. : 128(2)427-33
  • Adolescent refusal of lifesaving treatment: are we asking the right questions?
    Adolescent medicine: state of the art reviews , 2011 Aug. : 22(2)213-28
  • Construct Validity of a Survey to Identify Vaccine-Hesitant Parents
    Vaccine , 2011 July 16 : 29(38)
  • Population Carrier Screening: Psychological Impact
    Wiley & Sons , 2011 July 15 : eLS
  • Spectrum of MLL2 (ALR) mutations in 110 cases of Kabuki syndrome
    American Journal of Medical Genetics Part A , 2011 July : 155A(7)1511-16
  • Nishisaki A, Diekema DS
    Mind the gap and narrowing it: family presence during pediatric resuscitation and invasive procedures.
    Resuscitation , 2011 June : 82(6)655-6
  • Revisiting the best interest standard: uses and misuses.
    The Journal of clinical ethics , 2011 June : 22(2)128-33
  • Bioethical Considerations in Autism Research and Translation: Present and Future in Autism Spectrum Disorders
    Oxford University Press , 2011 June : 1337-44
  • Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study
    Pediatrics , 2011 June 1 : 127(6)1094 - 1101
  • Tercyak KP, Hensley Alford S, Emmons KM, Lipkus IM, Wilfond BS, McBride CM
    Parents' attitudes toward pediatric genetic testing for common disease risk.
    Pediatrics , 2011 May : 127(5)e1288-95
  • Waitress in The Picture of Health: Medical Ethics and the Movies
    Oxford University Press , 2011 May : 186-91
  • Richer J, Ghebremichael MS, Chudley AE, Robinson WM, Wilfond BS, Solomon MZ
    Research use of leftover newborn bloodspots: attitudes of Canadian geneticists regarding storage and informed consent requirements.
    Genetics in medicine : official journal of the American College of Medical Genetics , 2011 Apr, : 13(4)305-13
  • Development of a Survey to Identify Vaccine Hesitant Parents: The Parental Attitudes about Childhood Vaccines Survey
    Human Vaccines , 2011 Apr, 1 : 7(4)419-25
  • Rosenthal MS, Diekema DS
    Pediatric ethics guidelines for hereditary medullary thyroid cancer.
    International journal of pediatric endocrinology , 2011 Mar. : 847603
  • Introducing Home-Based Palliative Care and Hospice in the Textbook of Interdisciplinary Pediatric Palliative Care
    Elsevier, Philadelphia , 2011 Feb. 9 : 195-199
  • Opel DJ, Diekema DS, Marcuse EK
    Not Just a Bad Apple, but a Bad Barrel: The Biomedical Research System in the Wake of Wakefield
    BMJ , 2011 Jan. 22 : 342179 - 80
  • Not Just a Bad Apple, but a Bad Barrel: The Biomedical Research System in the Wake of Wakefield
    BMJ , 2011 Jan. 22 : 342.179-80
  • Growth Attenuation: Health Outcomes and Social Services
    Hastings Center Report , 2011 : 41(5)7-8
  • Patient Perspectives on Group Benefits and Harms in Genetic Research
    Public Health Genomics , 2011 : 14(3)135-42
  • Myers RE, Manne SL, Wilfond B, Sifri R, Ziring B, Wolf TA, Cocroft J, Ueland A, Petrich A, Swan H, DiCarlo M, Weinberg DS
    A randomized trial of genetic and environmental risk assessment (GERA) for colorectal cancer risk in primary care: trial design and baseline findings.
    Contemporary clinical trials , 2011 Jan. : 32(1)25-31
  • Bone Marrow Donation Between Siblings Living in Different Families
    Pediatrics , 2011 Jan. : 127(1)158-62