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
  • Silent Loss and the Clinical Encounter: Parents' and Physicians' Experiences of Stillbirth - A Qualitative Analysis
    BMC Pregnancy and Childbirth , 2012 Nov. 27 : 12:1371471 - 2393
  • 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
  • An 8-year-old Foster Child with Behavioral Problems Who Needs a Bone Marrow Transplant
    Pediatrics , 2012 Oct. 8 : 130(5)936 - 40
  • 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
  • Values in Translation: How Asking the Right Questions Can Move Translational Science Toward Greater Health Impact
    Clin Trans Sci , 2012 Aug. 7 : 5(6)445 - 51
  • 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
  • Wolf SM, Crock BN, Van Ness B, Lawrenz F, Kahn JP, Beskow LM, Cho MK, Christman MF, Green RC, Hall R, Illes J, Keane M, Knoppers BM, Koenig BA, Kohane IS, Leroy B, Maschke KJ, McGeveran W, Ossorio P, Parker LS, Petersen GM, Richardson HS, Scott JA, Terry SF, Wilfond BS, Wolf WA
    Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
    Genetics in medicine : official journal of the American College of Medical Genetics , 2012 Apr, : 14(4)361-84
  • 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
  • The Invisible Children
    Journal of Narrative Inquiry in Bioethics , 2012 : 2(2)E4-E6
  • Biodefence and the Production of Knowledge: Rethinking the Problem
    J Med Ethics , 2011 Dec. 22 : 39(4)195 - 204
  • 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
  • An Integrated Systems Biology Approach to the Study of Preterm Birth Using "-omic" Technology - A Guideline for Research
    BMC Pregnancy and Childbirth , 2011 Oct. 12 : 11:71
  • 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
  • Refusals of Treatment in Adolescents and Young Adults in Clinical Ethics in Pediatrics: A Case-based Textbook
    Cambridge University Press , 2011 Oct. : 23-6
  • 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
  • Conclusion: Genomic Medicine and Health Disparities in Achieving Justice in Genomic Translation: Rethinking the Pathway to Benefit
    Oxford University Press , 2011 Sept. 15 : 197 - 204
  • 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
  • Counting Stillbirths: Women's Health and Reproductive Rights
    The Lancet , 2011 Apr, 14 : 377(9778)1636 - 37
  • 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