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About the Treuman Katz Center for Pediatric Bioethics

Publications

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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.

2014

Kett JC. Extracorporeal Membrane Oxygenation and an Angel. JAMA Pediatr. 2014;168(4):305.

Diekema, DS. Personal Belief Exemptions to School Vaccination Mandates. Annual Reviews in Public Health. 2014; 35(3): 275-92.

Magnus D, Wilfond B, Caplan A. Accepting Brain Death. N Engl J Med 2014; 370:891-94.

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

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. 

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.

Wilfond, B. Oxygen and Estrogen. Hastings Center Report. 2013 Nov-Dec;43(6): inside back cover.

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).

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.

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.

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.

2012

Opel DJ. Physician, Patient, Parent: Where Exactly Is the Line? The Hastings Center Report. 2012; 4 (6): 14-18.

Kelley M, Edwards K, Starks H, Fullerton S, James R, Goering S, Holland S, Disis M, Burke W. Values in Translation: How Asking the Right Questions Can Move Translational Science Toward Greater Health Impact. Clin Trans Sci 2012; 5(6): 445–451.

Kelley MC, Trinidad SB. Silent loss and the clinical encounter: Parents' and physicians' experiences of stillbirth – a qualitative analysis. BMC Pregnancy and Childbirth 2012, 12:137.

Kelley M, Unguru Y, Myers GD, Lantos JD. An 8-year-old foster child with behavioral problems who needs a bone marrow transplant. Pediatrics. 2012 Nov;130(5):936-40.

The Committee for Pediatric Research, and the Committee on Bioethics (Diekema DS, et al). Policy Statement: Human Embryonic Stem Cell (hESC) and Human Embryo Research. Pediatrics. 2012; 130(5): 972-977.

Tabor HK, Murray JC, Gammill HS, Kitzman JO, Snyder MW, Ventura M, Lewis AP, Qiu R, Simmons LE, Rubens CE, Santillan MK, Eichler EE, Cheng EY, Bamshad MJ, Shendure J. Non-invasive fetal genome sequencing: opportunities and challenges. Am J Med Genet A. 2012 Oct;158A(10):2382-4.

Rosenberg A. How They Do This. Journal of Clinical Oncology. Epub 2012 Sept 24.

Opel DJ, Banerjee A, King P, Paul C, Glassy D, Yasuda K. Washington State Licensed Child Care Facility Directors' Perspectives on Childhood Immunization. Journal of the Pediatric Infectious Disease Society. 2012 Sept 19.

Kelley M. The Invisible Children. Narrative Inquiry in Bioethics. 2012 Fall; 2(2): E4-E6.

Dudzinski DM, Hébert PC, Foglia MB, and Gallagher TH. The Disclosure Dilemma – Large-Scale Adverse Events. N Engl J Med 2012; 363:978-986.

Blank S, Brady M, Buerk E, Carlo W, Diekema DS, MD, Freedman A, Maxwell L, Wegner S. American Academy of Pediatrics. Circumcision Policy Statement. Pediatrics. 2012; 130(3): 585-586.

Blank S, Brady M, Buerk E, Carlo W, Diekema DS, MD, Freedman A, Maxwell L, Wegner S. Male Circumcision. Pediatrics. 2012; 130(3): e756-e785.

Yudell M, Tabor HK, Dawson G, Rossi J, Newschaffer C. Priorities for autism spectrum disorders risk communication and ethics. Autism. 2012 Aug 23.

Janvier A, Farlow B, Wilfond B. The Experience of Families with Children with Trisomy 13 and 18 in Social Networks. Pediatrics 2012 Aug: 130(2)

Opel DJ, Olson ME. Ethics for the Pediatrician: Bioethics Education and Resources. Pediatrics in Review 2012 Aug: 33(8).

Taylor JA, Opel DJ. Choriophobia: A One-Act Play. Pediatrics 2012 Aug: 130(2).

Wilfond B. Predicting Our Future: Lessons from Winnie-the-Pooh. Hastings Cent Rep. 2012 Jul-Aug;42(4):3.

Shear SB, Hart L, Diekema DS. Female Genital Cutting: The Misnomer of Female Circumcision. In The Surgical Guide to Circumcision, Eds. DA Bolnik, M Koyle, and A Yosha. New York: Springer-Verlag, 2012, pp. 281-290.

Emond MJ, Louie T, Emerson J, Zhao W, Mathias RA, Knowles MR, Wright F, Rieder MJ, Tabor HK, Nickerson DA, Barnes KC, NHLBI GO Exome Sequencing Project, ESP-Lung GO Project Group, Gibson RL, Bamshad MJ. Exome sequencing of extreme phenotypes identified DCTN4 as a modifier of chronic pseudomonas aeruginosa infection in cystic fibrosis. Nature Genetics 2012 July 8.

Clark J. Balancing the Tension: Parental Authority and the Perception of Physician Paternalism in End of Life Care. Arch Pediatr Adolesc Med. 2012;166(7):594.

Kitzman JO, Snyder MW, Ventura M, Lewis AP, Qui R, Simmons LE, Gammill HS, Ruben CE, Santillan DA, Murray JC, Tabor HK, Bamshad MJ, Eichler EE, Shendure J. Non-invasive whole genome sequencing of a human fetus. Science Transl Med 2012 Jun: 4 (137).

Wilfond BS, Diekema DS. Engaging Children in Genomics Research: Decoding the Meaning of Assent in Research. Genetics in medicine 2012;14(4):437-43.

Wolf SM, Beskow LM, Cho MK, Christman MF, Crock BN, Green RC, Hall R, Illes J, Kahn JP, Keane M, Knoppers BM, Koenig BA, Kohane IS, Lawrenz F, Leroy B, Maschke KJ, McGeveran W, Ossorio P, Parker LS, Petersen GM, Richardson HS, Scott JA, Terry SF, Van Ness B, Wilfond BS, Wolf WA. Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets. Genetics in medicine 2012;14(4):361-84.

Beskow LM, Fullerton SM, Namey EE, Nelson DK, Davis AM, Wilfond BS. Recommendations for ethical approaches to genotype-driven research recruitment. Hum Genet. 2012 May 24.

Buchanan A, Kelley M. Biodefense and the Production of Knowledge: Rethinking the Problem. Journal of Medical Ethics 2012 May 21.

Tabor HK, Stock J, Brazg T, McMillin MJ, Dent KM, Yu JH, Shendure J, Bamshad MJ. Informed Consent for Whole Genome Sequencing: A Qualitative Analysis of Participant Expectations and Perceptions of Risks, Benefits, and Harms. Am J Med Genet A 2012 158A(6):1310-9.

Diekema DS. Improving Childhood Vaccination Rates. N Engl J Med 2012; 366:391-393

Opel DJ, Robinson JD, Heritage J, Korfiatis C, Taylor JA, Mangione-Smith R. Characterizing providers’ immunization communication practices during health supervision visits with vaccine-hesitant parents: a pilot study. Vaccine. 2012 Feb 8;30 (7):1269-75. Epub 2012 Jan 9.

Opel DJ, Diekema DS. Why We Should Not Eliminate Personal Belief Exemptions to Vaccine Mandates. Journal of Health Policy, Politics, and Law. 2012; 37(1): 111-117.

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