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.
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.
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.
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.
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.
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.
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
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.