Selected Publications

2016

Edwards JD, Houtrow AJ, Lucas AR, Miller RL, Keens TG, Panitch HB, Dudley RA. Children and Young Adults Who Received Tracheostomies or Were Initiated on Long-Term Ventilation in PICUs. Pediatr Crit Care Med. 17(8):e324-34. 2016.

Fernandes D, Roland A, Morris MC.  Parental Opinions Regarding an Opt-Out Consent Process for Prospective Observational Research Involving Children.  Journal of Pragmatic and Observational Research. In Press.

Hardart GE, Labriola M, Prager K, Morris MC. Consent for organ donation after circulatory death at U.S. transplant centers. AJOB Empirical Bioethics. In Press.

Morris MC, Morris JZ. The importance of virtue ethics in the IRB.  Research Ethics 2016 12(4):201-216

Sabatello M, Appelbaum S. Psychiatric Genetics in Child Custody Proceedings: Ethical, Legal, and Social Issues. Curr Genet Med Rep. 4(3): 98-106. 2016. 

Sabatello M, Appelbaum PS. Raising Genomic Citizens: Adolescents and the Return of Secondary Genomic Findings. J Law Med Ethics. 44(2):292-308. 2016.

 

2015

Lipson M, Hardart GE. Ethics Consultation Volume at U.S. Children's Hospitals: A Cross-Sectional Survey. AJOB Empirical Bioethics. 7(1): 64-70, 2015.

Oberg J, Glade Bender JL, Cohn EG, Morris M, Ruiz J, Chung WK, Appelbaum P, Kung AL, Levine JM. Overcoming Challenges to Meaningful Informed Consent for Whole Genome Sequencing in Pediatric Cancer Research. Pediatric Blood and Cancer 2015 62(8):1374-80

Orfali K, Chiappori PA, Transnational Surrogacy: Exploitative or Empowering. American Journal of Bioethics , 14(5), 2015

Orfali K. (published also in French) “From Privacy to Autonomy: the Core Principle Governing the Body in American Bioethics and Medicine. in Protecting the human body: legal and bioethical perspectives from around the world (in press, 2016) Edited by B. Feuillet , K. Orfali and G.Schwamps, Publisher Bruylant

Sabatello, M., Phelan J., Hesdorffer, D., Shostak, S., Goldsmith, J., Sorge, S., Winawer, M., Chung, W., Ottman, R. (2015). Genetic Causal Attribution of Epilepsy and its Implications, Epilepsia. PMID: 26290354

Sabatello, M. (2015). Regulating Gamete Donation in the U.S.: Ethical, Legal and Social Implications, Laws 4, 352–376. NIHMS712410 Sabatello, M. & Appelbaum, P. S. (2015), Honey, I Sequenced the Kids: Preventive Genomics and the Complexities of Decision Making for Adolescents, AJOB 15(7), 19-21

2014

Edwards JD, Vasilevskis EE, Yoo EJ, Houtrow AJ, Boscardin WJ, Dudley RA, Okumura MJ. Adults with childhood-onset chronic conditions admitted to U.S. pediatric and adult intensive care units. J Critical Care 30(1): 201-206, 2015.

Morris MC, Sachdeva T, Hardart GE. Enrolling brain dead humans in medical research: Stakeholder opinions. AJOB Empirical Bioethics. 5(4):22-29, 2014.

Hardart GE, Chung WK. Genetic testing of children for diseases that have onset in adulthood: The limits of family interests. Pediatrics. 134 Suppl 2:S104-10, 2014 Oct. 

Haward MF, Lorenz JM, John LK, Fischhoff B. Lack of effect of more detail about intensive care and comfort care on delivery room management decisions for extremely preterm infants. Pediatr. In press.

Morris MC, Wilson PT Medical Device Research in Resource-Poor Settings: A Case Study. IRB: Ethics & Human Research. 36(4):1-7, 2014 Jul-Aug.

Orfali K, Janvier A, et al. Canadian Pediatric Statement position for prenatal counselling before a premature birth: Simple rules for complicated decisions. Paediatric Child Health vol. 19, n1, January 2014.

Orfali K, Chaippori PA. Transnational Surrogacy: Exploitative or Empowering? American Journal of Bioethics 14 (5):33-34 (2014).

Lorenz JM, Hardart GE. Evolving medical and surgical management of infants with trisomy 18. Curr Opin Pediatr 2014;26:169-176.

2013

Edwards JD, Houtrow AJ, Vasilevskis EE, Dudley RA, Okumura MJ. Multi-institutional profile of adults admitted to pediatric intensive care units. JAMA Pediatrics 2013; 167(5): 436-443.

Sachdeva T, Morris MC. Higher-Hazard, No Benefit Research Involving Children: Parental Perspectives. Pediatrics November 2013

"Families and End of Life Treatment Decisions. An International Perspective," K.Orfali co-editor with B.Feuillet and T.Callus, Foreword by M.Siegler, Publisher Bruylant, (2013)

Orfali K, Kingori P, DeVries R. Bioethics in the Field. Social Science & Medicine vol.98, December 2013.

2012

Janvier A, Lorenz JM, Lantos JD. Antenatal counselling for parents facing an extremely preterm birth: limitations of the medical evidence. Acta Paediatrica 2012; 101:800-804

Kalkbrenner K, Hardart GE. Informed Consent Practices for Donation After Cardiac Death: A Survey of Organ Procurement Organizations. Journal of Intensive Care Medicine. 27(4): 251–261,2012.

Acres CA, Prager K, Hardart GE, Fins JJ. Credentialing the Clinical Ethics Consultant: An Academic Medical Center Affirms Professionalism and Practice. Journal of Clinical Ethics. 23(2):156-64, 2012.

Edwards JD, Houtrow AJ, Vasilevskis EE, Rehm RS, Markovitz BP, Graham RJ, Dudley RA. Chronic conditions among children admitted to U.S. pediatric intensive care units: their prevalence and impact on risk for mortality and prolonged length of stay. Critical Care Medicine 2012; 40(7): 2196-2203.

Edwards JD, Kun SS, Graham RJ, Keens TG. End-of-life discussions and advance care planning for children on long-term assisted ventilation with life-limiting conditions. Journal of Palliative Care 2012; 28(1): 21-27.

Morris MC. Pediatric participation in non-therapeutic research. The Journal of Law, Medicine, and Ethics. 2012 40(3):665-72.

Orfali K. Beyond numbers: the multiple cultural meaning of rising cesarean rates around the world. American Journal of Bioethics, 2012: 12:7, 54-56.