Publications

Selected Publications

 

2018

Orfali K.,” Getting the Story Straight: Clinical Ethics as a Distinctive Field”, American Journal of Bioethics, Jun;18 (6):62-64 (2018)

Sabatello, M. (2018). A Genomically Informed Education System? Challenges for Behavioral Genetics. Journal of Law, Medicine, and Ethics 46(1): 130-144.

Sabatello, M., Callier, S., Garrison, N., Cohn, L. (2018). Trust, precision medicine research, and equitable participation of underserved populations. AJOB 18(4): 1-3.

Sabatello, M., Janvier A., Verhagen, E., Morrison, W., Lantos, J. (2018). Pediatric Participation in Medical Decision-making: Optimized or Personalized? AJOB 18(3):1-3.

Bester, J., Sabatello, M., van Karnebeek, C., and Lantos, J. (2018). Ethics Rounds: Please Test My Child for a Cancer Gene, But Don’t Tell Her. Pediatrics 141(4): e20172238.

Sabatello, M. (2018). Precision Medicine, Health Disparities and Ethics: The Case for Disability Inclusion. Genetics in Medicine 20(4): 397-399.

Rosenthal SL, Morris MC, Hoffman LF, Zimet GD. Inclusion of Adolescents in STI/HIV Biomedical Prevention Trials: Autonomy, Decision-Making, and Parental Involvement. Clinical Practice in Pediatric Psychology 2018.

Bush L, Bartoshesky L, David K, Wilfond B, Williams J & Holm I. Pediatric Clinical Exome/Genome Sequencing and the Engagement Process: Encouraging Active Conversations with the Older Child and Adolescent: Points to Consider—a Statement of the American College of Genetics and Genomics. Genet Med adv online publ 22 March 2018 doi:10.1038/gim.2018.36. PMID29565417

Bush L, Beck A, Biesecker L, Evans J, Hamosh A, Holm I, Martin C, Richards S & Rehm H. Professional Responsibilities Regarding the Provision, Publication, and Dissemination of Patient Phenotypes in the Context of Clinical Genetic and Genomic Testing: Points to Consider—a Statement of the American College of Genetics and Genomics. Genet Med. 2018; 20(2):169-71 doi:10.1038/gim.2017.242.

Wein Bush L. Navigating a Complex Ethical Landscape Paved with Omics in the Prenatal, Newborn, and Pediatric Period: Current Challenges, Controversies, Considerations. J Molecular Genetics and Metabolism March 2018

Pyle AK, Fleischman AR, Hardart G, Mercurio MR. Management options and parental voice in the treatment of trisomy 13 and 18. J Perinatol. 2018 Jul 6. PMID: 29977011

Bruce CR, Jankowski J, Chanko BL, Cordes A, Humberman BJ, Johnson LM, Kasman DL, Katz A, Robinson EM, Wasson K, Hardart GE. The Work of ASBH's Clinical Ethics Consultation Affairs Committee: Development Processes Behind Our Educational Materials. J Clin Ethics. 2018 Summer;28(2):150-157. PMID: 29916832

2017

*Terry ME, Freedberg DE, Morris MC. An Alternative Consent Process for Minimal Risk Research in the Intensive Care Unit. Critical Care Medicine 2017 45(9):1450-6 PubMed ID: 28617695

 

*Hardart GE, Labriola MK, Prager K, Morris MC. Consent for organ donation after circulatory death at U.S. transplant centers. American Journal of Bioethics: Empirical Bioethics 2017 8(3);205-210

Morris MC, Rosenthal SL. Pregnancy Testing of Adolescents During Clinical Research: Managing the Process. IRB: Ethics and Human Research 2017 39(2)

 

Edwards JE, Morris MC, Nelson JE, Panitch HB, Miller RL. The view of directors of home ventilation programs on decisions around long-term ventilation for children with life-limiting conditions Annals of the American Thoracic Society, 2017 14(10):1538-47.

 

*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 2017 2017(8)1-8.

Orfali K., “Extreme Prematurity: Creating Iatrogenic Lives”, American Journal of Bioethics, vol.17, (8) (2017)

Sabatello, M., and Appelbaum, P.S. (2017). Behavioral Genetics in Criminal and Civil Courts. Harvard Review of Psychiatry, 25(6): 289-301.

Sabatello, M. (2017). Psychiatric Genomics and Public Mental Health in the Young Mind. AJOB 17(4): 27-29.

Sabatello, M., and Appelbaum, P.S. (2017). The Precision Medicine Nation. Hastings Center Report, 47 (2017): 19-29.

2016

Sabatello, M. (2016), Children with Psychiatric Disabilities: Bioethical & Genomic Dilemmas, in The Handbook of Children’s Rights: Global and Multidisciplinary Perspectives (Martin Ruck, Michele Peterson-Badali, and Michael Freeman, eds.), 328-346 (Taylor and Francis Publishers, 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

Paul E., Starc T., Orfali K. “Hypoplastic Left Heart Syndrome: Exploring a Paradigm Shift in Favor of Surgery”. Pediatric Cardiology 2016 Mar.

Orfali K. “From the Notion of Privacy to the Principle of Autonomy: The Rules Governing the Body in American Bioethics and Medicine”, in Feuillet B., Orfali K, Schamps G.(Eds). Protecting the Human Body: Legal and Bioethical Perspectives around the World, Bruylant Publishing, 2016.

Book: Feuillet B.,Orfali K, Schamps G.(Eds). Protecting the Human Body: Legal and Bioethical Perspectives around the World, Bruylant Publishing, 2016.

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.