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The Sociology and Ethics
of Neonatology

Bibliography for
Housestaff and Parents

At the turn of the 20th century, there was little that a physician could do for premature infants except keep them warm, feed them breast milk, isolate them from strangers and each other, weigh them daily, and hope for the best. In fact, many premature infants were cared for at home, with incubators that were built from scrap materials as necessary or rented for the occasion.

As technology became more complex, and care of infants became the exclusive domain of specialized units within hospitals, the sociology and ethics of neonatal care became more complex as well. Many tragic episodes in the history of neonatology testified to the dangers of aggressive treatment for treatment's sake, or the rash adoption of new techniques or drugs without carefully controlled trials. Parents and breastmilk were excluded in favor of formulas and antiseptic, controlled environments.

At the turn of the 21st century, the importance of parental participation and breastmilk are again fully recognized. "Rooming in" and "Kangaroo care" are bywords. But the questions of "who is the best advocate for the baby" and "when is the extraordinary use of technology appropriate" and "what is an acceptable outcome" have become increasingly unclear, blurred further by the application of concepts like "cost-effectiveness" to critical care, even as our ability to rescue incredibly small infants has continued to improve.

We've listed a number of books and articles on this page for further reading in the sociology and ethics of neonatology. A variety of viewpoints are represented here and no endorsement is implied for any of them.

Books on Sociology and Ethics

"Baby Doe," by H. William Taeusch, Wheatmark, 2021. ISBN 1627878130.

"Breathe, Baby, Breathe!: Neonatal Intensive Care, Prematurity, and Complicated Pregnancies," by Annie Janvier, University of Toronto Press, 2020. ISBN 1487523068.

"Religion and Ethics in the Neonatal Intensive Care Unit," by Ronald M. Green and George A. Little, Oxford University Press, 2019. ISBN 0190636858.

"Ethical Dilemmas for Critically Ill Babies," by Eduard Verhagen and Annie Janvier, Springer, 2015. ISBN 9401773599.

"Neonatal Bioethics: The Moral Challenges of Medical Innovation," by John D. Lantos and William L. Meadow, Johns Hopkins University Press, 2008. ISBN 9780801890895.

"The Lazarus Case: Life-and-Death Issues in Neonatal Intensive Care (Medicine and Culture)," by John D. Lantos, John Hopkins University Press, 2007. ISBN 0801887704.

"Extreme Prematurity: Practices, Bioethics and the Law," by Geoffrey Miller, Cambridge University Press, 2006. ISBN 0521862213.

"To Treat or Not to Treat: The Ethical Methodology of Richard A. McCormick S.J., As Applied to Treatment Decisions for Handicapped Newborns," by Peter A. Clark, Creighton University Press, 2003. ISBN 1881871444.

"When the Bough Breaks: Parental Perceptions of Ethical Decision-Making in NICU," 2002, UPA. ISBN 0761823166.

"Newborn Medicine and Society," by Murdina MacFarquhar Desmond, Eakin Press, 1998. ISBN 1-57168-219-8.

"Where's the Evidence? Debates in Modern Medicine," by William A. Silverman, Oxford University Press, 1998. ISBN 0-19-263088-1.

"Deciding Who Lives: Fateful Choices in the Intensive-Care Nursery," by Renee R. Anspach, University of California Press, 1993. ISBN 0-520-05268-4.

"Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine," by Albert R. Jonsen et al, McGraw-Hill Inc., 1992. ISBN 0-07-105392-1.

"To Treat Or Not To Treat: Bioethics and the Handicapped Newborn," by Richard C. Sparks, Paulist Press, 1988. ISBN 0-8091-2993-0.

"Mothers and Medicine: A Social History of Infant Feeding," by Rima D. Apple, University of Wisconsin Press, 1987. ISBN 0-299-11484-8.

"A Time to Be Born, A Time to Die," by Rasa Gustaitis and Ernle W. D. Young, Addison-Wesley, 1986. ISBN 0-201-11555-7.

"Mixed Blessings: Intensive Care for Newborns," by Jeanne Harley Guillemin and Lynda Lytle Holmstrom, Oxford University Press, 1986. ISBN 0-19-50432-5.

"Playing God in the Nursery," by Jeff Lyon. W. W. Norton, 1985. ISBN 0-393-01898-9.

"Selective Nontreatment of Handicapped Newborns," by Robert Weir, Oxford University Press, 1984. ISBN 0-19-503396-5.

"Coping with Caring for Sick Newborns," by Richard E. Marshall, Christine Kasman, and Linda S. Cape, W. B. Saunders Co., 1982. ISBN 0-7216-6122-X.

"Retrolental Fibroplasia: A Modern Parable," by William A. Silverman, Grune and Stratton, 1980. ISBN 0-8089-1264-X.

"Maternal-Infant Bonding," by Marshall H. Klaus and John H. Kennell, C. V. Mosby Company, 1976. ISBN 0-8016-2630-7.

Articles Focused on Caregiver Roles, Ethics, and Decision-Making

"Rapid Challenges: Ethics and Genomic Neonatal Intensive Care," by Gyngell C et al, Pediatrics. 2019 Jan;143(Suppl 1):S14-S21. doi: 10.1542/peds.2018-1099D.

"Ethical issues in neonatal intensive care units," by Liu J et al, J Matern Fetal Neonatal Med. 2016;29(14):2322-6. doi: 10.3109/14767058.2015.1085016. Epub 2015 Sep 18.

"Rights of the newborn and end-of-life decisions," by GuimarĂ£es H et al, J Matern Fetal Neonatal Med. 2012 Apr;25 Suppl 1:76-8. doi: 10.3109/14767058.2012.665240. Epub 2012 Mar 7.

"The history of ethical decision making in neonatal intensive care," by Placencia FX et al, J Intensive Care Med. 2011 Nov-Dec;26(6):368-84. doi: 10.1177/0885066610393315. Epub 2011 May 23.

"Moral Reflections on Neonatal Intensive Care," by William Meadow and John Lantos, Pediatrics 123(2):595-597, February 2009.

"Epidemiology, economics, and ethics in the NICU: reflections from 30 years of neonatology practice," by Meadow, W., Journal of Pediatric Gastroenterology & Nutrition. 45 Suppl 3:S215-7, 2007 Dec.

"Evidence-based ethics and the care and outcome of extremely premature infants. [Review]," by Tyson JE et al, Clinics in Perinatology. 30(2):363-87, 2003 Jun.

"Deciding for imperilled newborns: medical authority or parental autonomy?" by McHaffie HE et al, Journal of Medical Ethics. 27(2):104-9, 2001 Apr.

"Attitudes of healthcare professionals concerning extremely preterm infants in the delivery room. A regional study," by Sizun J et al, Acta Paediatrica. 88(7):789-90, 1999 Jul.

"Decision Making in the Neonatal Intensive Care Environment," by R. P. A. Rivers, British Medical Bulletin 52(2):238-245, 1996.

"The Changing Nature of Neonatal Ethics in Practice," by Kathy Kinlaw, Clinics in Perinatology 23(3):417-428, September 1996.

"Ethical dilemmas in the neonatal intensive care unit," by Berseth CL, Mayo Clinic Proceedings. 62(1):67-72, 1987 Jan.

"Critical Issues in Newborn Intensive Care: A Conference Report and Policy Proposal," by A. R. Jonsen et al, Pediatrics 55(6):756-768, June 1975.

"The Role of the Pediatric Nurse Practitioner in a Neonatal Unit," by Enrique M. Ostrea et al, Journal of Pediatrics 86(4):628-631, April 1975.

"The Neonatal Nurse Practitioner," by Thomas L. Slovia et al, American Journal of Diseases of Children 128:310-314, Sept. 1974.

"At the Bedside," by John H. Talbott, New England Journal of Medicine 277(3):109-114, July 20, 1967.

Articles Focused on Extreme Prematurity Survival and Outcome

"Temporal Trends in Neurodevelopmental Outcomes to 2 Years After Extremely Preterm Birth," by Cheong JLY et al, JAMA Pediatr. Published online July 19, 2021. doi:10.1001/jamapediatrics.2021.2052.

"Trends in survival, neonatal morbidity and neurodevelopmental outcome of very preterm infants in Tainan, Southern Taiwan, 1995-2016", by Wang LW, et al, Journal of the Formosan Medical Association. 120(6):1314-1323, 2021 Jun.

"Survival and causes of death in extremely preterm infants in the Netherlands," by Van Beek PE, et al, Archives of Disease in Childhood Fetal & Neonatal Edition. 106(3):251-257, 2021 05.

"Continued improvement in morbidity reduction in extremely premature infants," by Kaempf J, et al, Archives of Disease in Childhood Fetal & Neonatal Edition. 106(3):265-270, 2021 May.

"Actuarial Survival Based on Gestational Age in Days at Birth for Infants Born at <26 Weeks of Gestation," by Shah P, et al, Journal of Pediatrics. 225:97-102.e3, 2020 10.

"Perinatal care provided for babies born at 23 and 24 weeks of gestation," by Dawes L, et al, Australian & New Zealand Journal of Obstetrics & Gynaecology. 60(1):158-161, 2020 02.

"Trends in Outcomes for Neonates Born Very Preterm and Very Low Birth Weight in 11 High-Income Countries," by Lui K, et al, Journal of Pediatrics. 215:32-40.e14, 2019 12.

"Improved survival of very preterm born infants from 2000 to 2013 in Denmark," by Logavlen VV, Danish Medical Journal. 66(12), 2019 Dec.

"Racial and Ethnic Differences Over Time in Outcomes of Infants Born Less Than 30 Weeks' Gestation," by Boghossian NS, et al, Pediatrics. 144(3), 2019 09.

"Survival and Impairment of Extremely Premature Infants: A Meta-analysis," by Myrhaug HT, Pediatrics. 143(2), 2019 02.

"Outcomes following a comprehensive versus a selective approach for infants born at 22 weeks of gestation," by Backes CH, et al, Journal of Perinatology. 39(1):39-47, 2019 01.

"Proactive approach at the limits of viability improves the short-term outcome of neonates born after 23 weeks' gestation," by Simjack, Patrik et al, Journal of Perinatal Medicine. 46(1):103-111, 2018 Jan 26.

"Outcome of extremely preterm infants after iatrogenic or spontaneous birth," by Fritz T, et al, Acta Obstetricia et Gynecologica Scandinavica. 97(11):1388-1395, 2018 Nov.

"Variability of Very Low Birth Weight Infant Outcome and Practice in Swiss and US Neonatal Units," by Adams M, et al, Pediatrics. 141(5), 2018 05.

"Outcomes and related factors in a cohort of infants born in Taiwan over a period of five years (2007-2011) with borderline viability," by Chang JH, et al, Journal of the Formosan Medical Association. 117(5):365-373, 2018 May.

"Survival in Very Preterm Infants: An International Comparison of 10 National Neonatal Networks," by Helenius K, et al, Pediatrics. 140(6), 2017 Dec.

"Survival of Infants Born at Periviable Gestational Ages. [Review]," by Patel RM, et al, Clinics in Perinatology. 44(2):287-303, 2017 06.

"Mortality Rates for Extremely Low Birthweight Infants Born in Japan in 2005," by Kazuo Itabashi, MD, et al, Pediatrics 123(2):445-450, February 2009.

"Restraining the Unsustainable," by WIlliam A. Silverman, MD, Pediatrics 111(3):672-674, March 2003.

"Born-Alive Infants Protection Act of 2001, Public Law No. 107-207," American Academy of Pediatrics Neonatal Resuscitation Program Steering Committee, Pediatrics 111(3):680-681, March 2003.

"Perinatal Care at the Threshold of Viability," by Hugh MacDonald, MD and the AAP Committee on Fetus and Newborn, Pediatrics 110(5):1024-1027, November 2002.

"Attitudes of Parents and Health Care Professionals Toward Active Treatment of Extremely Premature Infants," by David L. Streiner et al, Pediatrics 108(1):152-157, July 2001.

"Treatment Decisions for Newborns at the Threshhold of Viability: An Ethical Dilemma," by Robin W. Doroshow et al, Journal of Perinatology 20:379-383, 2000.

"Perinatal Care at the Threshhold of Viability," by the Committee on Fetus and Newborn, American Academy of Pediatrics, Pediatrics 96(5):974-976, November 1995.

"The Extremely Low Birthweight Infant: Ethical Issues in Treatment," by V. Y. H. Yu, Australian Paediatric Journal 23:97-103, 1987.

"Ethical Dilemmas in the Treatment of the Extremely Low Birth Weight Infant," by Gordon B. Avery, Clinics in Perinatology 14(2):361-365, June 1987.

"Ethical Issues in Caring for Tiny Infants," by Kenneth L. Vaux, Clinics in Perinatology 13(2):477-484, June 1986.

Articles Focused on Resource Allocation

"Extremely premature infants, scarcity and the COVID-19 pandemic," by Kaempf JW et al, Acta Paediatr. 2021 Apr;110(4):1100-1103. doi: 10.1111/apa.15651. Epub 2020 Nov 18.

"Too Expensive to Treat? Non-Treatment Decisions at the Margins of Viability," by Flessas T and Jackson E., Med Law Rev. 2019 Aug 1;27(3):461-481. doi: 10.1093/medlaw/fwy035.

"The Contribution of Preterm Birth to Infant Mortality Rates in the United States, by William M. Callaghan et al, Pediatrics 118(4):1566-1573, October 2006.

"Is More Neonatal Intensive Care Always Better? Insights From a Cross-National Comparison of Reproductive Care," by Lindsay A. Thompson et al, Pediatrics 109(6):1036-1043, June 2002.

"The Relation Between the Availability of Neonatal Intensive Care and Neonatal Mortality," New England Journal of Medicine 346(20):1538-1544, May 16, 2002.

"Restricting Access to Neonatal Intensive Care: Effect on Mortality and Cost Savings," by J. W. Stolz and M. C. McCormick, Pediatrics 101(3 Pt 1):344-348, March 1998.

Articles Focused on Cost of Care

"Making Neonatal Intensive Care Cost Effective," by Sharma D et al, J Matern Fetal Neonatal Med. 2021 Jul;34(14):2375-2383. doi: 10.1080/14767058.2019.1660767. Epub 2019 Sep 3.

"Costs of Neonatal Intensive Care for Canadian Infants with Preterm Birth," by Rios JD et al, J Pediatr. 2021 Feb;229:161-167.e12. doi: 10.1016/j.jpeds.2020.09.045. Epub 2020 Sep 23.

"Rapid Challenges: Ethics and Genomic Neonatal Intensive Care," by Gyngell C et al, Pediatrics. 2019 Jan;143(Suppl 1):S14-S21. doi: 10.1542/peds.2018-1099D.

"The disproportionate cost of operation and congenital anomalies in infancy," by Apfeld JC et al, Surgery. 2019 Jun;165(6):1234-1242. doi: 10.1016/j.surg.2018.12.022. Epub 2019 May 3.

"Too Expensive to Treat? Non-Treatment Decisions at the Margins of Viability," by Flessas T et al, Med Law Rev. 2019 Aug 1;27(3):461-481. doi: 10.1093/medlaw/fwy035.

"Cost Effectiveness of Neonatal Resuscitation at 22 Weeks of Gestation," by Yiel L et al, Obstet Gynecol. 2019 Jun;133(6):1199-1207. doi: 10.1097/AOG.0000000000003264.

"Improving Value in Neonatal Intensive Care," by Ho T et al, Clin Perinatol. 2017 Sep;44(3):617-625. doi: 10.1016/j.clp.2017.05.009. Epub 2017 Jun 16.

"Short term cost of care for the surviving periviable neonate," by Allen KM et al, J Neonatal Perinatal Med. 2017;10(2):191-194. doi: 10.3233/NPM-171655.

"Evaluation of neonatal intensive care for extremely-low-birth-weight infants," by Doyle LW, Semin Fetal Neonatal Med. 2006 Apr;11(2):139-45. doi: 10.1016/j.siny.2005.11.009. Epub 2006 Jan 5.

"A critical review of cost reduction in neonatal intensive care. I. The structure of costs," by Richardson DK et al, J Perinatol. 2001 Mar;21(2):107-15. doi: 10.1038/sj.jp.7200502.

"Measuring the Cost of Neonatal and Perinatal Care," by J. Rogowski, Pediatrics 103(1 Suppl E):329-335, Jan. 1999.

"Cost-Effectiveness of Care for Very Low Birth Weight Infants," by J. Rogowski, Pediatrics 102(1 Pt 1):35-43, July 1998.

"Neonatal Intensive Care and Cost-Effectiveness," by G. W. Chance, CMAJ 139(10):943-946, November 15, 1988.

"Costs and Benefits of Neonatal Intensive Care," by P. O. Pharoah et al, Arch. Dis. Child. 63(7 Spec No):715-718, July 1988.

"Cost of Neonatal Intensive Care for Very-Low-Birthweight Infants," by B. Sandhu et al, Lancet 1(8418):600-603, March 15, 1986.

"The Cost of Care of the Less-than-1000-gram Infant," by J. A. Hernandez et al, Clinics in Perinatology 13(2):461-476, June 1986.

Articles Focused on Resuscitation

"Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology," by Janvier A et al, Semin Perinatol. 2014 Feb;38(1):38-46. doi: 10.1053/j.semperi.2013.07.007.

"Controversies in neonatal resuscitation," by Chalkias A et al, J Matern Fetal Neonatal Med. 2013 Oct;26 Suppl 2:50-4. doi: 10.3109/14767058.2013.829685.

"The ethics and practice of neonatal resuscitation at the limits of viability: an international perspective," by Fanaroff JM et al, Acta Paediatr. 2014 Jul;103(7):701-8. doi: 10.1111/apa.12633. Epub 2014 Apr 3.

"The ethics of neonatal resuscitation at the margins of viability: informed consent and outcomes," by Janvier A et al, J Pediatr. 2005 Nov;147(5):579-85. doi: 10.1016/j.jpeds.2005.06.002.

"Decisions Regarding Resuscitation of the Extremely Premature Infant and Models of Best Interest," by Steven R. Leuthner, Journal of Perinatology 21:193-198, 2001.

"Ethical Issues Surrounding Resuscitation," by Robert J. Boyle and John Kattwinkel, Clinics in Perinatology 26(3):779-792, Sept. 1999.

"Ethical Decisions in the Delivery Room," by Jay P. Goldsmith et al, Clinics in Perinatology 23(3):529-550, Sept. 1996.

Articles Focused on Withdrawing or Withholding Support

"Too Expensive to Treat? Non-Treatment Decisions at the Margins of Viability," by Flessas T et al, Med Law Rev. 2019 Aug 1;27(3):461-481. doi: 10.1093/medlaw/fwy035.

"End-of-life decisions as bedside rationing. An ethical analysis of life support restrictions in an Indian neonatal unit," by Miljeteig I et al, Journal of Medical Ethics. 36(8):473-8, 2010 Aug.

"Infants of borderline viability: ethical and clinical considerations. [Review]," by Chiswick M., Seminars In Fetal & Neonatal Medicine. 13(1):8-15, 2008 Feb.

"Withholding treatment, withdrawing treatment, and palliative care in the neonatal intensive care unit," Walther FJ, Early Human Development. 81(12):965-72, 2005 Dec.

"The ethics of withholding/withdrawing nutrition in the newborn. [Review]," by Carter BS, Seminars in Perinatology. 27(6):480-7, 2003 Dec.

"Death in the Intensive Care Nursery: Physician Practice of Withdrawing and Withholding Life Support," by Stephen N. Wall and John Colin Partridge, Pediatrics 99(1):64-70, January 1997.

"Analgesia for Dying Infants Whose Life Support is Withdrawn or Withheld," by John Colin Partridge and Stephen N. Wall, Pediatrics 99(1):76-79, January 1997.

"Parental Discretion in Refusal of Treatment for Newborns: A Real but Limited Right," by John J. Paris and Michael D. Schreiber, Clinics in Perinatology 23(3):573-582, September 1996.

"Foregoing Intensive Care Treatment in Newborn Infants with Extremely Poor Prognoses," by Richard de Leeuw et al, Journal of Pediatrics 129:661-666, 1996.

"Neonatologists Judge the 'Baby Doe' Regulations," by Loretta M. Kopelman et al, NEJM 318(11):677-683, March 17, 1988.

"The Baby Doe Rule," by David K. Stevenson et al, JAMA 255(14):1909-1912, April 11, 1986.

"Guidelines for Infant Bioethics Committees," by the Infant Bioethics Task Force and Consultants, Pediatrics 74(2):306-310, August 1984.

"Ethical Dilemmas in Perinatal Medicine," by Mildred T. Stahlman, Journal of Pediatrics 94(3):516-520, March 1979.

Created 4/20/2002 / Last modified 8/1/2021
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