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The Ethical Dimension: Moral Decision-Making About Preterm Birth

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Preterm Birth in the United States
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Abstract

This chapter focuses on the ways that ethics and morality are defined in the context of high-risk pregnancies and preterm births in the U.S.: which values and principles are invoked, how authority and agency to make moral decisions are understood, and what types of ethical problems commonly occur. Ethical problems include conflicts between two moral principles held by the same individual, conflicts between the moral views of different parties, and conflicts over which parties have the standing to be involved in ethical decisions. Three sets of ethical decisions are examined in the context of high-risk pregnancies: whether women should receive multiple embryo transfers during in vitro fertilization (IVF) (a practice which increases the risk of preterm birth), whether pregnant women can be required against their own preferences to receive certain prenatal screenings, and who makes decisions about prenatal interventions. The chapter then examines ethical concerns in the decisions around resuscitation and the provision of life support for preterm newborns. For all of these decisions, the chapter reviews moral principles held and acted on by clinical care providers, by pregnant women and their families, and by the third parties who represent societal interests. Discussion of ethical issues in Canada, Great Britain, and Western Europe reflect all of the same concerns, but also, because of the publicly financed nature of their healthcare systems in these countries, consider the ethics of resource expenditures, an issue that is seldom openly discussed in the U.S.

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Notes

  1. 1.

    Several other aspects of the Tuskegee study, including its persistence after the immorality of conducting research without subject consent was acknowledged, continued deception of participants and attempts to restrict their access to syphilis treatment, lead most observers to the conclusion that the study violated research ethics other than the expectation of informed consent at entry (Parker and Alvarez 2003).

  2. 2.

    The self-governance paradigm is most compatible with the framework of virtue ethics in philosophy.

  3. 3.

    For example, in January 2015, 36 year-old Erica Morales, a Phoenix woman who was pregnant with quadruplets after undergoing IVF, died of blood loss after an emergency cesarean section. The procedure was conducted when she was 31 weeks pregnant and experiencing extreme blood pressure elevation (Campbell 2015). Her four preterm infants survived, and are under the care of their widowed father (Keating 2015).

  4. 4.

    These options were proposed as hypothetical choices in a large study of couples who underwent IVF. Many of these options are not actually offered to IVF patients, due to legal restrictions (e.g., prohibitions against stem cell research with embryos) and fertility clinic practices. The primary option for most IVF patients is freezing of embryos, and most respondents simply prolonged freezing because of few desirable alternative options (Lyerly et al. 2010).

  5. 5.

    The ethics of prenatal genetic screening has been extensively scrutinized because it raises so many issues, including the impact of expanding technology, the balance of risks and benefits of screening, whether termination of an affected pregnancy can be considered a benefit, how clinical personnel can reasonably adopt a position of ethical neutrality when advising patients on prenatal genetic screening, and whether having the “gift of knowledge” about fetal abnormalities actually enhances a pregnant woman’s autonomy in decision-making, see (Allyse et al. 2015; Chervenak et al. 2008; Farsides et al. 2004; Kenan 1996).

  6. 6.

    In 2001, the Supreme Court ruled in favor of 10 South Carolina women who sued their prenatal care provider, the Medical University of South Carolina in Charleston, for screening them for drug use without their explicit consent and turning the positive results over to local law enforcement authorities. The basis of the ruling was that the screening constituted illegal search and seizure because it was used for legal and not therapeutic purposes; it is not clear whether the expectation for explicit patient consent for prenatal drug screening, if it is used for therapeutic purposes, has the force of law (Gostin 2001; Sikich 2005).

  7. 7.

    This comment is also interesting because it indicates how the clinical reasoning around prescribing bed rest during high-risk pregnancies reflects beliefs about medicine—that action is preferable to no action—and social reproduction—that fetuses are separable from mothers and that the health of the mother can appropriately be sacrificed for the benefit of the fetus.

  8. 8.

    In fact, they note, physicians would not be liable if they failed to seek a court order for a recommended intervention, but would be liable if they proceeded with surgery without maternal consent.

  9. 9.

    Data from this study was used to create a web-based tool for estimating survival ranges with and without impairment, given gestational age, birth weight, sex, singleton or multiple status, and use of corticosteroids. This tool is available at www.nichd.nih.gov/about/org/der/branches/ppb/programs/bepo/Pages/epbo_case.aspx.

References

  • Abel, E. L., & Kruger, M. (2002). Physician attitudes concerning legal coercian of pregnant alcohol and drug abusers. American Journal of Obstetrics and Gynecology, 186(4), 768–772.

    Article  PubMed  Google Scholar 

  • ACOG Committee on Ethics. (2005). Maternal decision making, ethics and the law. Obstetrics and Gynecology, 106(5 pt 1), 1127–1137.

    Google Scholar 

  • ACOG Committee on Ethics. (2007a). Human immunodeficiency virus ACOG Committee Opinion: American College of Obstetricians and Gynecologists.

    Google Scholar 

  • ACOG Committee on Ethics. (2007b). Patient testing: Ethical issues in selection and counseling ACOG Committee Opinion (Confirmed in 2012 ed.). Obstetrics and Gynecology, 109(4), 1021–1023.

    Google Scholar 

  • ACOG Committee on Ethics. (2015). Alcohol abuse and other substance use disorders: Ethical issues in obstetric and gynecologic practice. Obstetrics and Gynecology, 125(6), 1529–1537.

    Article  Google Scholar 

  • ACOG Committee on Health Care for Underserved Women. (2011). Substance abuse reporting and pregnancy: The role of the obstetrician-gynecologist ACOG Committee Opinion: American College of Obstetricians and Gynecologists.

    Google Scholar 

  • Allyse, M., Sayres, L. C., Goodspeed, T., Michie, M., & Cho, M. K. (2015). “Don’t want no risks and don’t want no problems”: Public understandings of the risks and benefits of noninvasive prenatal testing in the United States. AJOB Empirical Bioethics, 6(1), 5–20.

    Article  PubMed  PubMed Central  Google Scholar 

  • ASRM. (2012). Elective single embryo transfer. Fertility and Sterility, 97(4), 835–842.

    Article  Google Scholar 

  • BabyCenter.com. (2013) Refusing terbutaline? December 2013 Birth Club forum. Retrieved from http://community.babycenter.com/post/a45092023/refusing_terbutaline

  • Barnwell, C., & Bammer, G. (2006). Maternal habits: Narratives of mothering, social position and drug use. International Journal of Drug Policy, 17(6), 504–513.

    Article  Google Scholar 

  • Bastek, T. K., Richardson, D. K., Zupanic, J. A. F., & Burns, J. P. (2005). Prenatal consultation practices at the border of viability: A regional survey. Pediatrics, 116(2), 407–413.

    Article  PubMed  Google Scholar 

  • Bazerman, M. H., & Tenbrunsel, A. E. (2011). Blind spots. Why we fail to do what’s right and what to do about it. Princeton: Princeton University Press.

    Google Scholar 

  • Bell, E. F. (2007). Non-initiation of withdrawal of intensive care for high risk newborns. Pediatrics, 119(2), 401–403.

    Article  PubMed  Google Scholar 

  • Bell, L. (2011). The fate of frozen embryos. Parenting. Retrieved from www.parenting.com/article/the-fate-of-frozen-embryos

  • Benedek, T. G., & Erlen, J. (1999). The scientific environment of the Tuskegee study of syphilis. Perspectives in Biology and Medicine, 43(1), 1–30.

    Article  CAS  PubMed  Google Scholar 

  • Bissonnette, F., Phillips, S. J., Gunby, J., Holzer, H., Mahutte, N., St. Michel, P., et al. (2011). Working to eliminate multiple pregnancies: A success story in Quebec. Reproductive Biomedicine Online, 23(4), 500–504.

    Google Scholar 

  • Bopp, J., & Nimz, M. (1992). A legal analysis of the child abuse amendments of 1984. In A. L. Caplan, R. H. Blank & J. C. Merrick (Eds.), Compelled compassion. Government Intervention in the treatment of critically ill newborns. Totowa NJ: Humana Press.

    Google Scholar 

  • Boss, R. D., Hutton, N., Sulpar, L. J., M., W. A., & Donohue, P. K. (2008). Values parents apply to decision-making regarding delivery room resuscitation for high risk newborns. Pediatrics, 122(3), 583–589.

    Google Scholar 

  • Bridges, K. M. (2011). Reproducing race: An ethnography of pregnancy as a site of racialization. Berkely: University of California Press.

    Google Scholar 

  • Brown, S. D., Donelan, K., Buchmiller, T. L., Sayeed, S. A., Mitchell, C., & Ecker, J. L. (2012). Differing attitudes toward fetal care by pediatric and maternal-fetal medicine specialists. Pediatrics, 130(6), e1534–e1540.

    Article  PubMed  Google Scholar 

  • Caitlin, A. J. (1999). Physicians’ neonatal resuscitation of extremely low-birth-weight infants. Image: Journal of Nursing Scholarship, 31(3), 269–275.

    Google Scholar 

  • Caitlin, A. J. (2005). Thinking outside the box. Prenatal care and the call for a prenatal advance directive. Journal of Perinatal & Neonatal Nursing, 19(2), 169–176.

    Article  Google Scholar 

  • Campbell, O. (2015, February 17). When it comes to IVF, who should call the shots? Pacific Standard.

    Google Scholar 

  • Canadian FASD Research Network. (2014). Substance use during pregnancy. An overview of key Canadian policy and practice areas: Canada FASD research network action team on prevention from a woman’s health determinants perspective. Retrieved from http://bccewh.bc.ca/2014/09/substance-use-during-pregnancy-an-overview-of-key-canadian-policy-and-practice-areas/

  • Cantor, J. D. (2012). Court-ordered care—A complication of pregnancy to avoid. New Eng J Medicine, 366(24), 2237–2240.

    Article  CAS  Google Scholar 

  • Caplan, R. L., Light, D. W., & Daniels, N. (1999). Benchmarks of fairness, a moral framework for assessing equity. International Journal of Health Services, 29(4), 853–869.

    Article  CAS  PubMed  Google Scholar 

  • Carter, B. S., & Rosenkrantz, T. (2015, January 16). Ethical issues in neonatal care. Medscape. Retrieved from http://emedicine.medscape.com/article/978997-overview

  • Carusi, D., Learman, L., & Posner, S. F. (1998). Human immunodeficiency virus test refusal in pregnancy: A challenge to voluntary testing. Obstetrics and Gynecology, 91(4), 540–545.

    CAS  PubMed  Google Scholar 

  • Casper, M. J. (1996). The making of the unborn patient: A social anatomy of fetal surgery. New Brunswick, New Jersey: Rutgers University Press.

    Google Scholar 

  • Chalmers, I. (1986). Minimizing harm and maximizing benefit during health care: Controlled or uncontrolled experimentation? Birth, 13(3), 165–174.

    Article  Google Scholar 

  • Chasnoff, I. J., Landress, H. J., & Barrett, M. E. (1990). The prevalence of illicit-drug or alcohol use during pregnancy and discrepencies in mandatory reporting in Pinellas County, Florida. New England Journal of Medicine, 322(17), 1202–1206.

    Article  CAS  PubMed  Google Scholar 

  • Chervenak, F. A., & McCullough, L. B. (1985). Perinatal ethics: A practical method of analysis of obligations to mother and fetus. Obstetrics and Gynecology, 66(3), 442–446.

    CAS  PubMed  Google Scholar 

  • Chervenak, F. A., McCullough, L. B., Sharma, G., Davis, J., & Gross, S. (2008). Enhacing patient autonomy with risk assessment and invasive diagnosis: An ethical solution to a clinical challenge. American Journal of Obstetrics and Gynecology, 199(19), E1–E4.

    Google Scholar 

  • Collin, C. (2001). National drug policy: France. Library of Parliament, Canada: Senate special committee on illegal drugs. Retrieved from http://www.parl.gc.ca/content/sen/committee/371/ille/library/france-e.htm

  • Culpepper, L., & Gilbert, T. T. (1999). Evidence and ethics. The Lancet, 353(9155), 829–831.

    Article  CAS  Google Scholar 

  • Culver, G., Fallon, K., Londner, R. B., Vila, B., Ramsey, B. J., Ramsey, C. S. … Wolding, T. (2000). Informed decisions for extremely low-birth-weight infants. JAMA, 283(24), 3201–3202.

    Google Scholar 

  • Cummings, J. (2015). Antenatal counseling regarding resuscitation and intensive care before 25 weeks of gestation. Pediatrics, 136(3), 588–595.

    Article  PubMed  Google Scholar 

  • Cutler, D. M., & Meara, E. (2000). The technology of birth: Is it worth it? Frontiers in Health Policy Research, 3, 33–67.

    Article  Google Scholar 

  • Cuttini, M., Casotto, V., de Vonderweid, U., Garel, M., Kollee, L. A., & Saracci, R. (2009). Neonatal end-of-life decisions and bioethical perspectives. Early Human Development, 85(10 Suppl), 521–525.

    Google Scholar 

  • Cuttini, M., Habiba, M., Nilstun, T., Donfrancesco, S., Garel, M., Arnaud, C. … Saracci, R. (2006). Patient refusal of emergency cesarean Delivery: A study of obstetricians’ attitudes in Europe. Obstetrics and Gynecology, 108(5), 1121–1129.

    Google Scholar 

  • Cuttini, M., Nadai, M., Kaminski, M., Hansen, G., De Leeuw, R., Persson, J. … Saracci, R. (2000). End-of-Life decisions in neonatal intensive care; physicians’ self-reported practices in seven European countries. EURONIC Study Group. Lancet, 355(9221), 2112–2118.

    Google Scholar 

  • Cuttini, M., Rebagliato, M., Bortoli, P., Hansen, G., de Leeuw, R., Lenoir, S. …. Saracci, R. (1999). Parental visiting, communication and participation in ethical decisions: A comparison of neonatal unit policies in Europe. Archives of Diseases of Children, Fetal and Neonatal Edition, 81(2), (F84–F91).

    Google Scholar 

  • Dailard, C., & Nash, E. (2000). State responses to substance abuse among pregnant women. Guttmacher Report on Public Policy, 3(6), 3–6.

    Google Scholar 

  • Dawson, T. B. (1990). Re baby R. A comment on fetal apprehension. Canadian Journal of Women & The Law, 4(1), 265–275.

    Google Scholar 

  • De Neubourg, D., Bogaerts, K., Wyns, C., Albert, A., Camus, M., Candeur, M. … D’Hooghe, T. (2013). The history of Belgian assisted reproduction technology cycle registration and control: A case study in reducing the incidence of multiple pregnancy. Human Reproduction, 28(10), 2709–2719.

    Google Scholar 

  • DeLeeuw, R., Cuttini, M., & Nadai, M. (2000). Treatment Choices for extremely preterm infants: an international perspective. Journal of Pediatrics, 137(5), 608–616.

    Article  CAS  Google Scholar 

  • Department of Health (England) and the devolved administrations. (2007). Drug misuse and dependence: UK guidelines on clinical management. In UK guidelines on clinical management. London: Department of Health (England), the Scottish Government, Welsh Assembly Government and the Northern Ireland Executive. Retrieved from http://www.nta.nhs.uk/uploads/clinical_guidelines_2007.pdf

  • Deshpande, N., & Oxford, C. (2012). Management of pregnant patients who refuse medically indicated cesarean delivery. Reviews in Obstetrics and Gynecology, 5(3–4), e144–e150.

    PubMed  PubMed Central  Google Scholar 

  • Doyle, L. W., & The Victorian Infant Collaborative Study Group. (2004). Evaluation of neonatal intensive care for extremely low birth weight infants in victoria over two decades. II Efficiency. Pediatrics, 113(3), 510–514.

    Article  Google Scholar 

  • Dragatsi, D., Mejia, B. R., Polania, L. M., & Sirulnik, L. (2013). Court-mandated outpatient psychiatric care for a pregnant woman with psychosis: A unique bridge to alliance. Journal of Psychiatric Practice, 19(3), 247–253.

    Article  PubMed  Google Scholar 

  • Draper, H. R. (1996). Women, forced cesarean sections and antenatal reponsibilities. Journal of Medical Ethics, 22(6), 327–333.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Drug Commissioner of the Federal Government (Germany). (2012). National Strategy on Drug Addiction and Control: Commission on Drug Use.

    Google Scholar 

  • Dyer, C. (1998). Trusts face damages after forcing women to have cesareans. BMJ, 316(7143), 1480.

    PubMed  Google Scholar 

  • Ellington, M., Richardson, D. K., & Pursely, D. M. (1997). Early deaths in Chicago and New England. Pediatrics, 99(5), 753–754.

    Article  PubMed  Google Scholar 

  • Fallon, K. (2004). Compassion or opportunism (letter). Pediatrics, 114(3), 897.

    Article  PubMed  Google Scholar 

  • Farsides, B., Williams, C., & Alderson, P. (2004). Aiming towards “Moral Equilibrium”: Health care professionals’ views on working within the morally contested field of antenatal screening. Journal of Medical Ethics, 30(5), 505–509.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Fei, D. (2014, February 9). My Baby and AOL’s bottom line. Slate.com.

    Google Scholar 

  • Fei, D. (2015). Girl in glass. How my “distressed baby” defied the odds, shamed a CEO, and taught me the essence of love, heartbreak and miracles. New York: Bloomsbury.

    Google Scholar 

  • Fentiman, L. C. (2009a). In the name of fetal protection: Why American prosecutors pursue pregnant drug users (and other countries don’t). Columbia Journal of Gender and Law, 18(2), 647–669.

    Google Scholar 

  • Fentiman, L. C. (2009b). Pursuing the perfect mother: Why America’s criminalization of maternal substance abuse is not the answer—A comparative legal analysis. Michigan Journal of Gender and Law, 15(2), 389.

    Google Scholar 

  • Flavin, J. (2002). A glass half full? Harm reduction among pregnant women who use cocaine. Journal of Drug Issues, 32(3), 973.

    Article  Google Scholar 

  • Fordyce, L. (2012). Imagining maternal responsibility. Prenatal diagnosis and ultrasound among haitians in South Florida. In L. Fordyce & A. Maraesa (Eds.), Risk, Reproduction, and Narratives of Experience (pp. 191–209). Nashville: Vanderbilt University Press.

    Google Scholar 

  • Gaucher, N., & Payot, A. (2011). From powerlessness to empowerment: Mothers expect more than information from the prenatal consultation for preterm labour. Paediatrics and Child Health, 16(10), 638–642.

    PubMed  PubMed Central  Google Scholar 

  • Gleicher, N., Weghofer, A., & Barad, D. (2006). A formal comparison of the practice of assisted reproductive technologies between Europe and the USA. Human Reproduction, 21(8), 1945–1950.

    Article  PubMed  Google Scholar 

  • Good, M. J. D. (1995). American medicine: The quest for competence. Berkely: University of California Press.

    Book  Google Scholar 

  • Gostin, L. O. (2001). The rights of pregnant women: The supreme court and drug testing. Hastings Center Report, 31(5), 8–9.

    Article  CAS  PubMed  Google Scholar 

  • Grobman, W. A., Kavanaugh, K., Moro, T., DeRegnier, R.-A., & Savage, T. (2010). Providing advice to parents for women at acutely high risk of periviable delivery. Obstetrics & Gynaecology, 115(5), 904–909.

    Article  Google Scholar 

  • Guillemin, J. H., & Holmstrom, L. L. (1986). Mixed blessings: Intensive care for newborns. Oxford: Oxford University Press.

    Google Scholar 

  • Guttmacher Institute. (2015). Substance use during pregnancy State Policies in Brief. New York: Guttmacher Institute.

    Google Scholar 

  • Habiba, M., Kaminski, M., Da Fre, M., Marsal, K., Bleher, O., Librero, J. … Cuttini, M. (2006). Cesarean section on request: A comparison of obstetricians’ attitudes in eight European Countries. British Journal of Obstetrics and Gynaecology, 113(6), 647–656.

    Google Scholar 

  • Hack, M., Forrest, C. B., Schluchter, M., Taylor, G., Drotar, D., Holmbeck, G., et al. (2011). Health status of extremely-low-birth-weight children at 8 years of age, child and parent perspectives. Archives of Pediatric and Adolescent Medicine, 165(10), 922–927.

    Google Scholar 

  • Harris, L. H. (2000). Rethinking maternal-fetal conflict: Gender and equality in perinatal ethics. Obstetrics and Gynecology, 96(5), 786–791.

    CAS  PubMed  Google Scholar 

  • Harrison, H. (1993). The principles for family-centered neonatal care. Pediatrics, 82(5), 643–650.

    Google Scholar 

  • Harrison, H. (2008). Managing death and end of life decisions in perinatal medicine. The offer they can’t refuse. Seminars in Fetal and Neonatal Medicine, 13(5), 329–334.

    Article  PubMed  Google Scholar 

  • Hueston, W. J. (1992). A critical assessment of preterm labor prevention strategies. Journal of Family Practice, 35(1), 81–89.

    CAS  PubMed  Google Scholar 

  • Hunt, L. M., & de Voogd, K. B. (2003). Autonomy, danger and choice: The moral imperative of an “at-risk” pregnancy for a group of low income Latinas in Texas. In L. Oaks & B. H. Harthorn (Eds.), Risk, culture and health inequity: Shifting perceptions of danger and blame (pp. 37–56). Westport CT: Praeger Publishers.

    Google Scholar 

  • Janvier, A., LeBlanc, I., & Barrington, K. J. (2008). Nobody likes preemies: The relative value of patients’ lives. Journal of Perinatology, 28(2), 821–826.

    Article  CAS  PubMed  Google Scholar 

  • Johnsen, D. E. (1986). The creation of fetal rights: Conflicts with women’s constitutional rights to liberty, privacy and equal protection. Yale Law Journal, 95(3), 599–625.

    Article  PubMed  Google Scholar 

  • Jonsen, A. R. (2012). Neonatal ethics. Morality in the valley of the moon: The origin if the ethics of neonatal intensive care. Theoretical Medicine Bioethics, 33(1), 65–74.

    Article  Google Scholar 

  • Jonsen, A. R., Phibbs, R. H., Tooley, W. H., & Garland, M. J. (1975). Critical issues in newborn intensive care: A conference report and policy proposal. Pediatrics, 55(6), 756–768.

    CAS  PubMed  Google Scholar 

  • Jos, P. H., Marshall, M. F., & Perlmutter, M. (1995). The Charleston policy on cocaine use during pregnancy: A cautionary tale. Journal of Law, Ethics and Public Policy, 2(2), 120–128.

    Google Scholar 

  • Jungheim, E. S., Ryan, G. L., Levens, E. D., Cunningham, A. F., Macones, G. A., Carson, K. R. … Odem, R. R. (2008). Embryo transfer practices in the United States: A survey of clinics registered with the society for assisted reproductive technology. Fertility and Sterility, 94(4), 1432–1436.

    Google Scholar 

  • Kavanaugh, K., Savage, T., Kilpatrick, S., Kimura, R., & Hershberger, P. (2005). Life support decisions for extremely premature infants: Report of a pilot study. Journal of Pediatric Nursing, 20(5), 347–358.

    Article  PubMed  Google Scholar 

  • Keating, C. (2015, February 28). Dad cares for quadruplets after wife’s tragic death in childbirth. People Magazine.

    Google Scholar 

  • Keenan, H. T., Doron, M. W., & Seyda, B. A. (2005). Comparison of mothers’ and counselors’ perceptions of predelivery counseling for extremely premature infants. Pediatrics, 116(1), 104–111.

    Article  PubMed  Google Scholar 

  • Kenan, R. (1996). The at-risk health status and technology: A diagnostic invitation and the ‘gift of knowing’. Social Science and Medicine, 42(11), 1545–1553.

    Article  Google Scholar 

  • Kliegman, R. H. (1995). Neonatal technology, perinatal survival, social consequences and the perinatal paradox. American Journal of Public Health, 85(7), 909–913.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Kolder, V. E., Gallagher, J., & Parsons, M. T. (1987). Court-ordered obstetrical interventions. The New England Journal of Medicine, 316(19), 1192–1196.

    Article  CAS  PubMed  Google Scholar 

  • Kopelman, L. M. (2005). Are the 21-year-old baby doe rules misunderstood or mistaken? Pediatrics, 115(3), 797–802.

    Article  PubMed  Google Scholar 

  • Kopelman, L. M. (2009). Disputes over moral standards guiding treatments for imperiled infants. Seminars in Perinatology, 33(6), 372–376.

    Article  PubMed  Google Scholar 

  • Kyser, K., Morriss, F. H., Bell, E. F., & Klein, J. M. (2012). Improving survival of extremely preterm infants born between 22 and 25 weeks gestation. Obstetrics and Gynecology, 119(4), 795–800.

    Article  PubMed  Google Scholar 

  • Laidlaw, J. (2002). For an anthropology of ethics and freedom. Journal of the Royal Anthropological Institute, 8(2), 311–332.

    Article  Google Scholar 

  • Laidlaw, J. (2014). The subject of virtue. An anthropology of ethics and freedom. New York: Cambridge University Press.

    Google Scholar 

  • Lantos, J. D., & Meadow, W. L. (2006). Neonatal bioethics. The moral challenge of medical innovation. Baltimore. MD: The Johns Hopkins University Press.

    Google Scholar 

  • Lantos, J. D., Mokalla, M., & Meadow, W. L. (1997). Resource allocation in neonatal and medical ICUs. Epidemiology and rationing at the extremes of life. American Journal of Respiratory and Critical Care Medicine, 156(1), 185–189.

    Article  CAS  PubMed  Google Scholar 

  • Lemmens, C. (2010). End of life decisions and pregnant women: Do pregnant women have the right to refuse life preserving medical treatment? A comparative study. European Journal of Health Law, 17(5), 485–505.

    Article  PubMed  Google Scholar 

  • Leppo, A. (2012). Subutex is safe: Perceptions of risk in using illicit drugs during pregnancy. International Journal of Drug Policy, 23(5), 365–373.

    Article  PubMed  Google Scholar 

  • Leviton, A. (1995). Editorial: The perinatal paradox. American Journal of Public Health, 85(7), 906–907.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Lorenz, J., Paneth, N., Jetton, J., den Ouden, L., & Tyson, J. (2001). Comparison of management strategies for extreme prematurity in New Jersey and the Netherlands: Outcomes and resource expenditures. Pediatrics, 108(6), 1269–1274.

    Article  CAS  PubMed  Google Scholar 

  • Lorenz, J. M. (2004). Compassion and perplexity. Pediatrics, 113(2), 403–404.

    Article  PubMed  Google Scholar 

  • Lyerly, A. D., Little, M. O., & Faden, R. R. (2008). A critique of the fetus as patient. American Journal of Bioethics, 8(7), 42–44.

    Article  PubMed  PubMed Central  Google Scholar 

  • Lyerly, A. D., Steinhauser, K., Voils, C., Namey, E., Alexander, C., Bankowski, B. … Wallach, E. (2010). Fertility patients views about frozen embryo disposition: Results of a multi-institutional U.S. Survey. Fertility and Sterility, 93(2), 499–509.

    Google Scholar 

  • Macklin, R. (1998). Ethical relativism in a multicultural society. Kennedy Institute of Ethics Journal, 8(1), 1–22.

    Article  PubMed  Google Scholar 

  • Maheshwari, A., Griffiths, S., & Bhattacharya, S. (2011). Global variation in the uptake of single embryo transfer. Human Reproduction Update, 17(1), 107–120.

    Article  PubMed  Google Scholar 

  • Mahgroub, L., van Manen, M., Byrne, P., & Tyebkhan, J. M. (2014). Policy change for infants born at the “cusp of viability”: A Canadian NICU experience. Pediatrics, 134(5), e1405–e1410.

    Article  Google Scholar 

  • Maio, G. (2002). The cultural specificity of medical ethics- or why ethical debate in France is different. Journal of Medical Ethics, 28(1), 147–150.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Malm, H. M. (1999). Medical screening and the value of early detection: When unwarranted faith leads to unethical recommendations. Hastings Center Report, 29(1), 26–37.

    Article  CAS  PubMed  Google Scholar 

  • Marshall, P. (2006). Informed consent in international health research. Journal of Empirical Research on Human Research Ethics, 1(1), 25–41.

    Article  PubMed  Google Scholar 

  • Martin, J. A., Hamilton, B. E., Osterman, M. J. K., Curtin, S. C., & Mathews, T. J. (2015). Births: Final data for 2013 National Vital Statistics Reports (Vol. 60). Rockville, MD: National Center for Health Statistics.

    Google Scholar 

  • Matevosyan, N. R. (2012). Court-visited obstetrical and fertility procedures. Archives of Gynecology and Obstetrics, 285(5), 1195–1203.

    Article  PubMed  Google Scholar 

  • Mattingly, C. (2014). Moral laboratories: Family peril and the struggle for a good life. Berkely: University of California Press.

    Book  Google Scholar 

  • Mattingly, S. (1992). The maternal-infant dyad: Exploring the two patient model. Hastings Center Report, Jan–Feb, 13–18.

    Google Scholar 

  • McCall, C., Grimes, D. A., & Lyerly, A. D. (2013). “Therapeutic” bed rest in pregnancy. Unethical and unsupported by data. Obstetrics and Gynecology, 121(6), 1305–1308.

    Article  PubMed  Google Scholar 

  • Meadow, W. L., Lee, G., Lin, K., & Lantos, J. D. (2004). Changes in mortality for extremely low birth weight infants in the 1990s: Implications for treatment decisions and resource Use. Pediatrics, 113(5), 1223–1229.

    Article  PubMed  Google Scholar 

  • Meadow, W. L., Reinshisel, T., & Lantos, J. D. (1996). Birt weight-specific mortality for extremely low birth weight infants vanishes by four days of life: Epidemiology and ethics in the neonatal intensive care unit. Pediatrics, 97(5), 636–643.

    CAS  PubMed  Google Scholar 

  • Merrick, J. C. (1992). Conflict, compromise and political symbolism. In A. L. Caplan, R. H. Blank & J. C. Merrick (Eds.), Compelled compassion. Government intervention in the treatment of critically ill newborns. Totowa, NJ: The Humana Press.

    Google Scholar 

  • Moro, T. T., Kavanaugh, K., Savage, T. A., Reyes, M. R., Kimura, R. E., & Bhat, R. (2011). Parent decision-making for life support decisions for extremely premature infants: From prenatal through end-of-life period. Journal of Perinatal & Neonatal Nursing, 25(1), 52–60.

    Article  Google Scholar 

  • Murphy, S., & Rosenbaum, M. (1999). Pregnant women on drugs. New Brunswick, N.J.: Rutgers University Press.

    Google Scholar 

  • Orentlicher, D. (2010). Multiple embryo transfer: Time for a policy. Hastings Center Report, 40(3), 12–13.

    Article  PubMed  Google Scholar 

  • Orfali, K., & Gordon, E. J. (2004). Autonomy gone awry: A cross cultural study of parents’ experiences in neonatal intensive care units. Theoretical Medicine and Bioethics, 25(4), 329–365.

    Article  PubMed  Google Scholar 

  • Paltrow, L. M., & Flavin, J. (2013). Arrests of and forced interventions on pregnant women in the United States 1973–2005. Implications for women’s legal status and public health. Journal of Health Policy, Politics and Law, 38(2), 293–343.

    Google Scholar 

  • Paris, J. J., Schreiber, M. D., & Moreland, M. P. (2007). Parental refusal of medical treatment for a newborn. Theoretical Medicine and Bioethics, 28(5), 427–441.

    Article  PubMed  Google Scholar 

  • Parker, L. S., & Alvarez, H. K. (2003). The legacy of the tuskegee syphilis study. In B. Jennings, J. Kahn, A. Mastroianni, & L. S. Parker (Eds.), Ethics and public health: Model curriculum (pp. 37–53). Washington, D.C.: Association of Schools of Public Health.

    Google Scholar 

  • Partridge, J. C., Robertson, K. R., Rogers, E. E., Landman, G. O., Allen, A. J., & Caughey, A. B. (2014). Resuscitation of neonates at 23 weeks gestational age: A cost-effectiveness analysis. Journal of Maternal-Fetal & Neonatal Medicine, 28(2), 121–130.

    Article  Google Scholar 

  • Pignotti, M. S., & Donzelli, G. (2008). Perinatal care at the threshold of viability: An international comparison of practical guidelines for the treatment of extremely preterm births. Pediatrics, 121(1), e193–e198.

    Article  PubMed  Google Scholar 

  • Placencia, F. X., & McCullough, L. B. (2011). The history of ethical decision making in neonatal intensive care. Journal of Intensive Care Medicine, 26(6), 368–384.

    Article  PubMed  Google Scholar 

  • President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1983). Deciding to forego life sustaining treatment. Ethical, medical and legal issues in treatment decisions. Washington D.C.: President’s Commission on Bioethics.

    Google Scholar 

  • Press, N., & Browner, C. H. (1997). Why women say yes to prenatal diagnosis. Social Science and Medicine, 45(7), 979–989.

    Article  CAS  PubMed  Google Scholar 

  • Press, N., & Browner, C. H. (1998). Characteristics of women who refuse an offer of prenatal diagnosis: Data from the California maternal serum alphafetoprotein blood test experience. American Journal of Medical Genetics, 78(5), 433–445.

    Article  CAS  PubMed  Google Scholar 

  • Raju, T. N. K., Mercer, B. M., Barfield, D. J., & Joseph, G. F. (2014). Periviable birth: Executive summary of a joint workshop by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Society for Maternal-Fetal Medicine, American Academy of Pediatrics and Americn College of Obstetricians and Gynecologists. American Journal of Obstetrics and Gynecology, 210(5), 406–417.

    Article  PubMed  Google Scholar 

  • Rebagliato, M., Cuttini, M., Broggin, L., Berbik, I., de Vonderweid, U., Hansen, G. … Units. (2000). Physicians’ attitudes and relationship with self-reported practices in 10 European countries. JAMA, 284(19), 2451–2459.

    Google Scholar 

  • Richards, S. E. (2011, August 15). In defense of IVF twins. Slate.com.

    Google Scholar 

  • Robbins, J. (2013). Beyond the suffering subject. Toward an anthropology of the good. Journal of the Royal Anthropological Institute, 19(3), 447–462.

    Article  Google Scholar 

  • Roberts, S. C. M., & Nuru-Jeter, A. (2010). Women’s perspectives on alcohol and drug use in prenatal care. Women’s Health Issues, 20(1), 193–200.

    Article  PubMed  PubMed Central  Google Scholar 

  • Roberts, S. C. M., & Nuru-Jeter, A. (2012). Universal screening for alcohol and drug use and racial disparities in child protective service reporting. Journal of Behavioral Health Services & Research, 39(1), 3–16.

    Article  Google Scholar 

  • Rogowski, J. A. (1998). Cost-effectiveness of care for very low birth weight infants. Pediatrics, 102(1), 35–43.

    Article  CAS  PubMed  Google Scholar 

  • Roth, R. (2000). Making women pay. The hidden costs of fetal rights. Ithaca: Cornell University Press.

    Google Scholar 

  • Rysavy, M. A., Li, L., Bell, E. F., Dhas, A., Hintz, S. R., Stoll, B. J. … Higgins, R. D. (2015). Between hospital variation in treatment and outcomes in extremely preterm infants. New England Journal of Medicine, 372(23), 1801–1811.

    Google Scholar 

  • Saigal, S., Rosenbaum, P. L., Feeny, D., Burrows, E., Furlong, W., Stoskopf, B. L., et al. (2000). Parental perspectives of the health status and health related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics, 105(3), 569–574.

    Google Scholar 

  • Samuels, T. A., Minkoff, H., Feldman, J., Awonuge, A., & Wilson, T. E. (2007). Obstetricians, health attorneys and court-ordered cesarean sections. Women’s Health Issues, 17(2), 107–114.

    Article  PubMed  Google Scholar 

  • Sayeed, S. A. (2005). Baby doe redux? The department of health and human services and the born-alive infants protection act of 2002: A cautionary note on normative neonatal practice. Pediatrics, 116(4), E576–E585.

    Article  PubMed  Google Scholar 

  • Schappin, R., Wijnroks, L., Venema, M. M. A. T. U., & Jongmans, M. J. (2013). Rethinking stress in parents of preterm infants: A meta-analysis. PLoS ONE, 8(2), e54992.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Schmitt, S. K., Sneed, L., & Phibbs, C. S. (2006). Costs of newborn care in California: A population based study. Pediatrics, 117(1), 154–160.

    Article  PubMed  Google Scholar 

  • Schroedel, J. R. (2000). Is the fetus a person? A comparison of policies across the fifty states. Ithaca: Cornell University Press.

    Google Scholar 

  • Sharman, M., Meert, K., & Sarnak, A. P. (2005). What influences parents’ decisions to limit or withdraw life support? Pediatric Critical Care Medicine, 6(5), 513–518.

    Article  PubMed  Google Scholar 

  • Siegel, M. (2014). The rhetoric of pregnancy. Chicago: University of Chicago Press.

    Google Scholar 

  • Sikich, K. (2005). Peeling back the layers of substance abuse during pregnancy. DePaul Journal of Health Care Law, 8(2), 369–418.

    Google Scholar 

  • Silverman, W. A. (1989). Neonatal pediatrics at the century mark. Perspectives in Biology and Medicine, 32(2), 159–169.

    Article  CAS  PubMed  Google Scholar 

  • Singh, J., Faranoff, J., Andrews, B., Caldarelli, L., Lagatta, J., & Meadow, W. (2007). Resuscitation in the gray zone of viability: Determining physician preferences and predicting outcomes. Pediatrics, 120(3), 519–526.

    Article  PubMed  Google Scholar 

  • Singh, J., Lantos, J. D., & Meadow, W. L. (2004). End-of-life after birth: Death and dying in a neonatal intensive care unit. Pediatrics, 114(6), 1620–1626.

    Article  PubMed  Google Scholar 

  • Smith, M. J. (2011). Rights vs. Liberty. Hastings Center Report, 41(1), 5.

    Article  PubMed  Google Scholar 

  • Starr, M., Chalmers, I., Clarke, M., & Oxman, A. D. (2009). The origins, evolution and future of the chochrane database of systematic reviews. International Journal of Technology Assessment in Health Care, 25(Supplement I), 182–195.

    Google Scholar 

  • Steer, P. (2005). The bioethics of preterm labor. British Journal of Obstetrics and Gynaecology, 112(Supp 1), 109–112.

    Article  PubMed  Google Scholar 

  • Steinberg, D., & Gehsham, S. (2000). State Responses to maternal drug and alcohol use: An update. Portland, ME: National Conference of State Legislatures.

    Google Scholar 

  • Stevenson, J. W. (1994). Stopping fetal abuse with no-pregnancy and drug treatment probation conditions. Santa Clara Law Review, 34(2), 295–372.

    Google Scholar 

  • Stillman, R. J., Richter, K. S., Banks, N. K., & Graham, J. R. (2009). Elective single embryo transfer: A 6-year progressive implementation of 784 single blastocyst transfers and the influence of payment method on patient choices. Fertility and Sterility, 92(6), 1895–1906.

    Article  PubMed  Google Scholar 

  • Stillman, R. J., Richter, K. S., & Jones, H. W. J. (2013). Refuting a misguided campaign against the goal of single-embryo transfer and singleton birth in assisted reproduction. Human Reproduction, 28(10), 2599–2607.

    Article  PubMed  Google Scholar 

  • Stolz, J. W., & McCormick, M. C. (1998). Restricting Access to neonatal intensive care: Effect on mortality and economic savings. Pediatrics, 101(3), 344–348.

    Article  CAS  PubMed  Google Scholar 

  • Thompson, C. (2005). The ontological choreography of reproductive technologies. Cambridge: MIT Press.

    Google Scholar 

  • Townsend, S. F. (2012). Obstetric conflict: When fetal and maternal interests are at odds. Pediatrics in Review, 32(1), 33–36.

    Article  Google Scholar 

  • Tyson, J. E. (1995). Use of unproven therapies in clinical practice and research: How can we better serve our patients and their families? Seminars in Perinatology, 19(2), 98–111.

    Article  CAS  PubMed  Google Scholar 

  • Tyson, J. E., Parkih, N. A., Langer, J., Green, C., & Higgins, R. D. (2008). Intensive Care for extreme prematurity- moving beyond gestational age. New Eng J Medicine, 358(16), 1672–1681.

    Article  CAS  Google Scholar 

  • Tyson, J. J., & Stoll, B. E. (2003). Evidence-based ethics and the care and outcome of extremely premature infants. Clinics in Perinatology, 30(2), 363–387.

    Article  PubMed  Google Scholar 

  • Tymstra, T. (2007). ‘At least we tried everything’: About binary thinking, anticipated decision regret, and the imperative character of medical technology. Journal of Psychosomatic Obstetrics and Gynecology, 28(3), 131.

    Google Scholar 

  • Verhagen, A. A. E., Janvier, A., Leuthner, S. R., Andrews, B., Lagata, J., Bos, A. F., et al. (2010). Categorizing neonatal deaths: A cross-cultural study in the United States. Canada and The Netherlands. Pediatrics, 156(1), 33–37.

    Google Scholar 

  • Vila, B. (2004). Where there is no shame, there is no honor (Ethiopian Proverb) (Letter). Pediatrics, 114(3), 897.

    Article  PubMed  Google Scholar 

  • Wade, K. (2013). Refusal of emergency cesarean section in Ireland: A relational apprach. Medical Law Review, 22(1), 1–25.

    Article  PubMed  Google Scholar 

  • Watts, J. L., & Saigal, S. (2006). Outcome of extreme prematurity: As information increases so do the dilemmas. Archives of Disease in Childhood-Fetal and Neonatal Edition, 91(3), F221–F225.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Wicks, E. (2001). The right to refuse medical treatment under the european convention on human rights. Medical Law Review, 9(1), 17–40.

    Article  CAS  PubMed  Google Scholar 

  • Zupancic, J. A. F., Kirpalani, H., Barrett, J., Stewart, S., Gafni, A., Streiner, D. … Smith, P. (2002). Characterizing doctor-parent communication in counselling for impending preterm delivery. Archives of Diseases in Childhood, Fetal Neonatal Edition, 87(2), F113–F117.

    Google Scholar 

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Bronstein, J.M. (2016). The Ethical Dimension: Moral Decision-Making About Preterm Birth. In: Preterm Birth in the United States. Springer, Cham. https://doi.org/10.1007/978-3-319-32715-0_6

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