Abstract
This chapter considers the hypothetical healthy newborn as a representation, an aspirational abstract ideal rendered through a variety of discourses. Exploring the cultural work of the hypothetical healthy newborn figure can help clarify the moral conflict at the heart of a pregnant woman's dual obligation to her own best interests and the best interest of her future child, and can help point us toward an alternative moral conception of full personhood as vitality, rather than conformity to the ideal of the healthy newborn.
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Notes
- 1.
The purpose of this paper in the development of my own project as a bioethicist is twofold: first, to develop an accurate moral rather than a medical vocabulary to discuss procreative bioethics; second, to work toward developing an argument/rationale against eugenic selection that is not anchored in divine authority but rather is conceptualized as a contribution to the common good.
- 2.
I use here terms such as procreative process, unborn person, and gestating being in order to place this explication of the hypothetical healthy newborn in the context of the parents’ imaginative, emotional, and psychological experience of the gestating child about whom they are making decisions in the present and plans for the future. Thus, I have avoided medical terms such as embryo and fetus in favor of terms that conceptualize this liminal figure as a present and future person.
- 3.
Georgina Kleege, More Than Meets the Eye: What Blindness Brings to Art (New York: Oxford University Press, 2018).
- 4.
Studies and rationales are emerging across academic and professional fields arguing that what I am calling here the arc of knowing during the procreative process constitute harm rather than benefit for women. A thorough review and discussion of this bioethical issue is beyond the scope of this paper. Instead, this paper uses the language of the humanities to explicate this arc of knowing. But the next step to follow this paper would be to make the argument that this is more harm than benefit. See, for example, Katie Stoll, “The Routinization of Prenatal Testing and the Erosion of Patient Autonomy,” The DNA Exchange, November 16, 2017, https://thednaexchange.com/2017/11/16/the-routinization-of-prenatal-testing-and-the-erosion-of-patient-autonomy/; B.A. Bernhardt et al., “Women's Experiences Receiving Abnormal Prenatal Chromosomal Microarray Testing Results,” Genetic Medicine 15, no. 2 (2013), 139–145; Silja Samerski, “Genetic Counseling and the Fiction of Choice: Taught Self-Determination As a New Technique of Social Engineering,” Signs: Journal of Women in Culture and Society 34, no. 4 (2009), 735–761; E Garcia, D R M Timmermans, and Evan Leeuwen, “Reconsidering Prenatal Screening: An Empirical Ethical Approach to Understand Moral Dilemmas as a Question of Personal Preferences,” Journal of Medical Ethics, 35 (2009), 410–414.
- 5.
Alice Dreger, One of Us: Conjoined Twins and the Future of Normal (Cambridge, MA: Harvard University Press, 2005).
- 6.
Erik Parens, “Made to Order,” Aeon, November 11, 2015, https://aeon.co/essays/can-parents-be-trusted-with-gene-editing-technology
- 7.
Consider here Emmanuel Levinas and Maurice Merleau- Ponty on the importance of sensory knowledge in both the accordance and development of personhood.
- 8.
See Victor Turner, “Betwixt and Between: The Liminal Period in Rites de Passage”, in The Forest of Symbols (Ithaca, NY: Cornell University Press, 1967). The disabled anthropologist Robert Murphy uses the theory of liminality to explain the experience of disability in his self-ethnography; see Robert Murphy, The Body Silent: The Different World of the Disabled (New York: Norton, 1990).
- 9.
Anthropologists tend to explicate liminal rituals such as rites of initiation or passage from one stage of life to another. It is more difficult for us to identify liminal anxiety and our cultural responses to it in our own cultural structures. Because the procreation process for us now is so highly structured through the truth discourses of medicine, empiricism, and authority, it may be hard for us to recognize the cultural components of procreation as a system of liminal experiences and cultural rituals.
- 10.
Aimi Hamraie, Building Access: Universal Design and the Politics of Disability (Minneapolis: University of Minnesota Press, 2017).
- 11.
The language of research and studies in the field of genetic counseling regularly use diagnostic and prognostic terms such as issue, something wrong, abnormal, blindsided, no-brainer, anomaly, severity, outcomes, disorder, results, findings, risk, health, deletion, and development.
- 12.
The term “toxic knowledge” comes from B.A. Bernhardt et al., “Women's Experiences Receiving Abnormal Prenatal Chromosomal Microarray Testing Results,” Genetic Medicine 15, no. 2 (2013), 139–145. See also Allison Werner-Lin.
- 13.
The human conditions that challenge this equation of moral personhood and human singleton status are the universal, and thus common, stage of human pregnancy and the very rare human condition of conjoinment. For more on singleton status, see Alice Dreger, One of Us: Conjoined Twins and the Future of Normal (Cambridge, MA: Harvard University Press, 2005).
- 14.
Again, I will not take up here the moral status of the gestating being, in part because it is the legal and medical status of that being that dictates what can and cannot be done to it in the current medical and legal context of pregnancy.
- 15.
An example of this reconceptualization that is beyond the scope of this particular paper, but may serve as an example of using the vitality threshold rather than the normalcy threshold is a recent comment by a mother of the child selected as the 2018 Gerber baby. Lucas Warren, a 1-year-old from Dalton, Georgia who is the first child with Down syndrome to be named a Gerber baby since the contest's start in 2010. “He may have Down syndrome, but he's always Lucas first,” said his mother. See Terri Peters, “Meet the First Gerber Baby with Down Syndrome; His Name is Lucas!”, Today.com, February 7, 2018,
https://www.today.com/parents/2018-gerber-baby-first-gerber-baby-down-syndrome-t122258.
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Garland-Thomson, R. (2022). The Hypothetical Healthy Newborn. In: Allyse, M.A., Michie, M. (eds) Born Well: Prenatal Genetics and the Future of Having Children. The International Library of Bioethics, vol 88. Springer, Cham. https://doi.org/10.1007/978-3-030-82536-2_6
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