Bioethicist Leon Kass has said, “it sometimes seems as though our views of the meaning of our humanity have been so transformed by the technological approach to the world that we may be in danger of forgetting what we have to lose, humanly speaking.”[1] Bioethics as a discipline often takes a reactive form in front of biomedical questions and problems, yielding to emergencies and the need for an immediate “yes or no” answer concerning permissibility in the operating room or laboratory. In Kass’s view, this is one of the decisive problems inherent to American bioethics as it has developed since the 1970s. He writes, “[bioethics] is quick to notice dangers to life, threats to freedom, and risks of discrimination or exploitation,” but “slow to think about the need to uphold human dignity and the many ways of doing and feeling and being in the world that make human life rich, deep, and fulfilling.”[2] Our society’s ‘slowness’ in thinking is increasingly an inability to think deeply at all, not only about our humanity, but about the meaning of things in general.[3]
In an effort to address this growing thoughtlessness, Kass’s point of departure as a bioethicist has been to inquire into the nature of our humanness through the means of literature—“To enlarge our vision and deepen our understanding.”[4] He explains that the realities we are forced to grapple with in bioethical issues concern the “core of our humanity:” birth, health (wellness and flourishing), illness, suffering, and death, but also our relation to others: to children, parents, strangers, even our relation to the world (to nature, the environment). Metaphysical realities (e.g., freedom, goodness, wholeness, happiness, and love) are also implicated in bioethical issues. Thus, bioethics is about more than just isolated decision-making, for it fundamentally concerns the very nature of reality: the truth of life and death, and of being human. We need to cultivate a bioethics that is rooted in an adequate theological anthropology, one that understands the condition of the human person and his relation to God and the world in light of Creation and Redemption—unlike the utilitarian bioethics currently prevalent, which subtly but malignantly promotes utility and self-determination at the expense of the sanctity of the created order.
This essay explores the idea of man and of being itself—the anthropology and the ontology—that is implicit in what I call the “spirit” that lies within our desire to apply biotechnology in or on human life. This “spirit”—an underlying, implicit desire or motivation—is a desire to prevent instances of suffering in the human condition via elimination; to prevent, for instance, disease from occurring in human life at the very root. I think there is a difference between the desire to alleviate suffering where it is found and the desire to prevent or avoid suffering through eliminating the very possibility for its occurrence. It is the latter desire that I argue is implicit in the spirit of biotechnology. Although this drive to eliminate suffering may not be overtly held in every individual use of biotechnology (i.e., one’s desire may indeed be to alleviate pain), the drive to eliminate suffering is the impetus latent within biotechnology itself. That is, in using biotechnology to eliminate conditions of disease by preventing the birth of children with genetic disorders, we are at the same time tacitly attempting to eliminate the condition of suffering itself. And in doing so, I argue that we are obscuring a truth about the human condition, making it more difficult to see that control over our suffering bodies is not ontologically original to man’s being and acting. Ultimately, I argue that this spirit of biotechnology—the desire to eliminate suffering—obscures who and what man is ontologically.
The increased demand for biotechnology is advocated for in terms of wanting to relieve or cure debilitating diseases that cause immense physical suffering and untimely death. For instance, Steven Pinker has famously argued that bioethics should “get out of the way” of biotechnological research because “panic about speculative harms in the distant future” could hinder the discovery of life-saving biotechnological cures: “Even a one-year delay in implementing an effective treatment could spell death, suffering, or disability for millions of people.”[5] Author and physician Jerome Groopman similarly argues that biotechnological research, such as that undertaken in therapeutic cloning, “may one day provide treatments for scores of currently incurable diseases, including juvenile diabetes, Parkinson’s, Alzheimer’s, and spinal-cord paralysis.”[6] What is new in this spirit of biotechnology is not the desire to relieve, cure, or treat disease, but rather the implicit desire or push to do so by eliminating the disease itself, to thereby eradicate such instances of suffering altogether. It is this that I take to be the spirit of biotechnology, the drive to take control of our nature precisely in the instances where nature exceeds our control: in death, in severe illness, and in life’s origin.
Consider first the instance of death. Modern medicine’s relationship with the reality of death bears an internal division: on the one hand, death is to be prevented at all costs—even conquered—and on the other, it is something inevitable to be accepted and prepared for. Bioethics pioneer Daniel Callahan calls this internal division a “profound schism” at the very heart of medicine, between the palliative care movement and the utopian “research imperative” that “implicitly [aims] to conquer death one disease at a time.”[7] Life-saving medical advancements in the latter half of the twentieth century, such as kidney dialysis and vital organ transplantation, made it such that medicine in the 1970s had to “learn” to not resuscitate, because the prevailing attitude towards death was ‘prevent at all costs.’[8] The view of death as something to be controlled is still with us today, as Atul Gawande has shown, in the way that aging and dying are treated as drawn out medical processes ‘managed’ between hospitals and health care professionals.[9] Most radically, physician-assisted suicide enables one to end life on one’s own terms, to “end [the] dying process if it becomes unbearable,” as twenty-nine year old Brittney Maynard described her decision to end her own life by a lethal medical prescription.[10]
Desire for control over situations of unbearable suffering is also at play when it comes to heritable genetic disease. The advent of prenatal screening, coupled with the rise of medical genetics, has changed the experience of pregnancy tout court, as decisions over selective abortion or—with the further advent of reproductive technologies and pre-implantation genetic diagnosis—decisions over embryo selection, mean that now genetic disease and premature death may be prevented through termination of the fetus or with selective embryo transfer.[11] The occurrence of a debilitating, life-threatening genetic condition is, of course, something no parent desires for their child. Since the vast majority of genetic diseases occur in families with no history of such conditions, the overwhelming consensus from physicians who advocate for genetic screening is that every couple planning to have children should be equipped with genetic knowledge, as it is the only way to make an informed decision before conceiving a child.[12] Yet, as one journalist notes, the “routine, broadly targeted prenatal genetic testing” physicians are calling for “means that having a child with a major genetic disease or disability will largely cease to be a surprise and instead become a deliberate choice.”[13] The final frontier of control over genetic disease is being broached with the push to make germline editing safe for therapeutic use, as CRISPR-pioneer Jennifer Doudna explains, “to eliminate the prospect of disease in a child who [has not] yet been born or even conceived.”[14]
Our power to intervene in the human germline is a downstream result of our power over the origin of life itself, pointing back to when Robert Edwards and Patrick Steptoe successfully reproduced human procreation in the form of “simple laboratory procedures.”[15] The possibility of in vitro fertilization is arguably the primary instance where human control over nature is exhibited, and is a paradigmatic representation of the spirit of biotechnology as I am describing it. Whereas human life in its moment of conception is by nature a reality that exceeds our direct control, for it occurs hidden in a woman’s womb, it is now subject to direct control, down to the selection of sex or eye color. The intent of Edwards and Steptoe was to alleviate the pain of infertility for couples who could not conceive naturally. Their discovery has been hailed internationally for helping millions of infertile couples have “the babies they so desperately wanted.”[16] Yet this success does not come to us without inherent implications. The ability to overcome infertility through the assistance of laboratory techniques is the flip side of the same coin of control over reproduction exhibited through the means of chemical birth control and abortion. In the case of infertility, it is the suffering from the absence of a desired biological child that IVF has the potential to assuage, but only at the behest of the assumption that life is under our dominion.
This spirit of control—as seen in wanting to have or reject death at will, wanting to control the fate of a child through embryonic selection or germline editing, or wanting a child of one’s own—has at the same time the logic of rejecting suffering, or of trying to prevent or shut down its occurrence. While this may or may not describe the personal intention behind one’s use of biotechnology, it is rather the underlying or implicit “spirit” of biotechnology itself, a Promethean desire for control—over our bodies, our death, and our very nature—that strives to construct a life free of suffering. But what is wrong with this Promethean desire? What is amiss in our use of biotechnology for what we envision to be good purposes? As the title of this section states, this spirit of biotechnology operates on the assumption that the human being is fundamentally homo faber: man as constructor or engineer of reality, or the “fabricator of the world,” as Hannah Arendt explains, conducting himself as “lord and master of the whole earth” as if he were God.[17] The reason why the spirit of biotechnology poses a concern is twofold. First, the suffering that we seek to control and eradicate is simultaneously eliminating our ability to perceive the truth of the human condition, the very givenness of our life, health, and death. Second: it perpetuates the lie that control, understood as power over nature, is ontologically original to human being and doing.
The desire to eradicate suffering through biotechnology belies a view of suffering as a problem to be solved, and as immediately as possible. There is no denying that suffering is an evil. It is a lack or privation of the good that ought to be there. It is an inherent part of the human condition only as a result of original sin. However, if humanity’s conception of suffering is only as something to be fixed and/or eliminated, then the ability to allow the human experience of suffering to ‘speak’ is truncated. The “groaning in labour pains” (Rom 8:22, NRSVCE) of all of creation, of which human suffering is the epitome, is not a senseless cry. We suffer because we experience an injustice, imperfection, wound, or violence, and in this way, suffering is like a beacon that alerts us to a more comprehensive, transcendent horizon—indeed, that of “the adoption to sonship, the redemption of our bodies” (Rom 8:23). But insofar as our use of biotechnology proceeds to eliminate instances of suffering, its meaning as a human experience will continue to be stifled. What is the “meaning” of human suffering that is at risk of being eclipsed?
In suffering, we are not in control. Something is happening to us that we did not choose or ask for, and it is an affliction that can bring pain, vulnerability, and humiliation. Suffering is not just something that happens to the body, but to our very person, touching emotional, psychological, spiritual, and existential dimensions of our being. The human experience of suffering contains the inherent possibility of opening us in attentiveness toward a more adequate anthropology, that is, toward a deeper and truer understanding of the human condition, as Ruth Ashfield and Jose Granados have sought to show in light of the theological thought of Saint John Paul II.[18] Simply put, suffering reminds us of our helplessness, which is further an indication of the ontological structure of the human being: dependent on God because we were made by Him and for Him.[19] Suffering, as a universal human experience, is a window illuminating the meaning of the human condition of dependence (on others, and on God) and of gift (our “two-fold” given-ness in our conception and ultimately in creation ex nihilo).Conditions of illness, disease, or disability are profound signifiers of the dependency and relation that is ontologically original to all human beings. Theologian Joseph Ratzinger explains that the essence of human freedom is contained in the image of the child in his mother’s womb. In other words, every autonomous, independent human being is, ontologically, a child; our being bears an essentially filial character. The child’s interwoven dependence upon his mother while in her womb does not “eliminate the otherness of [his or her] being or authorize us to dispute its distinct selfhood,” rather, it is precisely this example that brings out the basic figure of human freedom: that to be oneself is “to be radically from and through another.”[20] The witness of one who is suffering is capable of dramatically reminding us of this truth, too often taken for granted, that we are not our own, and that we both exist in and depend upon our relation to others and ultimately to God, the Author of life and death. The move “to end the needless suffering of preventable genetic disease” means we also eliminate instances of profound and poignant witness to the truth that neither life nor death is in our hands.[21] Stories of parents and families who experience life with a diseased or disabled child offer us a unique perspective of the condition of suffering that is not extraneous to being human in a fallen world, and a powerful reminder that we ought to say: “for us, every day is a gift.”[22] In an address to sick and disabled youth, John Paul II has said, “In sickness we better understand that our existence is gratuitous and that health is an immense gift of God.”[23]
Suffering is also demanding. It calls others to exhibit care, compassion, and love. Here we reach the most mysterious yet powerful meaning of the condition of suffering: its very presence in our experience has the ability “to unleash love in the human person,” as John Paul II has said.[24] The tragedy of our modern biotechnology is, for instance, that the very possibility of preventing children afflicted with malformation or disease from being brought into the world means that the examples of parents who do accept to give birth and care for the afflicted children entrusted to them will be increasingly incomprehensible in the eyes of the world. How can the example of a mother who wants to accompany her anencephalic daughter in the womb to the moment of her natural death be made sense of in a mentality that thinks only in terms of cost efficiency and utility?[25] We increasingly risk having our relation to human life in the face of suffering be one of “programming, controlling, and dominating,” instead of “experiences demanding to be ‘lived,’” and ultimately, experiences in which we can give of ourselves in love and sacrifice for the one who suffers.[26]
Lastly, the suffering that arises from dying and death in particular is a call to return to one’s origin of having been given. A recurring theme in Atul Gawande’s book Being Mortal: Medicine and What Matters in the End is that American society does not know what to make of human finitude, and so there is no acceptance of or reconciliation with our mortality. Ill-health is something to be constantly fixed; life is to be prolonged at all costs; and death is to be avoided entirely.[27] Wendell Berry notes that when “we no longer imagine death as an appropriate end or as a welcome deliverance from pain or grief or weariness . . . [but] as a punishment for growing old,” we are radically in need of an education toward the totality of human life, which includes death as its natural conclusion.[28] At the end of life—as in other conditions of suffering—we are brought back to a total dependency, vulnerability, and a child-like need for others that should only be responded to with tenderness.[29]
A basic truth of our existence is that we were given by God as a gift unto ourselves. This means that our human condition is ontologically receptive. To understand this is also to understand that man’s action—his control, his making, his doing—is thus not boundless, but given to him within an already-existent form or order. Although man is created for his own sake, is master of his own doings (sui iuris), and has a dominion over the rest of reality given to him by God (cf. Genesis 1:28), it is always as creature that he has received his existence and the task of dominion over the rest of created reality. And as creature, this means that man is not God, not his own origin or maker. So, man indeed has ‘control’ over himself and his actions, but its exertion in the form of a ‘self-making’ or engineering of fate and nature is contrary to man’s creatureliness (his filiality) and is objectively dehumanizing. Man’s making is “always-anteriorly [a] being-made-by-God.”[30] When this is not recognized and/or explicitly denied, man posits himself as God.
The spirit of biotechnology operates under the guise of control, often accompanied by a delusion of promise.[31] Both are deceptive because they hold out to humanity what is not essentially ours: the ability to be our own origin, our own maker, our own God. In every human act of sin, there is a recapitulation of original sin: wanting to be God without wanting to be a creature, and this is a rejection of our filiality. Joseph Ratzinger notes how our recognition of human dignity is wrapped up in our recognition of God:
the ultimate root of hatred for human life, of all attacks on human life, is the loss of God. Where God disappears the absolute dignity of human life disappears as well. . . . Only [man’s] divine dimension guarantees the full dignity of the human person. . . . Only in this way does the value of the weak, of the disabled, of the non-productive, or the incurably ill become apparent; only in this way can we relearn and rediscover, too, the value of suffering: the greatest lesson on human dignity always remains the cross of Christ, our salvation has its origin not in what the Son of God did, but in his suffering, and whoever does not know how to suffer does not know how to live.[32]
The spirit of biotechnology inherently entails a despotism exerted by humanity over all of reality, but especially the life of the human person in our weakest and most vulnerable states: at the dawn of our existence, when we are suffering from illness, and at the end of our lives. The experiences of suffering that we seek to eradicate through biotechnology, when paid attention to, reveal fundamental anthropological truths about our humanness.
[1] Leon Kass, Being Human: Core Readings in the Humanities (New York: W. W. Norton, 2004), xx.
[2] Ibid.
[3] Hannah Arendt’s description of the thoughtlessness of the twentieth century resonates with the societies depicted in several dystopian novels preceding her words, which are often evoked in bioethical discourse—from Ray Bradbury’s Fahrenheit 451 to Aldous Huxley’s Brave New World and George Orwell’s 1984. See Hannah Arendt, The Human Condition (Chicago: University of Chicago Press, 1958), 3.
[4] Kass, Being Human, xx.
[5] Steven Pinker, “The Moral Imperative for Bioethics,” The Boston Globe, August 1, 2015.
[6] Jerome Groopman, “Science Fiction,” The New Yorker, February 4, 2002, https://www.newyorker.com/magazine/2002/02/04/science-fiction.
[7] Daniel Callahan, “Death, Mourning, and Medical Progress,” Perspectives in Biology and Medicine, 52, No. 1, (Winter 2009): 103–115.
[8] See Haider Warraich, Modern Death: How Medicine Changed the End of Life, (New York: St. Martin’s Press, 2017): 57-91.
[9] Gawande writes: “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers” in Being Mortal: Medicine and What Matters in the End (New York: Metropolitan Books, 2014), 9. Consider that John Paul II called for a reconsideration of the role of the modern hospital in 1995, writing that “[they] should not merely be institutions where care is provided for the sick or the dying. Above all they should be places where suffering, pain and death are acknowledged and understood in their human and specifically Christian meaning. This must be especially evident and effective in institutes staffed by Religious or in any way connected with the Church” in Evangelium Vitae (Encyclical on the Value and Inviolability of Human Life), 1995, no. 88.
[10] Brittney Maynard, “My right to death with dignity at 29,” CNN, November 2, 2014. http://www.cnn.com/2014/10/07/opinion/maynard-assisted-suicide-cancer-dignity/
[11] The sea-change in the experience and meaning of pregnancy due to prenatal screening was documented in 1986 by sociologist Barbara Katz Rothman in her book: The Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood (New York: W. W. Norton, 1993).
[12] This is the premise behind Counsyl (2010) and GenePeeks (2014), two genetic technology companies whose mission is to enable parents to “protect their future child from serious diseases,” and also help “end the needless suffering of preventable genetic disease” for future generations. Counsyl’s Press Release cited an endorsement by Dr. Steven Ory, Past President of the American Society of Reproductive Medicine, who stated: “The vast majority of babies born with genetic disease have no family history. . . . That’s why it’s so critically important for all parents to get the Universal Genetic Test before pregnancy,” cited in: Daniel Macarthur, “Personal Genomics is Getting Serious: Counsyl Emerging from Stealth Mode,” Wired, January 22, 2010. http://www.wired.com/2010/01/personal-genomics-is-getting-serious-counsyl-emerging-from-stealth-mode/. See also: “Counsyl Test to Prevent Diseases Like Those in ‘Extraordinary Measures’ Now at 100+ Medical Centers,” Business Wire, January 22, 2010, https://www.businesswire.com/news/home/20100122005277/en/Counsyl-Test-Prevent-Diseases-Extraordinary-Measures-100.
[13] White, Michael. “Next-generation prenatal tests are turning fate into choice,” Pacific Standard, October 9, 2015, https://psmag.com/environment/gattaca-is-here.
[14] Jennifer A. Doudna and Samuel H. Sternberg, A Crack in Creation: Gene Editing and the Unthinkable Power to Control Evolution (Boston: Houghton Mifflin Harcourt, 2017), 188.
[15] Ibid., 190. For a historical rendering and examination of the ramifications of assisted reproduction, see Robin Marantz Henig, Pandora’s Baby: How the First Test Tube Babies Sparked the Reproductive Revolution (Boston: Houghton Mifflin, 2004).
[16] Andrew Steptoe, “Biology: Changing the world—a tribute to Patrick Steptoe, Robert Edwards and Jean Purdy” Human Fertility 18, no. 4 (2015): 232.
[17] Arendt, The Human Condition, 139. For an incisive explanation and critique of the full implications of the view that man is fundamentally homo faber, see David L. Schindler “The Meaning of the Human in a Technological Age: Homo Faber, Homo Sapiens, Homo Amans” Communio 26, no. 1 (1999) and Michael Hanby “Homo Faber and/or Homo Adorans: On the Place of Human Making in a Sacramental Cosmos” Communio 38, no. 2 (2011).
[18] See Ruth Ashfield, “Meeting Suffering,” Humanum Review (Fall 2014), and José Granados, “Toward a Theology of the Suffering Body,” Communio 33, no. 4 (2006): https://www.communio-icr.com/files/GranadosFormat.pdf.
[19] Luigi Giussani describes “expectation is the very structure of our nature, it is the essence of our soul. It is not something calculated: it is given. For the promise is at the origin, from the very origin of our creation. He who has made man has also made him as ‘promise.’ Structurally man waits; structurally he is a beggar; structurally life is promise,” (emphasis original), The Religious Sense, trans. John Zucchi (Montreal: McGill-Queen’s University Press, 1997): 54.
[20] Joseph Ratzinger, “Truth and Freedom,” Communio 23, no. 1 (1996): 27.
[21] Cited in Counsyl Mission Statement. For a profound explanation of the gift of human life and its eternal source see Evangelium Vitae.
[22] Stephanie Shapiro, “Genetic Disease: Mother Hopes for Cure for Dying Children,” Vital Signs, CNN, December 1, 2009, http://www.cnn.com/2009/HEALTH/11/26/mitochondrial.disease.genes/index.html?eref. See also the story of Eliot, a boy born with Trisomy 18 (Edward’s Syndrome) who lived for only 99 days, depicted through a beautiful and poignant video his parents made that has reached over 1 million viewers: http://www.everylifecounts.ie/stories/eliot-mooney/.
[23] John Paul II, “Address of His Holiness John Paul II to the Sick and Disabled” (Address, Fourth World Youth Day, Santiago de Compostela, Spain, August 19, 1989), https://w2.vatican.va/content/john-paul-ii/en/speeches/1989/august/documents/hf_jp_spe_19890819_invalidi-santiago.html.
[24] John Paul II, Salvifici Dolores, Apostolic Letter (1984), no. 29, http://w2.vatican.va/content/john-paul-ii/en/apost_letters/1984/documents/hf_jp-ii_apl_11021984_salvifici-doloris.html (emphasis in the original).
[25] I am thinking of the witness of parents who accept the life of children diagnosed with disease or impairment in utero, such as the story of Chiara Corbella Petrillo’s children, as told in Chiara Corbella Petrillo: A Witness to Joy, Trans. Charlotte Fasi, (Manchester: Sophia Institute Press, 2015), in the face of a cultural attitude represented in the words of Dr. Pasquale Patrizio, Director of the Yale Fertility Center, endorsing Counsyl’s genetic screening tests: ”A child stricken by preventable genetic disease often dies in infancy and costs the bereaved parents millions in medical bills. A five minute saliva test that prevents this is a money saver, a time saver, and most importantly a life saver; it really is a no-brainer.”
[26] Evangelium Vitae, No. 22.
[27] Gawande writes at length about the need for healthcare providers to have pointed but sensitive conversations with their patients about death and dying, especially where a prognosis may be terminal. He states that the words a physician uses matters, making the difference between a patient who is given false hope, and one who sees that they are given an opportunity to focus on what is most important to them in facing dying, for instance: by deciding to not undergo a risky surgery that might leave them unconscious and dependent on life support, and rather to enter hospice care, where they can receive the essentials of care, comfort, assistance, companionship, love, and a sense of home. See Being Mortal, Chapter 6: “Letting Go.”
[28] Wendell Berry, “Quantity vs. Form” in The Way of Ignorance and Other Essays (Emeryville, CA: Shoemaker & Hoard, 2005), 85.
[29] Ruth Ashfield, “The Gift of the Dying Person,” Communio 39, no. 3 (2012): 381. The 2001 film Wit, starring Emma Thomson, is an excellent exploration of one’s response in front of a dying person.
[30] David L. Schindler, “The Meaning of the Human in a Technological Age: Homo Faber, Homo Sapiens, Homo Amans,” Communio 26, no. 1 (1999): 89.
[31] This claim about biotechnology is part of a much larger critique of the enterprise of modern technology as a whole, which we cannot undertake in this essay. The difference between modern and ancient technology (as well as the related difference between modern man and medieval man) has been articulated, inter alia, by Hans Jonas, Philosophical Essays: From Ancient Creed to Technological Man (New York: Atropos Press, 2010), 46–82; Martin Heidegger, The Question Concerning Technology and Other Essays (New York: Harper Perennial Modern Classics, 2013), 3–35; George Grant, Technology & Justice (Toronto: House of Anansi Press Limited, 1986), 11–34; and Romano Guardini, Letters from Lake Como: Explorations in Technology and the Human Race, trans. Geoffrey W. Bromiley (Grand Rapids: Eerdmans, 1994).
[32] Joseph Ratzinger, “The Problem of Threats to Human Life,” (Address, Consistory of Cardinals, April 4, 1991), V.2.
Julia Bolzon, “The Spirit of Biotechnology: Eliminating the Condition of Suffering, Eliminating the Meaning of Gift,” Dignitas 25, no. 3 (2018): 3–7.
