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  • Bioethicists Are More Like Bricoleurs than Engineers:Reflections on Fredrik Svenaeus' Phenomenological Bioethics
A Review of Fredrik Svenaeus, Phenomenological Bioethics: Medical Technologies, Human Suffering, and the Meaning of Being Alive, Routledge, 2017.

In America in the 1960s, ethics was out of fashion. Scientists tended to think it was as wooly and "ideological" as religion, and many philosophers agreed. But advances in the biosciences and biotechnologies made the need for ethical reflection hard to ignore. Ethics needed what today we would call rebranding.

The new field devoted to questions arising with advances in the biosciences and biotechnologies would be called "bioethics." As theologian Warren Reich put it when reflecting back on the birth of bioethics in the late 1960s,

The field of bioethics started with the word bioethics because the word is so suggestive and so powerful; it suggests a new focus, a new bringing together of disciplines in a new way with a new forum that tended to neutralize the ideologic slant that people associated with the word ethics.

Different from its fuddy-duddy precursor, bioethics would be methodical and useful, resembling the technoscientific enterprise to which it would offer advice. New bioethical experts would methodically apply their principles to problems and they would produce advice as solid as any engineer's. [End Page 479]

In his valuable new book, the Swedish philosopher Fredrik Svenaeus seeks to offer a "richer" and "thicker" alternative to that Anglo–American tradition of bioethics—an alternative that has its roots in the European, specifically phenomenological tradition of philosophy. I hasten to add: Svenaeus is well aware that, in fact, Anglo–Americans can take a fair amount of credit for approaches to bioethics that have what he calls "phenomenological heritages" (6)—namely, feminist bioethics, narrative bioethics, and the ethics of care—but it is the contrast between the Anglo–American and phenomenological traditions that he uses to frame his book, and it is the one I will accept to make my comments.

Basically, whereas I find his elucidation of the conceptual tools in the phenomenological tradition to be quite helpful, I cannot say the same about his absorption with that old picture of the bioethicist as engineer. As someone who has worked at a bioethics research institute for more than two decades, it seems to me that whether we are more comfortable in the Anglo–American or phenomenological tradition, bioethicists are more like bricoleurs than engineers. With the term bricoleur, I mean to conjure the figure described by Claude Levi-Strauss—someone like what in English we call a handyman or "Jack of all trades." Imagine someone roaming the streets of a 19th-century village, pulling a cart filled with the tools and materials they have scavenged on their meanderings across the countryside. When someone has a problem (perhaps a wall has caved in), they hail the bricoleur, who uses the tools in their cart, to respond as best they can. Their response is not as grand or long-lasting as a building engineer's, but it provides temporary shelter from the cold.

MARVELOUS TOOLS IN THE PHENOMENOLOGICAL TRADITION

As Svenaeus observes, one of the striking differences between the Anglo–American and phenomenological traditions is their different relationships to modern natural science and to the technologies it undergirds. At the risk of oversimplification: whereas scholars from the Anglo–American tradition have tended toward enthusiasm about modern natural science and technology, scholars from the phenomenological tradition have tended toward criticism. The phenomenological tradition does, after all, attempt to bracket the attitude of the natural sciences. It seeks to understand what it is like to have experience rather than to explain the mechanisms that give rise to experience.

As Svenaeus also observes, the phenomenological tradition can counterbalance the Anglo–American tradition's tendency to view science [End Page 480] as "value free." That is, it can be especially helpful in noticing that modern science grows out of a particular worldview, which rejects an earlier worldview. Here I of course refer to Francis Bacon's and Rene Descartes' explicit rejection of the view of the study of nature found in Aristotle.

One of the primary aims of those founders of modern natural science was to get over the Aristotelian preoccupation with the purposes or intentions of organisms—and over the Aristotelian commitment to contemplating the whole of which those organisms were a part. Instead of contemplating the purposes of organisms, Bacon and Descartes would stick to explaining the machinery that gave rise to the experience of having a purpose. Instead of abstract reflection, they would pursue the concrete business of transforming the world. Specifically, they would use their newfound knowledge to reduce, if not eliminate, human suffering. The new natural philosophy would enable human beings to become, in Descartes' famous phrase, "the masters and possessors of nature."

One of the wonderful things about the phenomenological tradition is that it reclaims some features of Aristotle's natural philosophy that Bacon and Descartes sought to extirpate. Whereas, for example, one of the ideas native to the Anglo–American tradition is that human beings ought to master and control themselves and the rest of nature, one of the ideas—or "bioethical tools"—native to the phenomenological tradition is that human beings ought to learn to contemplate the world as it "unfolds." They ought to "let it be."

Along similar lines, the phenomenological tradition allows for the idea that suffering can be meaningful—an opportunity to learn something about oneself and the world. Especially in that strand of the phenomenological tradition that Svenaeus calls "the hermeneutics of medicine," the focus is on understanding what it is like to suffer—on what happens when disease alienates us from ourselves, making us no longer at home in our own bodies. The phenomenological tradition emphasizes the way in which the physician is called upon to respond to the suffering of others by engaging them in "empathic dialogue," in which physicians and patients share the work of finding meaning and making a coherent narrative. That idea stands in stark contrast to the Anglo–American one, where suffering and death are taken to be self-evidently meaningless enemies.

As Svenaeus helpfully elaborates, in the phenomenological tradition, we find a view of "technology" that offers a useful complement to the one found in Bacon and Descartes. Whereas in the Anglo–American tradition, technology is something we use to advance whatever purposes we choose; [End Page 481] in the phenomenological tradition that Svenaeus describes, technology is not a thing, but an "enframing worldview," a way of revealing the world. Specifically, technology is a way of revealing the world so that it appears to us as standing in reserve, as a resource for us to do with whatever we want. As Svenaeus puts it, insofar as technology is a way of revealing the world to us, it shapes "our views on what is worth pursuing in the first place" (77). For someone living in America, it is hard to exaggerate how unfamiliar, and thus how profoundly important that phenomenological insight—or "tool"—is. It can help us see technoscience as more complicated than just what is left over once we have stripped away the obscure commitments that afflicted Aristotle.

So, in a word, the phenomenological tradition gives pride of place to conceptual tools that are too often missing from bioethical discussions in the United States—from the idea of "letting be," to the idea that suffering can have meaning, to the idea that technology shapes our purposes as much as we use technology to achieve our purposes. And insofar as that is the case, Svenaeus is right to suggest that using the tools native to the phenomenological tradition could help to make for a "richer" and "thicker" bioethics.

THE TOOLS HE IS—AND ISN'T—USING TO ANALYZE SELECTIVE ABORTION

Whereas Svenaeus uses his first five chapters to describe tools of the sort I have mentioned, he uses the last two chapters of Phenomenological Bioethics to show how the phenomenologist's tools can be applied to two sorts of bioethical problem. I won't speak directly to the last chapter, where he considers harvesting organs from people who are brain-dead, though my reservations are pertinent there, too. Rather, I want to focus on his penultimate chapter, specifically, where he offers what he calls a phenomenological analysis of prenatal genetic testing and selective abortion—i.e., abortions based on finding that a fetus carries a disabling trait.

Though Svenaeus' analysis of human flourishing deploys concepts native to the phenomenological tradition, there is a way in which his analysis is actually not as "phenomenological" as it could be. Specifically, he does not attend carefully to what it is like to live with a disability, even though many phenomenologists and fellow travelers in disability studies do just that and discover that—as one of the founders of disability studies Rosemarie Garland-Thomson puts it—people can flourish in all sorts of bodies (Garland-Thomson, forthcoming). [End Page 482]

It's not that Svenaeus is unaware of the disability studies literature. He nods to it when he speaks of the good lives that people with Down syndrome can have. Had he, however, taken its insights more seriously, he would not, for example, have used the word defects the way he does, as when he writes about the immorality of failing to terminate some pregnancies:

To knowingly give birth to a child with bodily defects that will lead to severe suffering and/or a radically shortened life, as is the case in disorders such as anencephaly, Edwards syndrome (Trisomy 18), muscular dystrophy, cystic fibrosis, or Tay-Sachs disease appears irresponsible and immoral, at least if the pregnancy could have been terminated when the fetus was still in a non-viable, or, better, prequickening stage.

(114)

I do not deny that some disabling traits are hard to conceive of as other than "defects," in the sense that they preclude human flourishing, on virtually any account of flourishing. Anencephaly is one of those. And I am eager to acknowledge that some disabling traits can, as Eva Kittay has suggested, make the prospects of flourishing more precarious (Kittay, forthcoming). But more precarious is not impossible. As Kittay explains, her daughter Sesha, who lives with what are usually referred to as "profound physical and cognitive disabilities," does indeed flourish in her own way—listening to music, taking in new sights, being in loving relation with her friends, caretakers, and family. Failing to notice the ways in which someone like Sesha or someone with cystic fibrosis—which Svenaeus discusses—can flourish, is to fail to live up to the phenomenological ideal of attending to what it is like for someone to be who they are.

Moreover, when Svenaeus offers what he calls his phenomenological analysis of why it is immoral not to abort fetuses with "defects," he in fact relies on the conception of persons that is defended by Anglo–American philosophers such as David DeGrazia, whom Svenaeus cites multiple times. On that conception, full persons are "creatures possessing self-consciousness, language, memory, and an ability to plan their actions" (102). It does seem to me to be a profound problem for his analysis, that according to it, Kittay's daughter Sesha does not count as a full person. But for now, I will simply emphasize that in this analysis that he calls phenomenological, he is plainly using what I take to be a blunt tool from the Anglo–American tradition.

And, again, it is unfortunate that Svenaeus does not use tools in the phenomenological tradition that are so helpful in battling the widespread assumption that people cannot flourish in all sorts of bodies. One such [End Page 483] insight is found in Merleau-Ponty's Phenomenology of Perception, where he observes that "For myself I am neither jealous, nor inquisitive, nor hunchbacked nor a civil servant . . ." (cited in Reynolds 2018a). That is, how we are for ourselves and how we are for others are not the same. It may seem to you commonsensical that my hunchback, or my cystic fibrosis, or my blindness compromises my flourishing, but you can be wrong.

The need for another tool from the phenomenological tradition can be glimpsed in the language that Svenaeus uses when he explains that the moral responsibility to avoid having children with disabling traits does not entail a responsibility to produce children with so-called desirable traits: "The responsibility to avoid having children that we know will have a considerably more painful and alienated life than normal is not a responsibility to have children with genes that we think will make them considerably happier, with greater flourishing than normal" (117, emphasis added).

That sentence commits what phenomenologist Joel Michael Reynolds calls the ableist conflation: it conflates the notion of having a disability and the notion of being in pain (Reynolds 2018b). Having a disability can entail pain, but it usually does not, just as having a disability can entail alienation, but usually does not. As other phenomenologists have observed, disabilities can "disappear" for people with disabilities—just as abilities can "disappear" for people whose bodies are typical: when we are pursuing our purposes and our bodies are working as they usually do, we are not aware of the abilities that support our efforts. As Drew Leder puts it, disabling traits do not have to "dysappear" (Leder 1990); they do not have to be present to us as bad—as painful or alienating. It is the ableist conflation of disability with pain or alienation that keeps us from recognizing that people flourish in all sorts of bodies.

If one used the insights native to the phenomenological tradition in the ways I've just alluded to, one would be more cautious than Svenaeus is when he speaks of a moral responsibility to selectively abort fetuses with "severe disabling traits."

THE TOOLS IN THE PHENOMENOLOGICAL TRADITION AREN'T ENOUGH

What makes selective abortion so difficult, however, is that it is not just the potential flourishing of a fetus that is pertinent. Overridingly important is the flourishing of a pregnant woman. Some pregnant women fully understand that people can flourish in all sorts of bodies and that raising a child with a disability can be as gratifying as raising a child with a more [End Page 484] typical body, and they nonetheless choose to selectively abort fetuses with disabling traits, on the grounds that that choice is most consistent with achieving the life project that they envision for themselves.

If you accept, as I think you should, that speaking of our lives as "projects" is one important conceptual tool, you will have perhaps already noticed that it is native to the Anglo–American tradition. That is, we who are partial to the phenomenological tradition, insofar as it gives us the tools to raise questions about selective abortion, need to realize that in making our defense of abortion, we will likely find tools from the Anglo–American tradition to be especially useful. Yes, the phenomenological tradition contains tools that can be useful for critiquing dominant conceptions of what it is like to live with disability. Moreover, it can help us remember the importance of "letting things be" and of reining in our impulse to exert control, and it can help us remember that technology shapes our conceptions of what constitutes a good life. But it isn't the first tradition one would look to for tools to defend the right to abortion.

If my description of Svenaeus is accurate, he is partial to the phenomenological tradition, but appeals to the Anglo–American one when giving his account of a moral responsibility to terminate fetuses with what he calls "defects." I, too, am partial to the phenomenological tradition and, ultimately, I too, appeal to the Anglo–American tradition. But instead of concluding that there is a moral responsibility to selectively abort fetuses with some traits, I conclude that it is important to reflect on the assumptions at work in his conclusion—even as I staunchly support a woman's right to abort for whatever reason she deems important. We use tools from the same two traditions, in different ways, to reach different conclusions.

In saying that, I am not deprecating the activity of addressing ethical questions raised by advances in the biosciences and biotechnologies. I am trying to offer a picture of what we are doing that is more accurate than the one that has been around since the beginning of bioethics—the picture where we methodically apply our principles to problems and produce advice as potentially solid as an engineer's. Those who are unfamiliar with the marvelous conceptual tools to be found in the phenomenological tradition should read Svenaeus' book. They just should accept that their work will be more like a bricoleur's than an engineer's. [End Page 485]

Erik Parens

Erik Parens, PhD, is a senior research scholar at The Hastings Center, and Director of the Center's Initiative in Bioethics and the Humanities. In 2015, Oxford University Press published his book Shaping Our Selves: On Technology, Flourishing, and a Habit of Thinking.

REFERENCES

Garland-Thomson, Rosemarie. Forthcoming. "Welcoming the Unexpected." In Human Flourishing in an Age of Gene Editing, edited by Erik Parens and Josephine Johnston. Oxford: Oxford University Press.
Kittay, Eva Feder. Forthcoming. Learning from My Daughter: On the Value and Care of Disabled Minds. Oxford: Oxford University Press.
Leder, Drew. 1990. The Absent Body. Chicago: University of Chicago Press.
Reich, Warren T. 1993. "How Bioethics Got Its Name." Hastings Center Report 23 (6): S6–S7.
Reynolds, Joel Michael. 2018a. "Merleau-Ponty's Aveugle and the Phenomenology of Non-Normate Embodiment." Chiasmi International 19: 419–34.
———. 2018b. "'I'd Rather Be Dead than Disabled'—The Ableist Conflation and the Meanings of Disability." Review of Communication 17 (3): 149–63.

Additional Information

ISSN
1086-3249
Print ISSN
1054-6863
Pages
479-486
Launched on MUSE
2019-01-30
Open Access
No
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