{"id":20330,"date":"2015-08-19T09:00:45","date_gmt":"2015-08-19T13:00:45","guid":{"rendered":"http:\/\/thesocietypages.org\/cyborgology\/?p=20330"},"modified":"2015-08-18T15:53:25","modified_gmt":"2015-08-18T19:53:25","slug":"dignity-bureaucracy-and-bioethics","status":"publish","type":"post","link":"https:\/\/thesocietypages.org\/cyborgology\/2015\/08\/19\/dignity-bureaucracy-and-bioethics\/","title":{"rendered":"Dignity, Bureaucracy, and Bioethics"},"content":{"rendered":"
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Bioethics\u2014the code by which scientists are bound in the conduct of their research for the human good\u2014have been a major field of contention among experts for most of a century. The latest topic to divide this community is also the oldest: Are bioethics ultimately doing more harm than good?<\/p>\n

That was the question posed by Harvard University psychologist Steven Pinker in an editorial<\/a> published in the Boston Globe earlier this month. Pinker couches his piece in a discussion of CRISPR-Cas9<\/a>, a recent and much-hyped advance in genomic mapping and editing. Experts have suggested that this technology could allow doctors to \u201cfix\u201d DNA sequences for any physical ailment. For biotechnologies like CRISPR, it seems as though the sky\u2019s the limit.<\/p>\n

\u201cIndeed, biotechnology has moral implications that are nothing short of stupendous,\u201d he begins. \u201cBut they are not the ones that worry the worriers.\u201d<\/p>\n

Fair enough. No one has ever argued against a technology because of the \u201cstupendous\u201d implications it offers the world. The speed of development worries them, sure, as does the lack of concurrent political and cultural progress. Unintended consequences are always terrifying. But not the moral improvements themselves.<\/p>\n

But Pinker continues:<\/p>\n

Biomedical research\u2026 promises vast increases in life, health, and flourishing. Just imagine how much happier you would be if a prematurely deceased loved one were alive, or a debilitated one were vigorous\u2014and multiply that good by several billion, in perpetuity. Given this potential bonanza, the primary moral goal for today\u2019s bioethics can be summarized in a single sentence.<\/p>\n

Get out of the way.<\/p>\n

A truly ethical bioethics should not bog down research in red tape, moratoria, or threats of prosecution based on nebulous but sweeping principles such as \u201cdignity,\u201d \u201csacredness,\u201d or \u201csocial justice.\u201d<\/p><\/blockquote>\n

A lot to unpack there.<\/p>\n

First, there is a means\/ends argument being made here that is precisely the kind of philosophical proposition against which scientific ethics were established. As the perennial IRB training courses I am compelled to take remind me, research ethics are rooted in attempts to prevent a recurrence of past human rights atrocities, events wherein the powerful have exploited the weak for what was ostensibly the greater good.[i]<\/a> How and why science chooses certain bodies as sacrificial speaks less about best practices than it does about how hegemony seeks to order the world.<\/p>\n

 <\/p>\n

This is uniquely true of bodies that do not consider themselves sick, bodies for which their genetically contingent ailments are a facet of identity and a nucleus of community. In the United States, Deaf Culture<\/a> is perhaps the best-known example. What some identify as a genetic problem in need of biotechnological intervention actually serves as the basis for linguistic, historical, and social cohesion. Indeed, biotechnological \u201cfixes\u201d have been a point of contention<\/a> within the community because they threaten that cohesion. See also the work of Virtual Ability, Inc.<\/a>, a non-profit organization that provides greater access to the online space Second Life for people of various physical and cognitive abilities. In so doing, this organization provides previously unattainable levels of autonomy and social support (and trampoline dance parties) to individuals who would be otherwise marked as \u201cdebilitated\u201d and forgotten.<\/p>\n

Second, this argument assumes an equitable global distribution of technological goods. This is an optimistic perspective: the technology in question could increase life, health, flourishing, vigor! For billions! Forever! <\/em>Shockingly optimistic, considering that this scenario presupposes a world in which billions of people will have access to such technologies. The US Census Bureau<\/a> estimates the world\u2019s population today at around 7.2 billion people, and places only about twenty percent<\/a> of those billions in the developed world. That leaves just over 1.4 billion people who live in nations with any hope of importing the boons of biotechnologies like CRISPR. This figure also belies the staggering inequalities within<\/em> those nations, which preclude whole swaths of inhabitants from seeing the benefits of biotechnology. Not even an optimist could support an estimate of \u201cbillions.\u201d<\/p>\n

That also says nothing about how biotechnologies will (likely not) benefit these societies \u201cin perpetuity.\u201d According to University of Chicago sociologist James Evans<\/a> and colleagues:<\/p>\n

[H]ealth research follows the market, but likely not just because of the market [\u2026] Health researchers are sensitive to problems they are treating, to problems around them, to Grandma\u2019s problems. Countries want to fund research that burdens their populations. Where this leads to inequality in health knowledge is that the disease burden of rich and poor countries are different, and that rich countries obviously produce much, much more research.<\/p><\/blockquote>\n

In other words, the diseases afflicting poorer people in poorer countries get the least amount of attention. This is not only because wealthier countries can afford greater research, but because the diseases impacting wealthier countries are labeled as more imperative to study. \u201cUnlike disease burden alone, the global market for treatment showed a strong relationship with research: For every $10 billion in wealth lost to a disease, the number of research articles on that condition rose by 3 to 5 percent.\u201d Inequalities within countries as well as between them virtually guarantee that the applications of such biotechnologies as CRISPR will always privilege the wealthiest segments of the wealthiest nations, whatever their medical needs may be.<\/p>\n

But the third\u2014and I think the most important\u2014point surrounding Pinker\u2019s argument is the target itself. Pinker and his supporters level attacks at \u201cbioethics.\u201d However, a closer reading of their position reveals bureaucracy <\/em>is their true target. Equating bioethics\u2014a communally-derived rulebook for how to give maximum benefits at minimum harm\u2014with the institutional systems by which bioethics are arbitrated is a mistake.<\/p>\n

\u201cBioethics\u201d was, a century ago, a philosophical endeavor<\/a> attended to by scientists, medical experts, lawyers, and theologians. Originating in Germany (in tandem with the rise of the Frankfurt School<\/a> of critical social theory), bioethics began as an attempt by experts both inside the academy and out to balance the physical and spiritual needs of humanity with the academic and political impacts of science. Early bioethicists enacted change through close mentorship with young scholars and by the mid-twentieth century, bioethics was fully absorbed into university curricula.<\/p>\n

Bioethicist Carl Elliott points out<\/a> that bioethics didn\u2019t take off in the United States as a significant academic discipline until the 1960s. Unlike its origins in Europe, however, American bioethics started within the university and grew out from there. Writing in 2005, Elliott suggests that bioethics is the most robust academic discipline in the United States, \u201ccolonizing new areas even where it is unfamiliar, unexpected, and unwelcome.\u201d To explain this robustness, he points to the close, mutually reinforcing relationship between American bioethics and institutional bureaucracy.<\/p>\n

In Elliott\u2019s view, the close relationship between bioethics and bureaucracy has crafted an academic discipline that moves fluidly between disciplinary boundaries, invites collaboration between academic institutions and the state, and can standardize knowledge across contexts.<\/p>\n

Elliott asks:<\/p>\n

What will this mean for bioethics? First, it is reasonable to assume that the duties, allegiances, and professional identities of bioethicists will be shaped by the institutions in which they are employed. (The first purpose of the bureaucrat, after all, is to serve the bureaucracy.) As bioethicists move from the classroom into hospitals, government entities, professional bodies, pharmaceutical companies, and other organizations, they will naturally begin serving the interests of those institutions. [\u2026] This\u2026 may also affect the content of the field\u2014the actual positions that bioethicists take on ethical issues themselves.<\/p><\/blockquote>\n

What Elliott described ten years ago as key element to the strength and robustness of bioethics, Steven Pinker now sees as getting in the way of a bright technological future. Pinker\u2019s dismissively quotation-marked \u201cdignity,\u201d \u201csacredness,\u201d and \u201csocial justice\u201d in his statements above come off as intentionally provocative but fail to hit their mark. Even if you share Pinker\u2019s revulsion towards things like dignity, does it really make sense to wage war against an abstract concept? Actually changing (or eliminating) the role bioethicists play in innovation would involve attacking the institutions that bioethicists use to carry out their philosophy.<\/p>\n

Pinker situates these concepts as being contrary to the functioning of bioethics because he is focused on the functioning of bioethical bureaucracy<\/em>. Institutional bureaucracies cannot care, they can only codify and implement values like dignity, social justice, or sacredness. Or, in Weberian terms, institutions codify concepts like these in terms that benefit the operation of the institution; ascribing dignity, for example, to labor and individual interest but not to social welfare or the pursuit of pleasure. What Pinker calls \u201cnebulous but sweeping\u201d notions of dignity are, then, notions of dignity that are not bureaucratically codified, or else are coded as resistive. And so, in bureaucratic terms, confronting this dignity is disruptive. Marked concepts like these create fissures through which the unequal distribution of institutional power becomes visible.<\/p>\n

I don\u2019t want to paint the philosophical body of bioethics as an innocent victim in all of this. Bioethical principles, like the science and technology they critique, are reflective of a very narrow set of (mostly Western, mostly European) values. Many segments of society remain excluded from the imagined community that bioethicists aim to protect. Bioethicists should think critically about how their sociocultural blinders effect the role of marked concepts like dignity and sacredness and social justice. One way to do so, as this article<\/a> [paywall] suggests, involves moving those concepts out of the realm of the abstract and into the real, material contexts surrounding emergent biotechnologies. This so-called bio-knowledge<\/em> will provide a basis for discussing the material implications of biotechnology that is rooted in discourses about human rights.<\/p>\n

Disentangling bioethics from the bureaucracy that controls it is also an important step. This article<\/a> [paywall] points out that bioethical processes cannot stop at \u201cvalue clarification\u201d; that is, arguing about where the boundaries are between what can and cannot be done in the name of science. Instead, bioethicists must add to their duties the integration<\/em> of seemingly incompatible elements\u2014for example, the sacredness of human life and the importance of stem cell research, as the author discusses. In so doing, bioethicists can resolve conflicts on the basis of common ground among all parties involved, rather than passing down verdicts from above. Bioethicists must also work on the critique<\/em> of scientific institutions and processes, including a critical look at the Western, European values that dominate modern science.<\/p>\n

If there is a moral highroad here, it falls upon bioethicists to take it. Attacking bioethics because it operates within a bureaucratic framework is, at best, myopic. At worst, it reinforces the very power relations which lead to complex and unequal institutional processes. After all, power is operating most efficiently when we don\u2019t recognize that it is working at all. By rallying for bioethics to \u201cget out of the way,\u201d Pinker only makes more space for ideas on how best to silence unfamiliar, marginal notions of dignity and sacredness and social justice, in the name of streamlining the research oversight process.<\/p>\n

The highroad is usually also a long one. We\u2019ll know we\u2019re on our way when dignity, sacredness, and social justice no longer need quotation marks around them when discussing technological progress.<\/p>\n

 <\/p>\n

Joe Waggle is a doctoral candidate in sociology and a research fellow in the Program for Society and the Environment, where he occasionally<\/em>\u00a0blogs<\/a>. He is also on<\/em>\u00a0Twitter<\/a>.<\/em><\/p>\n

[i]<\/a> That\u2019s as close to a discussion of early human research ethics I can get into without invoking Godwin\u2019s Law. See Nikolas Rose\u2019s The Politics of Life Itself<\/em> for a much braver accounting.<\/p>\n","protected":false},"excerpt":{"rendered":"

Bioethics\u2014the code by which scientists are bound in the conduct of their research for the human good\u2014have been a major field of contention among experts for most of a century. The latest topic to divide this community is also the oldest: Are bioethics ultimately doing more harm than good? That was the question posed by […]<\/p>\n","protected":false},"author":2032,"featured_media":20331,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[9967],"tags":[9226,2418,26656,1598,39],"class_list":["post-20330","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-commentary","tag-biomedical","tag-bureaucracy","tag-collaboration","tag-community","tag-ethics"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/thesocietypages.org\/cyborgology\/files\/2015\/08\/20536525755_f76a3aee6f_z.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/posts\/20330","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/users\/2032"}],"replies":[{"embeddable":true,"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/comments?post=20330"}],"version-history":[{"count":1,"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/posts\/20330\/revisions"}],"predecessor-version":[{"id":20332,"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/posts\/20330\/revisions\/20332"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/media\/20331"}],"wp:attachment":[{"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/media?parent=20330"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/categories?post=20330"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/thesocietypages.org\/cyborgology\/wp-json\/wp\/v2\/tags?post=20330"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}