What is "Bioethics"? pg.3

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VII. The National Commission and Bioethics: A Short Analysis

A. Odd scientific definitions:

Of note, the National Commission used several "odd" scientific definitions its individual reports, e.g., in its Report on Fetal Research. Even the Commission acknowledged this:

For the purposes of this report, the Commission has used the following definitions which, in some instances, differ from medical, legal or common usage. These definitions have been adopted in the interest of clarity and to conform to the language used in the legislative mandate" [referring to the National Research Act 1974].62 (emphases mine)

Among such "unique" scientific definitions used by the Commission was its definition of "fetus" as "the human from the time of implantation [5-7 days] until a determination is made following delivery that it is viable or possibly viable."63 Similarly, the new OPRR federal regulations (also part of the same Congressional mandate, and based on the same "bioethics principles" identified by the National Commission) contains two "unique" scientific definitions. "Fetus" is again defined there as "the product of conception from the time of implantation ..."; and "pregnancy" is defined as "the period of time from confirmation of implantation ...".64

Of course, such "definitions" are rather bizarre, as the single dissenting report by Commissioner Louisell pointed out.65 Indeed, decades before the "birth of bioethics", human embryology textbooks had defined the "fetus" as beginning much later in development -- at about the ninth week after fertilization,66 not as beginning at implantation (5-7 days after fertilization). Similarly,"pregnancy" had always been defined as beginning at fertilization.67

So how did the definitions of such basic and critical scientific terms as both "pregnancy" and "fetus" come to be so erroneously defined as "beginning at implantation" (5-7 days after fertilization)? How could such blatantly scientifically erroneous definitions have passed Congressional scrutiny? This is, after all, Biology 101.68 Clearly, such "odd" scientific definitions -- or redefinitions -- in the Commission's Report would serve the purpose of removing "flushed" human embryos and artificially produced human embryos from any sort of governmental protection or oversight. From the National Commission onward, these human embryos have never been acknowledged by the federal government as "human research subjects" to be protected from research abuse, and none of the federal regulations to follow would apply to them -- right up to the present day. Nor has the correct Biology 101 yet been used with reference to the definition of "early human embryos" or "human fetuses".

The rationales of some of the papers presented to the Commission on this issue are interesting, and might provide some insight. Many of those who were members of or who testified before the National Commission did not consider the early human embryo or even the early human fetus as a human being, or as a human person, and therefore these embryos and fetuses did not warrant federal protection as research subjects.

For example, Richard McCormick, S.J., had already argued earlier that defective newborns could be allowed to die. Applying the Catholic moral theology distinction of the Principle of Double Effect, McCormick concluded that the term "extraordinary" was large enough to justify the omission of life-sustaining treatments on the basis of expected diminished quality of life, defined in terms of the potential for human relationship.69 McCormick had also agreed with the May 1979 EAB recommended approval of federal funding of research on the safety and efficacy of IVF and embryo transfer in the treatment of infertility -- departing from the Vatican's position against any technologically assisted pregnancies, even in lawfully married couples.70 Now, following similar work by Andre Hellegers71, McCormick seriously questioned the "moral status" of early human embryos (or, "pre-embryos" as he referred to them), as did several others within the Catholic Health Association.72 Furthermore, McCormick reluctantly agreed that since some abortions are acceptable, then some fetal research would also be acceptable. He had reasoned that children have a moral obligation to participate in nontherapeutic experimentation where there is no discernible risk or undue discomfort, and therefore their parents may give proxy consent for their children's participation in such research that would not benefit them personally. He grounds this moral obligation in social justice -- i.e., "to contribute to the benefit of the human community." The same moral obligation, argued McCormick, can be extended to the fetus.73 Paul Ramsey also had qualms about the "moral status" of the early embryo, and also reluctantly sanctioned fetal research.74 Thus these presenters, as many others, claimed that morally relevant characteristics were not present in the early developing embryo until "segmentation", or the attainment of "individuality" about 14-days, or even later, during human development than that.75

As we shall see, the arbitrary use of "ethical principles", erroneous human embryology, and still highly contested and controverted philosophical conclusions about the "moral status" (or, "personhood") of the early human embryo and human fetus would play a major role in building up the growing bioethics ediface, which was soon to become a "mantra" in its own right.

B. Problems with the principles:

The Belmont principles were supposedly ultimately derived from the normative ethical systems of various moral philosophers - e.g., Kant, John Stuart Mill, and John Rawls. In effect, they quite selectively took bits and pieces from different and contradictory ethical theories and rolled them up into one ball. Furthermore, each of these principles were referred to as prima facie76 - i.e., no one principle could over-rule any of the others. And the way we come to know these bioethical principles is by taking courses, attending conferences, and listening to bioethicists lecture at conferences.

However eventually, and inevitably, theoretical cracks began to form in the very foundation of this new "bioethical" theory. For example, because bioethics was derived from bits and pieces of fundamentally different and even often contradictory theoretical philosophical systems, the result was theoretical chaos, rendering it academically indefensible. More problematic, when people tried to apply the theory, it didn't work because practically speaking there was no way to resolve the inherent conflicts among these three prima facie principles. Paul Ramsey had complained about this specific problem early on, when such a suggestion (by Jonsen and Hellegers) was submitted at an early conference: "Within the amplitude ... of general ethics, our authors fail to address clearly and rigorously the issue: which of these moral principles has priority (e.g., in the case of conflict)?"77 The inherent contradictions and conflicts between and among these prima facie bioethics principles would slowly erode the confidence of even those stalwarts within the field itself.

Even each of the bioethics principles individually is riddled with similar inherently contradictory conflicts and theoretical problems. For example, while the Commissioners of the Belmont Report gave a nod to the traditional Hippocratic understanding of "beneficence" in one definition as "doing good for the patient" (or at least, doing no "harm"), their "second" definition of beneficence is essentially utilitarian -- in terms of the good for society at large (or roughly, "the greatest good for the greatest number of people"). Obviously these two different and opposite definitions of "beneficence" could easily contradict each other. How can the "bene" refer to the good of an individual patient in the standard medical or the research setting, and at the same time in the same case refer to the good of society -- calculated in the crude terms of utilitarian "risks and benefits"? What physician, who has sworn the Hippocratic Oath, would even recognize the following definition of "doing good" that is found in the Belmont Report:

Persons are treated in an ethical manner not only by respecting their decisions and protecting them from harm, but also by making efforts to secure their well-being. Such treatment falls under the principle of beneficence. The term "beneficence" is often understood to cover acts of kindness or charity that go beyond strict obligation. In this document beneficence is understood in a stronger sense, as an obligation. Two general rules have been formulated as complementary expressions of beneficent actions in this sense: (1) do not harm and (2) maximize possible benefits and minimize possible harms. The Hippocratic maxim "do not harm" has long been a fundamental principle of medical ethics. Claude Bernard extended it to the realm of research, saying that one should not injure one person regardless of the benefits that might come to others. However, even avoiding harm requires learning what is harmful; and, in the process of obtaining this information, persons may be exposed to risk of harm. ...In the case of scientific research in general, members of the larger society are obliged to recognize the longer term benefits and risks that may result from the improvement of knowledge and from the development of novel medical, psychotherapeutic, and social procedures.78 (emphases mine)

Doesn't sound terribly "Hippocratic", does it? Nor does the claim that all individuals of society have a strong moral duty to participate in purely experimental research "for the good of society" or "the advancement of scientific knowledge" sound Hippocratic. Yet it was The Belmont Report's utilitarian definition of "beneficence" which was to be quickly perpetuated throughout the emerging bioethics literature, e.g., as defended in the first bioethics textbooks by Beauchamp, Childress and Walters,79 and assumed as a standard by virtually every bioethics conference, committee, panel and commission to come -- including the current sitting National Bioethics Advisory Commission appointed by President Clinton80 (see below).

This "strong obligation" of the utilitarian-defined Belmont principle of "beneficence" blatantly contradicts the long-held international codes of research ethics, e.g., the Nuremberg Code and the Declarations of Helsinki, in which the protection of the individual patient always outweighs the needs or "good" of science or society. As stated unambiguously in the Declaration of Helsinki:

Concern for the interests of the subject must always prevail over the interests of science and society [Basic principles]... The physician can combine medical research with professional care, the objective being the acquisition of new medical knowledge, only to the extent that medical research is justified by its potential diagnostic or therapeutic value for the patient [Medical research combined with clinical care - clinical research]... In research on man, the interests of science and society should never take precedence over considerations related to the wellbeing of the subject [non-therapeutic biomedical research involving human subjects - non-clinical biomedical research].81 (emphases and inserts mine)

Even the Belmont Report itself admits this inherent contradiction in its own definition of "beneficence": "Here, again, as with all hard cases, the different claims covered by the principle of beneficence may come into conflict and force difficult choices."82 Choices based on what? The normative ethical theory of utilitarianism?

Utilitarianism has always had serious problems with defining in practice what "good" is,83 but it is generally very roughly reduced to some sort of lack of physical or mental pain or pleasure -- or inversely, as "sentience". One thing is clear, however. All utilitarian formulas, by definition, leave minorities and the vulnerable out in the cold. There are no moral absolutes here - only "rules" or mathematical risk/benefit ratios, which are by definition relative to "the greater good". As utilitarian, the general norm or standard against which one determines if an individual action is right or wrong is "utility"; i.e., if that action is useful to achieving good consequences, those also being defined in terms of "the greatest good for the greatest number". (Even more problematical to come would be the deconstruction of these classical forms of utilitarianism into what would be termed "preference" utilitarianism, where what would be weighed and balanced would be "interests" -- as developed in the works of British eugenicists such as Jonathan Glover and R.M. Hare, and Australian bioethicists Peter Singer, Kelga Kuhse, etc.; see below).

The bioethics principle of "justice" in The Belmont Report is also ultimately defined along utilitarian lines, in terms of "fairness" -- i.e., fairness in the distribution of the benefits and burdens of research.84 This is not your classic definition of "justice", e.g., in the Aristotelean sense of communitive or distributive justice, but rather in terms strongly influenced by Harvard Graduate School philosophy professor85 John Rawls, as articulated in his then-new book, A Theory of Justice.86 Rawl's "theory" of justice also profoundly influenced the theory-makers of bioethics from several other different academic disciplines. For example, it would later be adapted by his student Norman Daniels and applied to health care87; it began to "creep into law", e.g., through lawyer/bioethicist John Robertson, who quoted from Rawls in influencing the justices' decision in the Saikewicz case -- resulting in the still controversial legal concept of "substituted judgement"88; it has also been applied by Arthur Dyck in international population policy issues.89

Even the bioethics principle of "respect for persons" eventually ends up serving "the greatest good". Now, how on earth could that have happened, one might perceptively ask? Well, as noted above, it is The Belmont Report that explains that "respect for persons" includes the duty to participate in non-therapeutic research for the greater good of society. And the question arises: How could the principle that was supposed to ground an inviolable respect for each individual human being be defined in terms of a utilitarian respect for "society"?

Perhaps it has to do with some of the more influential participants in the Commission's original proceedings. Even Jonsen, in his description of the National Commission, admits the clear prejudicial nature of the leanings of the members of the Commission and its staff: "Most of the commission and staff were of a liberal bent!"90 Translated into scholarship, the classic moral philosophy traditions were barely blinked at, and even the selection and interpretations of modern and contemporary moral philosophies were essentially open to considerable deconstruction. For example, as Jonsen noted, "When Beauchamp and Childress formulated the principle of autonomy, they fused the Kantian concept of respect for persons with John Stuart Mill's quite different notion of liberty ... Folding together the distinct views of Kant and Mill blurred the edges of both the Kantian and the Millsean notions."91 It also, of course, blurred the edges of the metaphysical, epistemological, and anthropological presuppositions inherent in those diverse and contrary theories of ethics. Hence, Kant's "respect for persons" evolved rapidly into the Millsean utilitarian version of "respect for autonomy" (pace Tom Beauchamp) -- where "autonomy" referred only to "persons", and "persons" were defined as "moral agents". Most unfortunately, what it also did was turn non-autonomous human beings into non-persons (since they are not "autonomous moral agents").

At any rate, after all is said and done, bioethics is ultimately reduced more or less to some form of utilitarianism or relativism, where "the good of society" is the morally relevant principle, and the "good of the individual person" is clearly not top priority.

C. Problems in applications:

Eventually, practical cracks too began to form in the foundations of this brave new bioethics, cracks which seemed to widen deeper the more the "theory" was applied -- as admitted in publications by even many of the Founders themselves - the best kept secret in bioethics! For example, The Hastings Center's Daniel Callahan conceded in the 25th anniversary issue of The Hastings Center Report celebrating the "birth of bioethics", that the principles of bioethics simply had not worked. But not to worry, he said, we might try communitarianism now: "The range of questions that a communitarian bioethics would pose could keep the field of bioethics well and richly occupied for at least another 25 years"!92 Jonsen himself devotes considerable space to the critics of bioethics in his book, The Birth of Bioethics, and even courageously admitted years earlier, in his "Preface" to the first serious book confronting the myriad inadequacies of "bioethics principlism", that there were only two real ethicists on the National Commission, and that they had essentially made the principles up. Jonsen also agrees with the premise of the book that bioethics should now be regarded somewhat as "a sick patient in need of a thorough diagnosis and prognosis":

A fairly widespread perception exists, both within and without the bioethics community, that the prevailing U.S. approach to the ethical problems raised by modern medicine is ailing. Principlism is the patient. The diagnosis is complex, but many believe that the patient is seriously, if not terminally, ill. The prognosis is uncertain. Some observers have proposed a variety of therapies to restore it to health. Others expect its demise and propose ways to go on without it.93

Gilbert Meilaender's early and incisive suspicions about the consequences of the several philosophical "mind/body splits" inherent in bioethics theory emerged in yet another important book, in which he explained "how easily the 'soul' - attention to the meaning of being human, a meaning often illuminated by religious and metaphysical insight - can be lost in bioethics."94 Other controversies and battles over the validity of the bioethics principles on many levels are documented and collected in an already classic 1195-page tome edited by Rannan Gillon,95 in which 99 scholars from around the world jump into the fray -- by far the majority of them arguing against "principlism".

One of the strongest critiques of "bioethics" came from another one of the early Founders, Renee Fox, a sociologist. Referring to "American bioethics" as isolated from the relationships, communities, and values of real life in sickness and health, she argued that the isolation produced an uneasy relationship between the social sciences and bioethics. Bioethics, she wrote, confined in its individualism and American chauvinism, rendered an "impoverished and skewed expression of our society's cultural tradition (which), in a highly intellectualized but essentially fundamentalistic way, thins out the fullness of that tradition and bends it away from some of the deepest sources of its meaning and vitality."96 As Jonsen puts it, Fox perceived a genuine gap in the theory and method of bioethics. There is no easy and consistent flow of empirical data into ethics. Methods for gathering that sort of data, for interpreting it and fitting it into normative analysis are seldom familiar to ethicists. And the methods of ethicists are seldom known to behavioral scientists. Additionally, Fox argues that the data of the behavioral sciences often reveal situations as more complex than ethicists perceive them to be, rendering a straightforward ethical analysis more difficult.97 In a scathing article against bioethics, "Leaving the field", Fox and Swazey responded in depth and detail to the horrendous ethical dilemmas they considered posed by organ transplantation, especially on an international scale.98

Equally problematic is the fact that only a very tiny percentage of "professional bioethics experts" have any academic degrees in bioethics at all, and even for those few that do there is no uniform or standardized curriculum, most teachers don't really know the subject matter themselves, the courses vary from institution to institution, there are no local, state or national boards of examinations, and no standardized professional responsibilities are required. There is not even a code of ethics for bioethicists. Most "bioethicists" by far have never taken even one formal academic course in bioethics.99

The questions arise: What are they "experts" in? To whom are they accountable for their "expertise"?

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