Essay: Ileana Final Portfolio Bioethics

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[. . .] Other examples include the Willowbrook and Tuskeegee experiments in Unit Four, which I had heard about but only in a diffuse anecdotal sense. Now I have a more formal understanding of the justification behind human subjects review and the importance of Institutional Review Board oversight before any experiment no matter how seemingly innocuous the treatment.

Once we had identified and mastered the concepts underlying these theories, we demonstrated their application in modern ethical controversies. The result was the realization that these ethics are each a process toward obtaining answers for sophisticated modern moral problems. Applying these historic perspectives played out through selection of examples that demonstrate how these methods provide a framework and process to evaluate new ethical conundrums Kant, Bentham, Mill or Aquinas likely could not even imagine. Considering the examples just cited from Unit Three provoked discussion of autonomy, universalizeability and consistency that underlie all of the formal methods we learned to employ:

In the Willowbrook State School Study and the Tuskegee U.S. Public Health Service Study, several ethical problems arose. Every individual in our society has the right to freedom and autonomy. Autonomy is defined as "independence or freedom, as of the will or one's actions" (Collins English Dictionary, 2009). In both examples mentioned above the autonomy and freedom of the subjects were infringed upon due to the lack of informed consent, and there was a lack of protection of the rights and the welfare of the human subjects in the experiments by the entities that conducted the studies.

Then in Unit Four we expanded this formal analysis into a paradigm that would run throughout the rest of the work, and it became natural to start evaluating existing dilemmas I had encountered in my own experience and practice in these new terms from deontology, consequentialism, ethics of care and other formal frames that emerged from my research:

I am quite torn over this subject because I worked in a research clinic and saw with my own eyes what goes on with non-therapeutic studies. My argument is against human experimentation in non-therapeutic studies on the most vulnerable members of society, which include: children, mentally challenged, mentally ill, those in pain, those in total institutions, prisoners, ward patients, those in military service, students in colleges/universities and fetuses.

My argument is supported by the Kantian theory of ethics which states that "every person must be treated as an end in themselves, and not as a means only. According to this view of ethics, morality is a matter of absolute -- i.e., universal and unconditional -- duty. More importantly, Kantian Ethical Theory would prohibit the vast majority of these experiments" (Berkich, 2002, cited in Pecorino, 2002, n. pag.).

Like Utilitarianism and unlike Kantian Ethical Theory, the thought that human experimentation is important and ought to be pursued is supported on yet another ethics theory not discussed in Unit1 named Social Contract Theory. Social Contract Theory states that "morality consists in the set of rules governing behavior that rational people would accept, on the condition that others accept them as well." But like Kantian Ethical Theory and unlike Utilitarian Ethics Theory, Social Contract Theory implies that experimentation on the most vulnerable members of society is morally wrong.

Practical Application

Once we mastered the formal principles and methods of framing questions in theoretical discussion, it became almost impossible to not consider dilemmas I have found in my own practice and experience, through those lenses. One of the main underlying bioethical dilemmas is scarcity of limited medical resources, which I have seen play out in my work every day, although I never considered scarcity through a formal bioethical filter before:

As a school nurse in the public school system in a low income area I hand out a list of low cost community health clinics to parents who have no insurance quite frequently. If they qualify through proof of low income and proper documentation, then an office visit could cost them $30/visit. Some parents have told me that they could afford this, yet others have told me they cannot. Government needs to step in and regulate free enterprise systems so that the rise in cost and premiums is not overwhelming the average American citizen. Once this is done it will trickle down to the rest of the population and those clinics charging $30 a visit, could now charge $5 or $10 a visit. The same premise applies for expensive and sophisticated medical technologies (Unit Three).

Our discussion of informed consent in Unit Five helped me create my own rubric for human experiment that I will adapt and apply in evaluating research I encounter or participate in during the course of my career:

In addition, this author would be for therapeutic studies if and only if the following applies:

1. Subjects must volunteer

2. Freedom to withdraw

3. Unnecessary risks are eliminated and prior animal experiments have been conducted

4. Benefits to subjects / society must outweigh the risks and harms

5. Only qualified individuals and researchers

CONDITIONS for an experiment to proceed

1. Experiment is justified because science has progressed to that point

2. Prior non-human experiments have been conducted

3. Chance of benefit for the subject

4. Subject is informed of diagnosis, prognosis, and alternatives

5. Subject consents

6. No better alternative is available

7. Continuation of the experiment is not assumed

8. Side effects or damage to the subjects caused by the experiment is responsibility of researchers

INFORMED CONSENT

a. Competent individuals

b. Informed

c. Voluntary

Our Unit Five made me question my own personal values in the case of a different kind of absence of consent, sexual assault, in ways I had never anticipated considering before:

I used to think that rape was at best the most rational reasoning for an abortion until I met a friend who told me that her 12-year-old daughter, whom I complemented and thought of as so loving and adorable, was the product of an assault and rape she sustained when she was younger. She went on to explain to me that as hard as it was for her to overcome and endure the rape, that the unborn life in her had no fault of such act and that she never regrets having her.

In the same assignment, the terms we were discussing revealed an absurd result from commonplace justifications for abortion, which demonstrates how finding absurd results from a sound ethical process is the means ethics uses to demonstrate flaws in real-world assertions:

Then there are other situations where I believe that an abortion is not warranted. In those cases I subscribe to natural law and Kantian ethics. Natural law is associated with the instinctive desire of persons to have offspring and their willingness to invest immense energy in children's upbringing and well-being -- even to the point of personal sacrifice, and even to sacrifice of life. Kantian deontology would be against abortion based on the premise that as a universal law every woman would have to get an abortion and in that case the human race would eventually cease to exist. I believe that if one supports abortion as a personal decision then it is fair to ask if one would support the idea of their own non-existence had they been aborted, as a moral, ethical, fair, and just decision as well?

This absurd result of someone considering their own non-existence through abortion moral, fair and just is a classic example of the method ethics uses to demonstrate either a flawed proposition in the empirical world around us, or a flawed reasoning model. If the model holds, in this case relying on the fundamental deontic requirement of universalizeability, then the real-world argument fails. Given this assignment to do over again, I would have probed for exceptions to the generalizeability constraint and developed this model farther to make sure this constraint was truly universal. The way it is phrased here, however, holds if we insert or imply an "if" before "Kantian deontology would be...;" also this discussion was only halfway through the course. My perspective now is the result of more refined information since this assertion but the consideration demonstrates how "Analytical Skill Building" from section I above is a process rather than an outcome just like the practice of applying formal bioethics to real-world problems.

In the same way, I have new perspectives considering my own work as recently as Unit Five, for example. Whereas before I argued that

#2) Utilitarian view on babies born with defects or disabilities:

Through a utilitarian view of this issue, the argument is made in support of killing disabled infants or infants born with defects based on what is termed 'preference utilitarianism,' which argues that an infant cannot yet be considered a human being with interests, so the preferences of its parents take precedence… [END OF PREVIEW]

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