The last couple of chapters in Medical Ethics have been more discussion-based, both in the book and in class. It has made it a little more difficult for me to write these blog posts, because I don't want to just regurgitate content from the book. I've actually enjoyed keeping up on this blog and being able to explore my opinions and develop them in a way that is backed by years of biological, medical, and philosophical research and discussion. Chapter 12, titled "Using One Baby for Another", goes back closer to the format of the first 9 chapters, starting with personal stories and building on ethical arguments from there. Not that that's a bad thing! Personal stories are where all of this stems from, because everything that has ever happened involving humans was personal to somebody.
This chapter was a long one, and full of questions. The title for this post comes from the title of the chapter, which focuses on the ethical dilemma of using infants as "donors". This is a difficult question when it comes to babies born anencephalic, and potential organ "donation". It could be better framed as "organ transfer/recovery/reassignment", as the term "donation" requires consent from the donor (Pence 303). This is a complex question that is still being debated, and ultimately only would allow for about 30 recipients per year, according to one study (Pence 305). Anencephaly is the most serious of birth defects, and over 95% of anencephalic pregnancies identified prenatally are aborted and of those carried to term, 60% are stillborn (Pence 294). Most ethicists and doctors have agreed that the numbers are too small for massive changes to elicit changes in qualifications of brain death and the possibility of organ transfer (Pence 305).
So, even the shortest section in the chapter is complex and calls for several considerations. Now let's move to the rest of the content from this chapter, it's full of ethical and moral dilemmas and all of the good, complex, brain-splitting questions that I don't have answers to.
The first case addressed in this chapter took place in October 1984 with a baby born with hypoplastic left heart syndrome (HLHS), also known as the Baby Fae case. I'm going to focus on this case, even though there were others discussed. I'm sure we'll discuss them in class tomorrow. The answer/treatment/experiment involved in this case was a xenograft heart from a baboon two weeks after she was born, and she lived for 3 weeks after the operation. This case involves the use of animals as resources for humans, which is an ethical question that has been explored to some extent and still does not have a complete conclusion. Do we always put human beings ahead of "subhumans" and is it ethical to harvest organs from these organisms to use in humans (Pence 297)? Or do all primates have equal moral value (Pence 296)? Where does future research involving putting human genes in animals with the intent of eventually using those organs for humans fall in this spectrum?
Another issue addressed in this case was the possibility for alternative treatment. The surgeon, Leonard Bailey, admitted that he wasn't looking for a human heart to use even though there was an infant heart available on the day of Baby Fae's operation (Pence 297). There was another alternative as well, a surgeon had developed a procedure (the Norwood procedure) for infants with HLHS that attempted to repair the left ventricle and had been successful in in 40% of operations (Pence 298). Whose decision should it have been? Was Bailey's decision to ignore the available human heart, not proceed with the Norwood procedure, and go after a baboon xenograft a logical and valid decision given his interest in xenografts and proximity to the case? Should he have involved a larger team? Should a xenograft even have been considered as a viable option given the low success rates in previous cases?
In addition to this, informed consent in Baby Fae's case can also be called into question. Because Fae's mother did not have medical insurance and was not able to pay for expensive medical treatment, and because Bailey offered her the xenograft for free, was she exploited in Dr. Bailey's attempt to perform a successful xenograft? Was she informed of the risks of a xenograft? Was she even told about the human heart that was available and was that also presented as a free option? Does this lie under coercion? Did her consent really count as fully informed?
And if this isn't enough questions/considerations, the media also got involved. This is an issue I have a clear stance on, though. I agree with Dr. Reemtsma on the issue of media involvement, that, "Science and news are, in a sense, asymmetrical and sometimes antagonistic. News emphasizes uniqueness, the immediacy, the human interest, in a case such as [Baby Fae's]. Science emphasizes verification, controls, comparisons, and patterns" (Pence 301). The media doesn't really have a place in this and while patients absolutely have a right to know everything that is going on with their personal cases, the public doesn't necessarily have a right to know details. Ethical and moral dilemmas can (and should!) be discussed, but the media doesn't need to sensationalize people's lives.
I don't have exact answers to all of the questions raised in this case, but at the conclusion and after all is said and done, the case of Baby Fae qualifies as an experimental procedure. Ultimately, it wasn't one that offered a reasonable chance of benefit, all it really offered was uncertain and unknown chances, which fits under the definition of research (Pence 301). In this particular case, there are at least six pieces of incriminating evidence that indicate clearly that the path taken was not the best option at the time (Pence 303). There are other questions that come into play though, because medical research is required if there is ever to be further developments and discoveries. So, where and in what cases should experimental procedures occur? Or should they occur at all? Like I've suggested in other posts, I think a lot of bioethics comes down to informed consent and questions of viability.
As there has been in previous chapters, there is a lot to consider here, and I'm looking forward to further discussion. Leave a comment, and let's chat about it! I'd love to hear from you.
Textbook reference:
Pence, Gregory. Medical Ethics: Accounts of Ground-Breaking Cases. 9th ed., McGraw Hill, 2021.
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