In Closing

In reading back over the posts of this blog, I realize that I've not arrived at a single conclusion. Fortunately, I don't think that was necessarily the desired result. Rather, I do think that I've chronicled my thought journey through the last few weeks of this course. I think when it comes to bioethics, that it is fairly typical that the answer to any question may lead to multiple other questions. That certainly seems to have been the case here. I hope that anyone that might happen across this series of posts might take something from it, and perhaps be better educated about modern bioethics, or more likely, just be more aware of the questions that are out there. On second thought, I do have a conclusion. That is that like in most of life, fairness and justice for everyone just may not be possible in the arena of bioethics.

To Live Forever

While at the moment, it probably sounds like science fiction, life extension and anti-aging are a couple of the touted potential results of genetic modification. One could ask himself the question, if I could live forever, would I choose to? The answer to this question is quite personal to the asker, but the result affects everyone. Imagine the impacts on the job market. If people never died, when would they retire? Would they stay in the workforce indefinitely? To give some perspective, there are already discussions about what will happen to the job market for later generations if the baby boomers don't retire on schedule. If so, what of the generations to follow? What jobs would be available for them? And jobs are only the tip of the iceberg. The survival of the world we live in depends on a pretty close relationship between overall birth rate and overall death rate. Imagine a world where the population grew at exponential rates. Then things like carrying capacity and limited natural resources, not to mention space, become quite dear indeed. Then, of course, the issue of fairness yet again raises its head. An unspoken part of the social contract is to die. Some live to 50 and some to 100 years old, but everyone dies, moving on and making room for the next generation. If some are able to break this social contract, how can fairness be maintained?

Cost

I now take a more practical approach to fairness. Cost is a huge factor in modern medicine. In a recent piece, Daniel Callahan takes a look at the impact of rising costs on medicine. But what if new genetic engineering techniques come to the forefront? Likely, they would be enormously expensive. And, based on some of the research done for my previous posts, there might be a strong impulse to provide this care for the economically under-resourced. This could only serve to drive medical costs up even further. These costs, of course are borne by the average insurance ratepayer. Namely, you and I. This is where the fairness aspect comes in. Is it fair to make the healthy pay for this new genetic treatment? Would it be considered elective like plastic surgery? I know my insurance won't cover things like breast augmentation. And from a philosophical point of view, do we as the healthy, have a responsibility to the less so to help with their care? Even this question is explored in some of our readings. If we do have an obligation to help, where is that obligation rooted? Again, drawing from Sandel, we consider that the obligation to help is rooted in our more fortunate roll of the "genetic dice" but if our genetic makeup is no longer a chance but now an equation, does that obligation disappear? Quite the dilemma.

Eugenics

Readings late in the course bring me to the discussion of eugenics. To satisfactorily look at eugenics without a knee-jerk reaction, we must first look at what eugenics really is. It is a word that usually brings thoughts of Nazis. In reality, Webster defines eugenics as:

A science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed.

However, with new advancements in bioengineering, control of breeding no longer seems to be the only way to achieve eugenics. With new embryo screening (called preimplantation genetic diagnosis) techniques, scientists can often see into the future of the child long before it's brought to term. With this ability comes great power and no small amount of risk. With this new ability, scientists can tell things like the gender of an embryo.

Eugenics is now being segregated into two types. The authoritarian type, that is associated with Hitler and the Nazis and the new, kindler gentler "liberal eugenics". But what is "liberal eugenics"? In his paper supporting Habermas' view of eugenics, Prusak writes that liberal eugenics "would be distinguished from an old-style, authoritarian eugenics by a great measure of state neutrality, with parents enjoying a largely free hand in 'the choice of the goals of character modifying interventions'" In other words, the government takes a hands-off approach, and parents, or the free market dictate what sort of eugenics are accepted. But is the market really any better equipped to make decisions about eugenics than the government? I think the reason the government might wish to steer clear is a reaction to Nazi policies, and the new distinction between the two types a derivative of this aversion.

A couple of examples to demonstrate the huge risk, and, in my opinion, extremely slippery slope involved in eugenics, regardless of who is behind the choices. First, and this a fairly common one, consider a PGD test reveals that a child is going to be deaf for life if brought to term. The parents are given the choice to select an embryo that won't be deaf. But what if that were to become the next Beethoven?

Another example, which is probably more realistic as well as a bit more insidious, what if a PGD test revealed a child who would become homosexual? What would the parents choose to do? Would they choose another embryo to implant (PGD only works with in vitro fertilization)? I purport that they probably would, even if only to save the child the difficulties of living with discrimination. This, of course, brings us right back to deciding what traits are good and which traits are to be avoided.

It is terribly difficult to arrive at any conclusive opinion on this issue. If the technique involved the selective abortions that were required to do anything with the results of prenatal diagnosis, it would be easier to have a visceral gut reaction against it. But with my continually waffling opinion on life stages, that easy avenue is lost. So I am left considering the rights of parents to select an embryo that would be more likely to be free of disease to the rights of the an eventual child to self-determination. Once again, no easy answers.

"Genetically Rich" Get Richer, Poor Get Poorer

If only the rich can afford to enhance genetics, will there be an increasing gap in the genetic haves and have-nots? Take a look at a modern example: better looking people get hired more often for higher paying jobs. This phenomenon is known as Lookism. This shows that the "genetically superior" (this term should be used with extreme caution, but I think we all know what I'm getting at here) are more likely to have more money, and thus have better access to new genetic modification techniques as they become available. Might this become a repeating chain that feeds on itself? Is the result a genetic upper and under class? Unlike the previous post, this issue is one that applies to both germline and non-germline genetic modifications.

What is the ideal human?

If we accept Stock's argument that genetic modification, including germline modification, is inevitable, we must look at where this might lead, from the standpoint of justice. We might do this by asking ourselves, if we could design the perfect human being, what might that look like. This seems to be a very slippery slope of choosing ideals. As reflected on in the previous post, germline modification changes the genetic makeup of the following generation in such a way that they have no consent to the changes. What if (this seems to be a common starting point for me) the parents made choices that negatively impacted the child. As an extreme example, consider this. A gay couple chooses to have a child (perhaps through a surrogate) and feel that homosexuality is an ideal to strive for (again, this is an extreme example designed to make a point) and endeavor to have their child's genetic makeup altered such that the child is born homosexual. Was this fair to the child? This was a decision made without the child's consent. This raises the question... What IS the ideal? And who decides what that ideal is? And if this "ideal" is achieved, is the end result a loss of variety? As so aptly stated in the cartoon movie "The Incredibles", "If everyone is super, then no one will be super" Put more clearly, if we "manufacture" every child to meet some ideal, than the uniqueness that made those traits stand out and be seen as "super" mean nothing. In his case against perfection, Michael Sandel seems to share this concern. He writes about the potential self defeating nature "Except in Lake Wobegon, not every child can be above average". (I love the social reference)

That isn't all Sandel has to say about this issue. He explores the current phenomenon of parents who push their children incredibly hard to succeed in some way, be it sports, academics etc. He does this to demonstrate the nature of parents and the danger of genetic tools in the hands of overzealous parents.

There are so many traits that make a person unique, and in many cases there really isn't an ideal. I like redheads, my best friend likes blondes. In other words, we may be borrowing trouble here. Its quite possible that given the wide range of what is considered ideal, there will be no great loss in variety. It is more likely that some traits that are more universally liked or disliked will be, well, more universal. For example, if every parent could choose the height of their own child, I would imagine there would still be some variation (some parents might want basketball star children) but there would probably be very few boys who would grow up to be less than six feet tall. Which leads me to the next potention pitfall.

Another aspect of this issue goes back to the issue of affordability. It is very likely that this technology would be quite expensive, thus not available for those lower on the economic food chain. So, does this result in two races: A super race that has been genetically modified, and a "normal" race? Sandel writes on this as well: "From the standpoint of fairness, enhanced genetic differences would be no worse than natural ones, and made available to all" (emphasis mine) All of these questions of fairness and justice must be addressed long before these things become technical possibilities.

Impact of Germ Line Manipulation On Following Generations

Yet another realm of the bioethics debate is question of fairness to children born of germline modification. For the uninitiated, germline refers to genetic modifications that will be passed on to succeeding generations. At issue here is the fact that if genetic modifications are made that are passed down to succeeding generations, those generations will not have had any choice in those modifications. This argument is rooted somewhat in the individualistic approach to these questions. The argument honors the rights of the child as an individual to self-determination.

It occurs to me that this question could be framed another way. Let us compare a child of germline genetic modification to one of completely natural descent. Both of these children could lodge complaints against the preceeding generations for choices they made that affected the child, perhaps in a negative way. The genetically modified child might complain of a modification that perhaps had an unintended consequence that hadn't been considered prior to his birth. But the "natural" child could make a complaint about his genetics as well. As a child short in stature, he could lodge a complaint against his grandfather for marrying and having children with a woman of extremely short stature. In short, the genetic choices we make, either natural or technological in nature, affect our children.

Stock makes an argument on this issue that is quite persuasive. He claims that every time someone is kept alive by medical intervention who would have otherwise died, we have impacted the gene pool, thus affecting the genetic makeup of some future generations (assuming the saved life is of a fertile person who goes on to have child(ren)). He makes this point to show that we aren't "playing God" when we perform germline genetic modification any more than we are when performing accepted medical procedures.

Spare Parts

Today I reflect back on the issue of growing embryos simply to have a source of spares "just in case" something should go awry at a later date. A brief search points me to an article from an Australian newspaper that informs us that a law is working its way through the British political system that would allow for the creation of "spare" embryos for the purposes of harvesting stem cells for treatment of sick children. While the image of an ill child is hardly the poster for fairness and justice, neither perhaps, is the thought of the production of "potential children" simply to have spare parts in case something goes wrong. This, of course, leads us back to the debate over demarcation. If one believes that person-hood and the associated right to life is not achieved until a point biologically later than that at which the embryos are destroyed, this debate can largely be sidestepped. If however, one believes that life begins at conception, than the destruction of embryos is tantamount to murder, and the intentional production of life only to snuff it out before it has a chance to be born is even more morally repugnant than merely using existing stem cell lines. Unfortunately for the sake of my own ease, I've yet to reach my own conclusion about when I think life begins.

Nature vs. Nurture: Reaction to the Twin Studies

This was the first time I'd been introduced to the twin studies and I found them very interesting and also very germane to the debates surrounding genetic modification. Stock uses these studies in his quest to explore what kind of genetic modifications might be possible or probable, but I find their results to have more impact on the questions of equal opportunity, as addressed in a previous entry. To wit, if genetics and environment play approximately equal roles in talent and abilities (IQ was listed as being 45 to 75% attributable to genetic makeup) How does that impact the discussions about leveling the playing field? Say we consider a genetic lottery and a cultural lottery. (These concepts are used in a couple of our readings) Every child is born with a roll of the both dice. He could be born with great genetic gifts but an environment of terrible poverty, or be born "genetically unfortunate" but have all the opportunities that his parents' money can buy. If we buy into the third form of equal opportunity where the playing field must be leveled to account for deficiencies in the child, we now must figure out which deficiencies we level the field for. If the child is of above average intelligence, but due to upbringing, can't read, is it fair to genetically enhance him to make up for the inequities of the more challenging environment? The same question could be asked about athletic prowess, attractiveness, or any number of other traits that are affected both by genetic makeup and environment.

Equal Opportunity

Despite the reprieve given regarding the Buchanan piece, I went ahead and gave it a look since it dealt with my chosen topic of justice or fairness. This appears to have been a fortuitous decision. One of the first ideas addressed by Buchanan is the question of what is equal opportunity really is. I imagine an ethicist or researcher would have a difficult time finding someone who actually believed that there was no right to equal opportunity, but I'd never given clear thought to what is really meant by the words. Buchanan identifies three levels of equal opportunity. The first two are similar in that they both promote a world where people of similar talents and abilities are given the same prospects. The difference being the first requires only the elimination of legal barriers where the second requires that both legal and "informal" barriers be eliminated. (An example of these barriers was given to be institutional racism that didn't rise to the level of legal discrimination.) The third version of equal opportunity required not only the removal of barriers for people of similar abilities, but also a "leveling of the playing field" so that people of lesser abilities could have the same prospects for success. This definition of equal opportunity is troubling when considered in the context of genetic modifications because of the forms that this leveling of the playing field might take. For example, if modern biomedical technology brought us to a place where a person's capability to reason could be enhanced through genetic modification, might this third interpretation of equal opportunity require "us" to provide the person with the crappier roll of the genetic dice an enhancement so he might have access to a level playing field? BUT....... What if the genetic enhancement IS the prospect? Does the "genetically inferior" have more right to enhancement than the guy with the better roll of the dice??? Quite the quandary. One must admit that the idea of a world where everyone has the exact same abilities, either through birth or enhancement sounds a bit spooky.
Yet another facet of this argument harkens back to the debate about what is illness or deficiency and what is just simple human difference. Yet again we use intelligence as our surrogate, but many others might do as well, for example athletic ability. If we decide at some point that a right exists to the "repair" of a genetic flaw, but not to enhancement, where do we draw the line? Triple digit IQs? Quite the quandary indeed.

Equity for the Unborn

This is simultaneously a very simple, and extraordinarily complex issue. Those who believe that life begins after the point at which embryos used in stem cell research are destroyed get a "pass" from this debate. Much to my chagrin, I've still not found myself a firm footing along the path of demarcation. This is so core to the entire stem cell debate (and the even more volatile abortion debate, which also seems to rob me of any easy answers) because until one defines where life begins, how can one assign rights to a biological entity? As a Christian, it would be easy to pass the thinking off to others and just accept the conventional wisdom within that realm that life begins at conception, and any interference after that point is morally unacceptable. However, I don't find it quite so simple.

If one takes the position that personhood is achieved in stages, then we get back into the communitarian vs. individualism argument. In Ruse & Pynes chapter 14, McGee and Caplan make the argument that even if an embryo has the moral status of a a person, that status neither guarantees "the right to gestation, or a risk free path into maturation". Further, they argue that it is wrong to attribute a "super status" that outweighs the needs of others in the human community. These are good points, but they conflict with my support of the individualist arguments. That is to say that I feel that the rights of the individual do outweigh those of the community.

I find encouragement in the recent developments around induced pluripotential stem cells. To be able to continue stem cell research and to possible realize some of the things that have been promised while sidestepping the issues of demarcation seems to be a huge benefit. However, in my term paper, I looked at this issue and don't think that there will be any escape from this debate any time soon. As I discussed in my paper, even if iPS cell research comes to fruition, embryonic stem cell research isn't going away, for a variety of reasons.

I'd like to say that I've come to some sort of conclusion on this, but throughout the readings and discussion, I find myself more conflicted than when I began.