Monday, May 29, 2006

IEET Conference - Comprehensive Report - Part 2

Introduction * Part 1 * Part 2 * Part 3 * Part 4 * Part 5

This entry represents Part 2 of a comprehensive report on the talks I attended at the Human Enhancement Technologies and Human Rights conference presented by the Institute for Ethics and Emerging Technologies. The narrative presented here represents my own personal observations and interpretations of the event and the subject matter discussed therein, and I encourage anyone who reads this who was also in attendance to note any factual errors I may have made and to offer any criticisms of my responses that seem merited.

11:00 AM - 12:00 PM - Parental Obligations and the Consent of the Unborn

This was a panel moderated by Dr. James Hughes. Panel members were Kirsten Rabe Smolensky, J.D. whose talk was entitled "Parental Liability for Germline Genetic Enhancement: To Be or Not to Be?" and Martin Gunderson, Ph.D., who discussed "Genetic Engineering and the Consent of Future Generations".

Ms. Smolensky's presentation was introduced with a series of conditions that were put forth as a matter of focusing the talk on particular legal issues that might ensue from parental manipulation of the genes of a fetus. These conditions were:

1.) That, for the purposes of discussion, genetic alterations be limited to those applied to the pre-born.

2.) That, for the purposes of discussion, germline changes, rather than somatic changes, are assumed to be the issue.

3.) That, for the purposes of discussion, whatever technology required to accomplish these germline changes is safe and effective (it will not produce effects other than the intended enhancement or decrease viability, and will definitely work if applied).

4.) That, for the purposes of discussion, enhancement rather than "gene therapy" is the subject at hand.

Smolensky did not go into depth in defining "enhancement" from her perspective and distinguishing it from "therapy", however, I can understand why, since it was not extremely relevant to the main topic of her presentation, which was that of potential reactions to (and legal actions taken by) children who grow up and decide that they want to sue their parents for violating their "right to an unaltered genome". There are international documents that supposedly (I haven't read these documents, but I can assume Smolensky has) attempt to define such a right.

This presentation described some of the history of parental rights and liabilities, which was quite relevant since familial ties do often result in different responses to possible instances of abuse or neglect. The concept of "parental tort immunity" was explained, and this was quite interesting since I'd never heard of this concept before. Basically, this "tort immunity" was established originally to protect the members of a family not involved in a particular dispute from being adversely affected by the consequences of that dispute. An example of this, Smolensky pointed out, would be a case in which one child sued his or her parents -- this could, in certain cases (depending on locale and time period) be denied on the basis that if one child in the family took all the financial assets, siblings might suffer.

I learned (to my horror) that children were often considered as "property" into the 1800s. Clearly, much has happened since then in terms of improving the treatment of children and the overall sense of respect for children as autonomous human beings. This very question of whether it is ethical for a parent to alter their children (and their children's children, by virtue of germline manipulation) is a result of this improved (though still imperfect) uplifting of children's rights. The recognition of children (and possibly fetuses, at various stages of development) as "people" has led, in some cases, to things like children suing a parent for what they perceive to be "wrongful birth" (based on the fact that a child was born with severe disabilities -- I think it is absolutely terrible that anyone would be so unhappy with their own existence as to seek damages for the mere fact of being born!), and deliberations over whether someone who injures a pregnant woman must be also penalized for any injury to the child she carries.

Smolensky noted that mothers are sometimes held liable for behavior during pregnancy that affects the developing fetus. She suggested that perhaps genetic enhancement of a fetus would fall outside the realm of "lifestyle choices" on the part of the mother, since changes made to the genetics of a fetus in no way impact a woman's ability to live any particular lifestyle while pregnant.

Given that there are already people who attempt to sue their parents as a result of pre-birth injury, but also in response to having been born in the first place, it does not seem likely that a coherent definition of a legal right to an unaltered genome is possible. I would suggest that genetic enhancement is only one of many variables that could affect a developing child, and that this variable is not fundamentally different from any other environmental or intentional action taken prior to a child's birth -- therefore, it is not a question of whether the developing child has a "right" to an unaltered (or altered) genome but a question of what is or is not good for the child. Obviously, many societies have taken steps to protect children and describe the legal implications of being part of a family (particularly when there is dispute between family members requiring mediation from an outside agent).

I would agree with Smolensky that the question of whether or not to enhance at a particular stage of development is a moral question rather than a legal one. There are plenty of moral caveats that ought to be applied to "enhancement" -- in my estimation, despite the subjectivity of the idea of an enhancement, there are indeed some germline interventions that I would be more ethically okay with than others. For instance, I cannot see any justification for making a child taller than s/he might have been otherwise, but I can certainly see something like "increased resistance to cancer" as being quite justifiable, assuming that Smolensky's condition of "safe and effective" holds.

However, Smolensky's assertions and conclusions based on her piece seemed to me to be overly dependent on the conditions set forth at the beginning. It is, after all, highly unlikely that a "safe and effective" guarantee could ever be applied to something like genetic manipulation -- and this, in and of itself, would complicate the legal situation beyond the question of whether a supposedly innocuous or beneficial modification could be contested by a person who grows up with such a modification. If, for instance, a supposed "enhancement" were applied that would make a person resistant to skin cancer, but had the "side effect" of causing infertility or chronic pain conditions, then the legal question might become more complex, and there is really no way around the moral question of whether someone should take the chance of applying a modification that may grant better health but may also result in detrimental effects.

Dr. Martin Gunderson's presentation focused on the notion of consent, particularly the incoherence of the concept of consent as applied to a fetus or to "future generations". He introduced himself as ideologically Kantian -- specifically, a "nervous Kantian". I would take "nervous Kantian" to indicate a support for Kantian notions of autonomy (and that a truly autonomous being will act morally), but a concurrent caveat that all endeavors which pose moral questions ought to be undertaken with caution.

Consent, as Dr. Gunderson described it, is a contractual component of interactions that can alter the normative relation between individuals. Examples provided of this include the fact that consent is what distinguishes invited entry from trespassing, and gift-giving or borrowing from stealing. Objecively, the same physical outcome ensues in each case -- whether stolen or borrowed, an object passes hands between people, and whether invited or not, a person who enters a house still ends up inside. Consent necessarily involves two parties, both of which are capable of some sort of communication and negotiation. If one party has no awareness of the other, consent is impossible -- though it is not necessarily the capacity for consent that determines the moral flavor of an action. (An infant cannot consent to life-saving heart surgery, for example, but most would agree that performing such surgery would be more ethical than not performing it)

I agree that it is indeed incoherent to make decisions pertaining to enhancement based on whether future generations can, or would, consent or refuse a particular thing. What is more important to consider is principle -- Gunderson suggested an "enhanced notion of Kantian autonomy" as a guideline for making decisions. We should not put up absolute barriers to enhancement, since there may indeed be cases where such a thing is justified, but caution should always be in order.

During the Q&A session, someone astutely pointed out that perhaps doctors would be a more likely and logical target of lawsuits, and that "informed consent" on the part of a parent seeking genetic modification to his or her child might not be possible. Given the fact that very few patients nowadays tend to know exactly what their doctors are doing to them, and why, this is indeed an important consideration for future medical technologies and is likely to be an important consideration well into the indefinite future while so few patients are sufficiently "well informed" (unless they devote a significant portion of their time studying the medical treatments they need, or are likely to need -- which I know, from personal and secondhand experience, can result in a case where the patient actually knows more than the doctor about a particular thing.)

1:00 PM - 2:45 PM - Celebrating Morphological Diversity

This was a panel moderated by Dale Carrico, Ph.D.. Panel members were Robin Zebrowski whose talk was entitled "Every Body is Already Different: How The Myth of a Standard Body Feeds The Myth of an Authentic Self", Anita Silvers, Ph.D., who asserted "The Right Not To Be Normal as the Essence of Freedom", Shannon Ramdin, who discussed "Transhumanism and the O(/o)ther", and Jess Cadwallader who discussed "Suffering, Bodily Tolerances, and 'Enhancement' Discourse".

This panel discussion was definitely a highlight of the conference -- I have noted some possible areas of tension between transhumanism and disability rights, however, I am firmly convinced that people who lie outside statistical norms in whatever respect, be it mental or physical, have something in common regardless of whether they were born a certain way or decided to evolve in a certain manner over the course of their lives. That is, persons with different ability sets (whatever the reason) and different morphological features ought to be able to coexist in a just, ethical, and inclusive society. As a side note, I am somewhat disturbed when I come across writings by those who dismiss transhumanists as "loonies" simply on the basis that we / they would consider modifying our bodies to work differently, or look "more different" than several standard deviations away from the typical. "Because it would look like something I'm not used to" is not a valid argument, and harkens back to times when people considered "too ugly" or "disfigured" to appear in public were locked away or relegated to carnival sideshows.

Throughout Robin Zebrowski's talk, I found myself agreeing wholeheartedly -- though the ideas presented in her paper were most definitely important and perhaps not commonly spoken about around your average American dinner table, she did not use any terminology that necessitated consultation of Wikipedia prior to writing this commentary. Not that I mind looking up things in Wikipedia, or any other reference -- I am always happy to learn -- but there is a legitimate concern raised by some that at times, progressivism and transhumanism tend toward jargon-heavy "Academese" and if we cannot put the necessary ideas into more common language, bringing these ideas to the General Public will take far longer than perhaps it should. (Personally, I think we really ought to be teaching schoolchildren better critical thinking skills and offering them the chance to study logic and philosophy starting at the elementary level -- but education reform is another topic entirely). I think it was Wesley Smith who raised the issue of "Academese" during the Q&A session of this panel, however, he'd missed Zebrowski's talk.

Ms. Zebrowski got everyone's attention at the beginning by quoting Francis Fukuyama and his notion of "human essence". I agree with Zebrowski, and others, that there quite seriously can be no coherent definition of "human essence" that at the same time is inconsistent with the inherent diversity of humanity. Zebrowski sought to, like several speakers, offer a more rational definition of human nature or essence based on the wonderful truism that there is, absolutely, no such thing as normal. Despite alarmist fears, there is no reason that the introduction and proliferation of modification technologies would lead to a society in which everyone sought to become the ideal of "white male strength and mobility". That is, enhancement should not be thought of as an inevitable means to the creation of a "superior superclass".

Critics of enhancement, Zebrowski noted, contradict themselves when suggesting that human nature is independent of body shape (that is, people are people regardless of hair color, eye color, number of limbs, other morphological features, etc.) but then at the same time asserting that changing the body (or the genome) violates "human nature". In the "things I didn't know prior to hearing this talk" category was the fact that each individual has around 100 mutations that his or her parents did not have. At which point can critics say that a human is human based on any physical or genetic characteristic, or set of characteristics? If there is no standard body, and no standard genome, and no standard set of abilities, who is to say that adding additional diversity to the mix through the exercise of conscious volition threatens the integrity of anything at all?

Zebrowski's talk was ideologically compatible with something I've heard Dr. James Hughes mention in several contexts -- the idea of "human racism" and the notion that revulsion at certain gene configurations and morphological features is really no different from the past qualms many people had about "racial mixing" and "racial purity" based on such things as skin color. I would wager that those who argue that we ought to keep the "human race" pure in some sense have not thought very carefully about what they are saying. I can see the point that if we're not careful and proceed in an overly ambitious manner with trying out all sorts of modifications, we could end up making ourselves extinct -- but this doesn't have to happen, of course, particularly if the transhumanist goal of achieving greater moral wisdom as we enter the future comes to pass. One thing I think the "human racists" are missing is the fact that nobody is advocating compulsory enhancements for anyone -- the idea is that people should have the autonomy to choose their own form and function based on the goals they have for themselves. And suggesting that people with "enhancements" of any sort would be polluting or threatening the human race by passing any changes down to their children is as ethically questionable as suggesting that persons with disabillities have no right to reproduce if they so desire.

In closing, Zebrowski noted that the fact that no standard body or self exists does not mean we have "nothing". Rather, human nature and the identity of a person is rooted in the acts, choices, activities, and goals of that individual. This definition of identity appeals to me on many levels: not only is it independent of morphology, it is ethically consistent -- inclusive of individuals who choose certain modifications and individuals who do not.

The next talk, delivered by Dr. Anita Silvers, was a delight to listen to. I was particularly interested in hearing this talk when I read the program, and its title -- "The Right Not To Be Normal as the Essence of Freedom" -- is actually one of the things that compelled me to attend the IEET conference in the first place.

Dr. Silvers began by noting that biological properties are not inherently strengths or weaknesses. This is an extremely important concept to take note of in both the transhumanist and disability rights arenas. By recognizing the simple fact of the neutrality of biological properties and differences (and the potential for different attributes to optimize the individual for particular environments or tasks), one allows for the coexistence of a dramatically diverse range of persons.

Dr. Silvers noted a particular example -- that of artificial feet -- to highlight the cognitive dissonance inherent in both disability discrimination and enhancement-based discrimination. In the past, athletes were sometimes barred from competing in olympic events on the basis that amputees with artificial feet would be at an inherent disadvantage due to the "clunkiness" of these feet. However, now the situation is approaching a reversal in that some athletes are finding that their adaptive technology -- more advanced artificial feet used during running or bicycling -- has the potential to disqualify them from some events on the basis that their assistive technology confers too much of an advantage. This situation is a clear example of how the so-called "natural" is glorified for no particular coherent reason, and people who have chosen or received technologies that enable them to reach their personal goals could be excluded from attempting such goals on the basis that they've put themselves outside a sort of random lottery. Many people still seem to put a ridiculous mental barrier between notions of non-technological "enhancement" (such as a nutritious diet and an exercise or training program that increases one's running prowess) and technologically-based interventions.

Disqualifying a runner from running on the basis that s/he makes use of assistive technology makes as little sense to me as taking away the keyboard communication device of an autistic / mute person and not allowing them to communicate unless they can use speech. In short, discriminating against people who achieve their goals through self-directed or nonstandard means sets a dangerous precedent: that of forcing people into a narrow range of paths to particular goals.

Dr. Silvers also made what I consider to be a very important point regarding individuals described as disabled, connecting this point with the notion of the neutrality of biological characteristics. In an example I particularly liked, she related a story of a man who sought work as a physical therapist but who ended up having some social difficulties in one phase of his endeavor. These difficulties were addressed and discussed, and it turned out that the man "probably had Asperger's". He was sent to work with severely "multiply handicapped" children, and ended up getting positively glowing performance reviews. Apparently, many people not on the autistic spectrum can be extremely uncomfortable working with such children -- only this man, on the spectrum himself, saw no qualitative difference between these children and anyone else. (This is not to say that all nonautistic people are discriminatory or that all autistic people are naturally open-minded, but in this case the therapist's supposed "disability" made it possible for him to perform a job, very well, that few people were capable of doing even an average job at).

This story reminded me of how I immediately approached a girl in my preschool class, trying to be her friend. I knew she was Deaf (the teacher explained to us a bit about how her hearing aid worked) but apparently she had some sort of facial "deformity". I had absolutely no idea that there was anything remotely different about her face, until one of my parents noted what I think was a newspaper article describing how this little girl was undergoing surgery to "fix her face". I'd never perceived anything "wrong" with her face. Despite my own social issues and atypical perceptual style, I do feel strongly that I am optimized for certain tasks and abilities. It's good to know that some people, like Dr. Silvers, agree with this assessment.

Dr. Silvers spoke negatively of programs that seek to "raise statistical averages" to the detriment of individuals. This makes me think of how my high school had a program to send "troubled" students to a different school under the auspice of giving them a "more appropriate environment", but then this same school would claim a "99% graduation rate". There was nothing inherent about the school that encouraged students to stick with it and graduate rather than dropping out; it was just that they identified potential "dropouts" and quickly shuffled them off somewhere else before they could drop out and hurt the average. This sort of policy makes it all the more difficult for atypical, disabled, differently-enabled (or whatever word one finds most appropriate) individuals to find their niche in a particular environment, whether it be academic, career, or social. Diversity (which I would interpret as diversity that is acknowledged and "out in the open"), according to Silvers, discourages eugenics by encouraging accomodation of and recognition of the value of different traits as applied to particular roles.

Eugenics programs fail the pragmatic test by forcing biological properties to be sorted into "strengths and weaknesses", when this is a line that cannot be easily or realistically drawn -- except possibly in the case of sheer viability. (That is, I do not have any moral problems with modifying a fetus which would certainly die without such a modification on the basis that being alive is better than being dead!).

Dr. Silvers concluded by noting that many debates surrounding enhancement and disability assume that humans as a group are naturally competitive, or that competition is always (or should be) the Thing To Worry About when choosing one's life goals or bearing offspring. While there is certainly some competition inherent in human interactions, there are also numerous examples of cooperation. Living should not be about trying to be "better" than others or worrying that one must give one's children a "competitive advantage", but rather, thinking in terms of the potential for each person to fill a unique role and pursue unique goals.

Shannon Ramdin spoke next -- her presentation made extensive use of words like "hedgemony", which I admit made it somewhat difficult to follow. This talk was cautionary in the vein of Dr. Nigel Cameron's, at least in the sense of warning against technology being used as a means to power and having this power concentrated in a group known for its tendencies toward corruption. Ms. Ramdin noted that despite initial impressions of the Internet as being a sort of great equalizer, at present the Internet is only reflecting the lives of people who can afford computers and Internet access. She cautioned against assuming inherent goodness in technologies that "came out of" white male hedgemony and dominant paradigms.

A critique of Donna Haraway's Cyborg Manifesto was offered on the grounds that this writing exhibited excessive levels of "techno-optimism". Not having read the Cyborg Manifesto myself (something I will certainly need to remedy in the near future), I cannot comment specifically on the optimism or philosophies described in this essay, but I think I have a decent enough understanding of what "techno-optimism" might have meant in the context of Ms. Ramdin's presentation.

One point that I agreed wholeheartedly with Ramdin on is the fact that in order to succeed as a "broad ideological movement", transhumansim must necessarily embrace the "political paradigms of non-dominant groups". As much as I agree that periodic reminders of the existence of non-dominant groups are essential to any ideological movement that seeks to be inclusive of all conscious beings, I would argue that transhumanism is already quite cogent of the existence of, and right to exist of, non-dominant groups. After all, transhumanism is a non-dominant group. And as a person who is (a) female, and (b) legally and medically considered "disabled" to a certain extent (and I acknowledge that in some environments, such as noisy pubs or behind the wheel of a car, I am obviously and undeniably disabled), I have experienced nothing but benefit from the technologies I have chosen to make use of.

Computers, and the Internet especially, have enabled me to an extent that would not otherwise be possible. Regardless of whether any wealthy white males might be responsible for the invention of some technologies I benefit from, in no way does my participation in discussion online support the notion of a dominantly white-wealthy-male transhumanist paradigm. While it is important to keep historical records as to how certain technologies came to be, it makes little sense to me to dwell on the social origins of certain pices of technology. Though some degree of inequality persists when it comes to access to technology, one cannot deny the fact that basic computing functionality is becoming more and more accessible. And it doesn't really matter who invented what or where it came from -- the innovative tendencies and imagination of humans makes it possible for many people to look at something that exists and use it for something that its creators possibly never intended. Once an object or technology comes into being it is neutral, a tool, that people can and should be able to use without being locked into a particular notion of how that tool should be used based on its origins.

The accelerating rate of advancement in computing technology means that there is a lot of perfectly functional, but unused, hardware lying around (I've got a fair amount of it in my apartment). It's difficult to give this equipment away. One social program I've thought might be a tremendously positive investment would be a program to collect and distribute this recently-obsolete equipment to those who cannot afford computers. Some might suggest that the imbalance of power might still remain between those with the fastest, top-of-the-line computers and those with slightly older models, but surely, this imbalance would be much smaller. (Of course, there are still people in the world lacking electricity hookups and phone line access and basic sanitation, but my suggesting a computer-distribution project does not in any way imply that other, severe, social and political imbalances cannot and will not be addressed in parallel. One mistake I often encounter in assessments of up-and-coming technologies is the notion that things need to happen in a particular order, or not at all. This argument basically amounts to a potential mandate for people's career choices to be made for them on the basis of some organization's or government's idea of what the world needs most. This is both undesirable and unnecessary.)

I do not mean to come across as unduly critical of Ramdin's presentation -- I think it is extremely important for people to continue providing critiques and caveats of transhumanism, whatever their interpretation of transhumanism may be. Without these caveats and critiques, the potential for intellectual laziness and an inability to respond cogently to future critiques could be a danger. I do not believe that any philosophy or notion is beyond and above criticism, and reminding would-be enhancers, transhumanists, and the like that we must remain aware of the potential to hinder equality rather than foster it and take necessary steps to prevent this.

The final speaker on this panel was Jess Cadwallader, who focused on the subjectivity of suffering and the difficulty of using the concept of suffering as a basis for drawing ethical conclusions. Ms. Cadwallader pointed out that while suffering is often considered to be culture-independent (i.e., "natural"), the very category of "natural" is itself a construct defined and described within the framework of a culture. One astute observation here was that culture tends to define what can be observed and what can be expressed. I would suggest that this aspect of culture is part of what makes it difficult for some people to accurately and convincingly express themselves -- their experiences simply lie beyond current cultural constraints of language and associated vocabulary and even appearance.

When something happens that is not immediately recognizable, cultures tend to sort this unfamiliar happening into a pre-existing category that may in fact be only superficially appropriate (and therefore wholly inappropriate). Hence, some types of suffering may be completely missed or ignored, while other things might be interpreted as suffering when, in fact, they are not. I imagine that this phenomenon is responsible for some of the discrimination experienced by autistic people (who are often assumed to be lacking or suffering due to atypical body language or preferred activities) and the difficulty some injured or ill people have in obtaining appropriate pain management ("You don't look like you're in pain!").

Ms. Cadwallader introduced the idea of "Power Knowledge", and discussed three components of this:

1.) The body as "project": something to be worked on such that it expresses what the individual feels to be his or her true self. (An example that comes to mind here is that of a transgendered individual who undergoes surgery and hormone treatments such that the outer form is coherent with the inner form).

2.) The "Teleological Life Narrative", or tendency of people to see their lives as goal-directed.

3.) Notions of pathology, difference, and deviance.

Ms. Cadwallader suggested, as an example, "shortness" as a property that might conceivably result in the suffering of a child. However, depending on the cultural climate in which a child grows up, shortness might be considered advantageous or disadvantageous, beautiful or ugly. For a parent to make the choice of, say, height enhancement on the basis that shortness will result in suffering opens up quite a realm of potential debate. By refusing to bring a person into the world who will fall within a certain percentile of height, the percentile itself will be shifted over time. The ethical question here is primarily one of whether it is more dangerous to bring a person into the world knowing that person may suffer for their deviance from a cultural norm, or whether not bringing a statistically-atypical person into being promotes a society that holds ever-narrowing views as to what sort of person is allowed to exist.

I personally think there is no question that "normative" or primarily mainstream-competitive "enhancements" (such as height alteration or certain sorts of neurological alteration) would be a terrible thing -- though some individuals may suffer for being different, it seems that any parent who seeks to produce an average child who will somehow be granted immunity to prejudice on the basis of having an appearance and ability set that does not offend the sensibilities of the dominant cultural group is taking the "lazy" way out. With a truly supportive family, there is no reason that anyone has to suffer, regardless of how different from supposed norms they may be. I often encounter a similar argument in discussions of autism -- some parents would remove their child's most harmless quirks if they had the choice, on the basis that these quirks prompt bullying -- this seems extremely misdirected to me, since it seems that it should be the bullies who are chastised and urged to change rather than their victims.

Ms. Cadwallader noted in closing (or at least, where my notes on this presentation end -- this segment of my article may be expanded upon if I can find the audio for this presentation) that it is important to acknowledge that freedom, choice, health, and notions of 'enhancement' occur within a culture. And this presentation brought to light the important caveat -- one I agree with more so than other caveats presented during this conference -- that we must take note of how contemporary procedures are being used toward the ends of "normalisation" and be wary of supporting philosophical definitions of suffering that encourage homogenization.


Robin Zebrowski said...

Anne - thanks for the marvelous write up (not just of my talk, but of the entire conference!) Quite an undertaking! I'm lucky when I manage to write up a review of one or two talks - you've covered the entire conference so comprehensively!

It was nice to meet you (and I'm still digging on your evolvefish's wrench).

AnneC said...

Robin: Wow, thank you for stopping by! That was indeed me with the wrench-fish; I am all for responsible and progressive tool use. :)

Doing the writeups was great fun -- I'm glad to have finally finished part 5 for the sake of achieving a complete set (I'm big on follow-through!) but believe me, this sort of writing is the stuff I've been doing my whole life.

It is always amazing to me when people thank me for writing because it's kind of like breathing: something I'd do even if I had no Net connection. I just figure that hey, I'll write, and post it, and if someone ends up getting something out of it, all the better. But you are very welcome. =D

Aaron said...

Amazing blog ! Couldn't stop reading once I started.