Wednesday, July 25, 2007

Fifteen Years From Now...

IEET colleague Dale Carrico has seen fit to tag me with something called the "Futures" meme. The description of this meme, and my response to it, appears below.

So here's the task: Think about the world of fifteen years hence (2022, if you're counting along at home). Think about how technology might change, how fashions and pop culture might evolve, how the environment might grab our attention, and so forth. Now, take a sentence or two and answer...

• What do you fear we'll likely see in fifteen years?
• What do you hope we'll likely see in fifteen years?
• What do you think you'll be doing in fifteen years?

There are no wrong answers here -- only opportunities to surprise, provoke and amuse.


Here are my answers:

• What do you fear we'll likely see in fifteen years?

EDIT: Emphasis here is on the word "fear". This is a lot of gloom and doom, and represents a sort of "worst case scenario" in my mind. It does not represent what I actually think the world is going to look like in fifteen years.

1. Too little progress in terms of improving the health care system -- e.g., people still dying of easily-preventable diseases, and no real strides made toward making it possible for people to keep living healthily beyond their eighth or ninth decades.

2. Continued suffering due to malnutrition and lack of proper sanitation, lack of clean water, etc.

3. Even greater disparity between rich and poor persons in the world.

4. The return of deadly epidemic diseases due to vaccine-phobia bordering on fundamentalism.

5. "Science" appearing mainly in the context of something to be disdainfully dismissed in "Creationism 101" classes across the nation.

6. An even greater move toward authoritative "normalization" and lack of respect for the morphological freedom of all persons (particularly those who are atypical in some way).

7. Continued overuse and inappropriate use of short-sighted utilitarian reasoning, by people who fail to understand that freedom to self-determine is PART of utility, and that any attempt to engineer reality from the "top down" perspective (as if it were some sort of gated community or theme park) is frankly ludicrous.

8. People persisting in endless circular arguments over the existence (or lack thereof) of free will.

• What do you hope we'll likely see in fifteen years?

1. A more flexible, inclusive society that recognizes the inherent interdependency of sentient life forms and acknowledges the value of diversity.

2. Improvements in the environment; e.g., cleaner air, fewer dangerous emissions, more sustainable agriculture, etc.

3. Some tangible steps made toward effective longevity medicine.

4. Better public transportation.

5. People getting a clue about how to distribute resources effectively, thereby narrowing standard-of-living gaps around the world.

6. Regenerative medicine -- e.g., therapies that allow people to grow new organs from their own tissues that will not be rejected by the body.

7. Improvements in education: recognition of multiple learning styles, accessible classrooms, and acknowledgement of bullying as a serious problem rather than just "what kids do".

8. Free Internet you can access from anywhere.

9. A second season of Firefly. (Yes, I know about the anachronisms. No, I don't care. I just want to see more of people flying around in a starship making snarky remarks at one another. And fighting space cannibals.)

10. That if anyone does manage to build a self-improving artificial intelligence by that point, it will be of the sort that won't deconstruct you into your constituent molecules in the service of its quest to fill the universe with Snausages, Pokemon figurines, or whatever the popular representative misguided supergoal is at that point.

• What do you think you'll be doing in fifteen years?

1. Continuing to research and write about things that I find to be fascinating, important, or both. Hopefully writing a book or two.

2. Living in an actual house (as opposed to a rented apartment). With cats. And solar power.

3. Building cool robotic devices in my workshop.

4. Growing tasty vegetables in a backyard garden.

5. Learning and interacting on whatever incarnation of the Internet exists in 15 years.

6. Spending time with my loved ones: family, friends, aforementioned as-yet-hypothetical cats.

7. Feeding my goldfish, who will no doubt be the size of a beagle in 15 years if he keeps up his current rate of growth.

8. Continuing to participate in key areas of advocacy as I am able to. Regardless of what nifty technologies arrive on the scene, political struggles are likely to continue indefinitely, and I plan to continue at least attempting to pay attention. I imagine that I'll still be involved in advocating for the "right not to be normal", as well as the right to be old without people telling you that it's your duty to kick off (a la "Logan's Run").

9. Engaging in a hobby that involves something that probably hasn't even been invented yet. I mean, I never could have predicted podcasts a mere three years ago...who knows what will come about in fifteen years?

I don't meme-tag people. But anyone who wants to post their responses (on their own blog or otherwise) is welcome to.

Sunday, July 22, 2007

Longevity Future Salon: Embracing Science, Ethics, and Life in the Bay Area

The July 20, 2007 Future Salon meeting was titled, The Science and Ethics of Longevity Research. This is Part 1 of a summary of that presentation as well as commentary and supplemental information regarding the topics and concepts discussed. Commentary, of course, represents my own views and responses to the presenters' points, not the views of the presenters.




When I entered the tidily furnished, modern cafeteria of Palo Alto's SAP Labs facility, I still did not know what to expect beyond a talk between biologist Aubrey de Grey and bioethicist William Hurlburt. I did not know if the audience would consist primarily of life-extensionists, death apologists, or people who were simply curious, and I did not know what kind of dynamic would play out as the evening moved forward.

Attending "future-themed" events (for lack of a better term) is something I am fairly new to, and in general I tend to approach new places and experiences like a cat: inching about the perimeter of the area, trying to get a sense of the space at hand and the shapes within it, and eventually finding a quiet corner to settle into where I might observe the goings-on around me. I recognized a few of the other early arrivals and offered greetings to some of them, but mostly just looked around, took random photographs, and nibbled on raw vegetables from the refreshment table.

Eventually, I found myself a nice table by the window where I could set up my laptop and stayed there for practically the rest of the evening. On a whim I decided to see if there was any wi-fi in the area, and lo and behold, SAP had a "guest" network connection. This thrilled me more than it probably should have -- for some reason, I get schoolgirl-excited at the mere prospect of being able to walk around with a portable computer and (where possible) simply turn it on and without so much as a wire, be connected to the most extensive information-transfer medium in known existence. There was a kind of crisp, flowing beauty in being able to log on, upload a photograph showing the very room I was actually in, and post it to the Web within the space of a mere few minutes.

Soon, the room filled up with more people than I'd expected to see at such an event. I was very impressed by the turnout, and the attendees were very civil and respectful of both the facility and the event itself (which is always nice to see, considering one of the reasons I generally avoid crowds is the fact that large groups of humans tend to generate unpleasant, loud, screamy, emergent properties).

An informal audience survey at the beginning of the event revealed what looked to be a slight preference for hearing more about the science side of things, but ethics ended up being the main focus of the evening anyway. This is by no means a complaint, though -- while the dissemination of more good, solid, technical information about longevity science would indeed be welcome, the evening's focus was quite appropriate given that the primary discussion was to occur between a biologist (with an understandable interest in bioethics), and a bioethicist. The meeting was framed as a "debate" of sorts, and (generally speaking) when it comes to science, you don't debate it to prove that it works, you do it and see if it works.



Aubrey de Grey began by noting two mutually exclusive positions (associated with science and ethics) that tend to come into play when people state opposition to longevity research:

Position 1: "I refuse to think seriously about whether defeating aging is feasible, because it is clearly not desirable."

Position 2: "I refuse to think seriously about whether defeating aging is desirable, because it is clearly not feasible."

Two argumentative frameworks tend to be associated with the above two positions, according to de Grey: the "Argument from Superficial Authority", and the "Argument from Personal Incredulity".

My impression is that people taking Position 1 most often tend to argue from superficial authority. I would imagine that this includes people who invoke "Nature", the words of conservative bioethicists, or possibly their deity of choice when attempting to explain why seeking to extend the healthy lifespan is a bad idea.

People taking Position 2, on the other hand, tend to argue from personal incredulity -- that is, they consider it a foregone conclusion that human lifespan is basically fixed at a particular point, and that our chance of moving this point outward is so small as to be functionally negligible.

In order to at least begin to address the above positions and their supporting attitudes, de Grey suggests demystifying the task of actually achieving longevity medicine. This is where the majority of the "science talk" took place during de Grey's presentation -- the "simple logic" of Life Extension Escape Velocity (which is probably quite familiar by now to most who have been following longevity science for any length of time) implies that as time goes by, it will become possible to fix more and more of the damage that accumulates as a person ages. Simply put, fixing half the damage will allow a person to live to the point where it is possible to fix 3/4 of the damage, then 7/8 of the damage, and so on, and so forth.

It is worth noting here as a reminder that the notion of "escape velocity" is not new. A 1978 article in Future Magazine described the concept as follows:

...if you are in your 40s, you will probably not be hauled off­stage by the Grim Reaper in 2008, as the insurance companies are betting. You will probably still be here in 2078. And if you are in your twenties or younger, you have a good chance of being around until 2098.

But if you will be around that long, what will happen in the meanwhile?

Even if the current predictions of such learned scientists as Dr. Segall, Dr. Prehoda and Dr. Komarov — projecting life spans of 400-1000 years — are a generation premature, two generations premature or even three or four generations premature, still, you have a good chance of being here when these dreams are achieved.

In short, even if we can only double lifespan in this generation, we will still be around when further breakthroughs will probably triple it, quadruple it or raise it into millenniums.


It is somewhat sobering (as it should be) to read articles like that quoted above now, nearly 30 years later, and realize that little progress of the sort imagined by 1970s futurists has come to pass. In some respects this is certainly a good thing -- I mean, I don't really see myself being happy in a silver unitard. But I don't doubt that there are probably a fair number of "old school" cryonicists and other longevity-oriented folks out there who have been around to see a lot of change in the world, yet little in the directions that indicate the probable emergence of life extension medicine sooner rather than later.

However, the good news is that the Escape Velocity concept is now in a far better position to be realized than it was 30 years ago -- for the simple reason that now, people are actually making tangible efforts toward achieving the first significant longevity milestones. People unfamiliar with the subject of life extension are likely to assume that what is being sought is a "magic bullet" approach, when this is not actually true at all -- age-related health decline is an extremely complex phenomenon that will require complex, incrementally applied solutions. (On this subject, I was pleased to see a lovely color version of a particular graph that, if I recall correctly, was brainstormed into existence at the meeting I attended back in January with various members of the Methuselah Foundation and other interested parties.)

de Grey continued the science discussion by noting the fact that metabolism is the primary path by which damage occurs, and that this damage is what eventually leads to recognizable pathology. He also mentioned the possible utility of biological simulations in predicting the efficacy of treatments applied to restore various aspects of health to people of various projected ages.

After that, the more practical discussion gave way to the more philosophical (I am guessing that de Grey wanted to have at least some reasonable longevity justifications out on the table prior to Hurlburt's speech). The Ethics portion of de Grey's discussion began (at least according to my notes) with his noting of some of the key psychological challenges to longevity research:

- People tend to fear the unknown (and a world in which age-related death is no longer a certainty definitely qualifies as an "unknown").

and,

- It used to make sense to engage in apologism for the nastier bits of the aging process (because we honestly didn't have much hope of actually doing anything about it).

In response to these challenges, it was suggested that we ought to apply reflective equilibrium to the problem of ageism (which is really a large part of the root of opposition to longevity medicine), and that ethics ought to be revealed as a "people skill". (I really appreciated the second point being made, because all too often it seems that very superficial criteria are used in order to determine "people skills", sometimes at the expense of acknowledging the ethical aspects of a situation.)

de Grey also made the point that the job of a bioethicist is to "provide arguments that people in general, not just bioethicists, will find persuasive." This was a good point to make, considering that it is very easy to become so immersed in one's own professional jargon that one forgets that the result of ethical explorations must be, at some point, applied to and tested against the real world (in a manner that can, and will, affect real people).

The "wisdom of repugnance" argument was also invoked here, in the context of suggesting that visceral reactions sometimes do lead to preferential moral positions. After all, quite a few things that did not used to be considered "repugnant" now certainly are; examples given were slavery, mass murder of indigenous peoples, non-universal suffrage, and homophobia. All these things are now fairly widely condemned, when they used to be accepted as a matter of course. Applying the "wisdom of repugnance" to the subject of longevity, de Grey asks whether age-related death might perhaps become repugnant at some point.

The answer to this query depends on whether people are willing to engage in a general move toward valuing life more than they did in the past. Some trends do seem to point in this direction; de Grey cites the less-frequent incidence of war between developed nations in recent years as suggestive of greater valuation of life.

However, I am personally a bit more torn on whether most people are actually moving more toward valuing life than away from this position -- sometimes it seems as if the opposite is actually true, particularly in the cases of elderly and disabled persons. Certainly, it is possible that a majority of persons will come to the position of always giving the lives of existing persons the benefit of the doubt, but I think we've got a long road ahead in this regard.

de Grey also brought up the commonly-cited point that "there is no difference between saving lives and extending lives". I will not summarize this point here again, since I have covered it in the past.

Overall, de Grey's opening statement, while it seemed slightly hurried (understandable, given the time constraints), did manage to portray longevity research as nothing more than the logical extension of medicine to persons of all ages, not just the young. I did not really learn anything I didn't already know, or hear any pro-longevity arguments I'd not encountered in the past -- but I certainly enjoyed seeing a room full of people (there must have been close to, if not slightly more than, 100 in attendance) who appeared to mostly support the pro-longevity position. As such, I figured that the next presenter, William Hurlburt, would have a very tough time defending his more conservative position to such a crowd.

(Continued in Part 2)

Longevity Future Salon: Of Symphonies and Simplification

The July 20, 2007 Future Salon meeting was titled, The Science and Ethics of Longevity Research. This is Part 2 of a summary of that presentation as well as commentary and supplemental information regarding the topics and concepts discussed. Commentary, of course, represents my own views and responses to the presenters' points, not the views of the presenters.


William Hurlburt took the podium following de Grey's initial statement. As predicted, he expressed his perception that yes, indeed, he had the more difficult job in asserting the "con" side of longevity research to the gathered crowd.

Hurlburt went straight into ethics and philosophy, asking first of all, "Is more always better?" (particularly when it comes to "life itself"), and then invoking notions of balance, wholeness, and coherence as applied to life (and death's role in shaping it). He brought up the potential social impacts of life extension by lightly pointing out that phrases like "life sentence" and "until death do us part" would take on very different gravity in a society of very long-lived individuals.

He then tried to make a poetic point about life as analogous to a symphony, and asserted that perhaps extending life (any part of life) would disrupt this symphony or somehow make it less meaningful than it would have been otherwise. I tried my best to take this argument seriously and consider it from an ethical and philosophical standpoint, but in all honesty (and no disrespect to Dr. Hurlburt here), all I could think was, "Wow, he's using the Depressed Buffy Argument!"

(If you haven't seen the Buffy The Vampire Slayer TV series through the sixth season, you might want to skip over the next few paragraphs, if you plant to watch the series and you're the sort to care about spoilers. Consider this fair warning!)

See, right at the end of Season 5, Buffy (the title character and hero of the series), dies as a result of leaping into a mystical portal while in the process of saving the world from a chaotic dimensional rupture. She is brought back to life at the beginning of Season 6 by her well-meaning friends, who feared that she might have been trapped in a "hell dimension". However, it turns out that Buffy was not in a terrible place at all, but in a place where she felt "warm, loved, and complete". Being torn from this place of completeness and certainty sends her into a deep depression. She feels as if her life is now meaningless, that she is simply going through the motions of her daily activities. And she resents her friends for bringing her back to such a life -- Buffy feels that the "song" that should have comprised her life has been taken from her and left her with nothing but confusion and emptiness.

This is what Hurlburt's "symphony" argument reminded me of; he seemed to be making a very similar assertion about the effect that very long lives might have on people. But, like "Depressed Buffy", Hurlburt fails to acknowledge that life is not about some grand story arc imposed upon you from the outside so much as what you choose to make of it, and find within it. At one point during the musical episode of Buffy (which isn't nearly as ridiculous as the premise may sound), another character sings the following in response to Buffy's lament about the disruption of her "song":

Life's not a song,
Life isn't bliss,
Life is just this --
It's living.


Given the existentialist leanings of series creator Joss Whedon, it seems very likely that these few simple words are actually intended to express a very powerful truth about existence: that life is not a song, but something else -- something that is, rather, an end unto itself. Buffy did eventually come to terms with this truth and begin to appreciate the world once more -- perhaps even more deeply than she did prior to her death, because her viewpoint was less naive and better informed regarding the true lack of absolute certainty in the universe. When even death cannot be relied upon as either certain or final, a person is thrust into a position of having to engage in some of the most difficult philosophical explorations known to humanity.

Hurlburt made much of the notion that to seek life extension is to express a kind of "spiritual immaturity" -- as if somehow, those who advocate for effective longevity medicine simply have not "faced" their mortality and its implications. While I can see how he might think this, given the fact that most human myths and archetypes involving longevity end with a moralizing lesson about being careful what you wish for, I would venture to suggest that not being able to conceive of a meaningful life without age-related death is actually more indicative of "spiritual immaturity" than actually being able to do so.

Overall, it seems that Hurlburt confuses the naive "immortality quest" (characterized by an outright fear of death, and little reflective content) popularized in myth and legend with the more serious, pragmatic, deeply-thought-out desire for longevity medicine shared by the majority of the healthy life extension community. I haven't taken a survey, but I would imagine that most longevity advocates have, in fact, "faced death", stared into the void, meditated to the point of ego-dissolution, or done any number of other things that have allowed us to observe the starkness and majesty of existence and our own frail, vulnerable presence within the context of the whole.

When I was about 20 years old, the notion of mortality actually hit me quite abruptly -- I was reading a book at the time that claimed that humans find it impossible to imagine their own non-existence, and because I like a challenge, I attempted to imagine just that. I've learned subsequently that this sort of exercise is similar to some Buddhist practices, but I am not a Buddhist nor am I particularly well-versed in that system, so whatever I did seems to have been purely the result of experiment and chance. But regardless of how I did it, I was actually able to (briefly) "peer into the void".

I do not assign any supernatural significance to this experience, but it was quite personally significant, because from that point onward I have been acutely conscious of the fragility and beauty of life. For several months after that experience I had to deal with sorting through a wellspring of new emotions, realizations, and philosophical points that had simply never occurred to me before. I remember going to my parents in tears and explaining to them that I'd just become viscerally aware of the relative brevity of life, and I will never forget what my stepmother told me at that point:

"So, what now? Are you just going to go hide in a cave and wait to die?"

I thought about that, and while I still had to go through a few more months of sorting out my new perspective (which made me extremely moody) after this, those words stuck with me and I kept coming back to them whenever the sense-memory of that brief moment of utter transparency and smallness struck me. Yes, humans are tiny. Yes, reality is vast and unforgiving. Yes, we are tremendously, almost poignantly vulnerable. Yes, we are at the mercy of many, many forces utterly beyond our control. But none of that means that the right way to go about things is to simply sit back and try to force-fit our imaginations, aspirations, and ability to appreciate beauty and complexity into a structure imposed upon us by culture, tradition, and lack of good sound medical care for people of all ages.

Life has a pervasive depth to it that exists at all scales and across all structures, and there is absolutely no reason to assert that this depth would somehow go away if people didn't need to worry so much about dying of old age anymore. In short, I don't think anyone, Hurlburt or otherwise, has the right to tell anyone else what makes their life meaningful. When people impose their paternalistic "life's a song, and I get to tell you what that song should sound like" attitudes on others, the result is no less than insulting. I've seen this in autistic advocacy as well: I don't like people insisting my life will be "meaningless" or "incoherent" if life extension becomes a reality any more than I like them insisting that my existence is somehow only a pale shadow of what it "could be" if I were neurotypical.

Hurlburt asserted that he had personally "faced his frailty", but he did not seem to allow for the fact that a person can simultaneously face their own frailty and advocate for longevity research at the same time. I have no illusions that any length of life in particular is assured; my intent in living, and doing the things I do while living, is to live a life that is worthwhile regardless of length. It is a terrible oversimplification to assert that life extension advocacy must come from a place of naivete, or to assume that longevity advocates get some kind of comfort from the mere fact of being advocates. We all have to face our own frailty, and the potential for our own eventual nonexistence, regardless of what scientific endeavors we prefer to promote -- no rational person anywhere is spared the necessity of this.

In the midst of all the talk of symphonies and coherence and balance and structure, Hurlburt revealed at least some of his views to be somewhat strangely reactionary. I'm not sure if anyone who isn't female can relate to this, but there's a certain mode of expression that some people have that can make you feel uncomfortably aware of your gender, and simultaneously invisible because of it. I half expected him to start complaining about how women being able to work outside the home (and vote, even!) was "destabilizing society". He seemed somewhat fixated on reproduction and referred to the stages of life as "childhood, parenthood, and grandparenthood". He remarked on how unfortunate it was that some women "wait too long to have children" and then have problems when they attempt to use techniques like in-vitro fertilization.

As someone who is not only female but who has also chosen not to reproduce (since there are a near-infinite number of things I would rather do with my time than bear and raise my own young), I felt simultaneously left out and liberated by Hurlburt's proclamations. It didn't seem like he was speaking to me, or anyone like me, at all. In light of this, I alternated between thinking, "Oh, PLEASE!" and figuring that his statements had so little to do with me that I was under no obligation to take them seriously in the first place.

Nevertheless, despite the other (possibly innumerable) rants I might be able to base off of many of Hurlburt's statements, I do have to give credit where credit is due. Hurlburt may have a tendency to oversimplify, and he may have displayed a confounding lack of apparent imagination at times, but he was obviously not someone who had never at least tried to think seriously about pertinent bioethical issues. He made some good points about the far-reaching ramifications of altering one gene, or one "aspect" or a person or a population. He rightfully pointed out that "cure" was a loaded word (I could not have agreed more on that point), and suggested that the over-medicalization of human existence was perhaps not the best way to go about progressing into the future.

So, I agree fully that there is far too much medicalization of variation going on, but I draw a very clear line between variations and things that actually kill people. If aging kills people, then why not medicalize the parts of it that tend to be fatal? Of course, simply being old is not a medical condition in and of itself, and should not be portrayed as such -- but think for a moment about what tends to kill people who are old.

Elderly people are not simply spirited away on an angel-drawn pillow surrounded by loving friends and family when they die -- rather, they usually experience immune collapse, cancer, heart failure, atherosclerosis, strokes, pneumonia, or any number of other undeniable nasties. It isn't the "being old" part of being old that ought to be medicalized -- it's the "being so sick that all your organs shut down and you die" part. If we wouldn't want this to happen to a younger person, then we shouldn't tolerate it when it happens to older people either -- unless we are prepared to assert that a person's life stops being valuable once they reach a certain "expiration date". And that assertion is something I would find tremendously repugnant.

Another positive point for Hurlburt was the fact that he brought up the notion of whether a brain might even be capable of "storing" experiences and personal identity over a period of time far longer than today's lifespans. This is almost certain to become an issue if we do achieve longevity medicine -- I do imagine that we have yet to see the outer bounds of what an "unaugmented" brain can possibly do, but eventually, it does seem likely that a person will need to undergo some kind of cognitive modification in order to keep track of his/her experiences. Trying to postulate how those modifications might be achieved, or how they might be implemented, goes to a place of speculation I am not fully equipped to discuss at this time but it is definitely something I will be watching as the future unfolds. And while Hurlburt might have brought up this point as a reason for why we should be wary of extending lives, I think that postulating "death" as the only solution to this potential problem reveals nothing more than lack of imagination.



All that said, at times it almost seemed as if Hurlburt was not actually as opposed to the idea of superlongevity as his official position seemed to imply. He acknowledged that he was there to present certain arguments in favor of a particular position, and did so accordingly, but not without what almost seemed like hesitation at times. He even suggested that some longevity interventions might be acceptable in his estimation; he eagerly cited a research program involving hamsters and stem cells (that supposedly resulted in 30% longer lives for the hamsters). And during the "audience participation" session at the end, he seemed somewhat taken aback by some of the questions from various persons in attendance; there was one man in particular who made such a poignant statement about the reasoning behind "wanting more years" that I am not entirely sure anyone with even a modicum of empathy would have been able to dismiss that statement.

Overall, I reached the end of the presentation with a few new thoughts and things to ponder, but mainly a conviction that we definitely ought to at least run the longevity experiment. Whatever uncertainties, resource distribution challenges, population issues, or social unrest that could occur in a "worst case" longevity scenario are still better off occurring in a world where people are not simply expected (and even encouraged) to stop "presumptuously" existing once they reach a certain age. Rather than assuming the potential challenges of a very long-lived society will be insurmountable, why not at least put ourselves in the position to face them head-on?

(Back to Part 1)

Friday, July 20, 2007

Live from the Future Salon

A more comprehensive entry will follow later -- after the actual Main Event takes place -- but I couldn't resist the opportunity to engage in my first round of live blogging at the Future Salon Science and Ethics of Longevity Research presentation.



Much thanks to SAP in Palo Alto for hosting. It is nice to see so many people interested in longevity, regardless of what side they come out on. Certainly, a debate between Aubrey deGrey and William Hurlburt is a tremendous opportunity for anyone wanting to learn more about the various ethical topics associated with life extension. I look forward to seeing how the presentation goes.

EDIT: I will write a separate, more comprehensive entry tomorrow once I've gotten some sleep, but I did want to say that the presentation, while it seemed a bit rushed at times, was indeed well worth attending. I would also like to apologize to anyone who I might have managed to annoy with my Random Saying of Stuff that happened near the end of Mr. Hurlburt's talk. It's just very difficult to not at least engage in vigorous squirming when the person at the front of the room is commenting on the "unmanliness" of life extension (not a man here, so does that mean I'm excused?).

Sunday, July 15, 2007

On The Lighter Side...


lasers
Originally uploaded by anneec
Since I seem to have been posting rather heavy entries lately, here's something that might qualify as mildly amusing. I was looking through a bag of my old school papers, writing, and artwork today and came across this -- a report on lasers I wrote in fifth grade. The entire class had been given a choice to either participate in the school chorus or write a report. When given that set of options, I decided without hesitation that writing a report sounded like the more fun of the two -- I was one of only two people in the class who had this take on the situation. (Most people apparently preferred group singing to hanging about in the library).

Clicking on the picture will probably make the text legible, but in case you can't parse the penmanship of a ten-year-old, the report reads:

The laser is a new, high-tech object. 'Laser' is an acronym, meaning, Light Amplification by Stimulated Emission of Radiation. Lasers are light beams that are usually red, unless dyed with gases.

Lasers can reach the moon with very little spread. Though no laser-weapons have been invented, lasers can be used for aiming weapons.

They are used in operating rooms for surgery, commonly of the eyes. Lasers can be small and thin, so burning away a disease of the eye, and then fusing the eye skin back together will be easy and take 5 minutes or less.

They make good knifes[sic], because they can cut metal without leaving jagged edges.

Lasers work by a ruby in a glass tube, sending off light. Putting ordinary light through a prism will create rainbows; laser light will not make rainbows.

Lasers are new inventions, and getting better every day. Pretty soon, science-fiction will come true.

by, Anne Corwin


It's just funny to look back and read that kind of thing now, because there are aspects of my writing style and overall tone that really don't seem to have changed much. And of course, there's the "Pretty soon, science-fiction will come true" bit -- Future Transhumanists of America, anyone?
:P

EDIT: I found a whole slew of "inventions" and diagrams from when I was between the ages of about 8 and 10; see them here. For entertainment purposes only, of course.

On Politics, Practicality, and Priorities

While the idea of saving lives in general is neither new nor remarkable, the idea of saving the lives of people 100, 110, 120, and even older is often considered to be radical at best. And while there are indeed various technical and practical challenges to achieving effective health care for people who are nearing (or in) the triple-digits, the existence of political challenges is somewhat confounding.

What makes someone's impending death less of an emergency when they are ninety than when they are nine? If you were told that someone was dying and you didn't know how old they were, would it even occur to you to ask, with the intent of using their age to decide whether they were worth trying to save or not? Most likely, it wouldn't. If you can understand that age should not matter as a variable in terms of whether someone's life ought to be saved, you have grasped the philosophical underpinnings of life extension. Because that's all life extension advocacy is, really -- a recognition of the fact that effective health care must be capable of saving a person's life in order to earn the "effective" designation, and that older people deserve effective health care as much as younger people do. I am all in favor of keeping the definition of "health" expansive and pluralistically aware so as to avoid the emergence of coercive medical paternalism, but there is no definition of health I can possibly imagine that includes the state in which a person is literally dying*.

Some would (rightfully) point out that there are people right now of all ages who are subject to abuse, coercion, squalid living conditions, and torture -- and that that stopping these outrages should be the paramount priority of political activism (and that the idea of life extension suggests something vaguely superfluous). Therefore, it is necessary to examine the idea of where life extension fits into this political equation, if anywhere. Is life extension activism even political at all, or is it something that can be tackled from a more purely practical standpoint? These are questions well worth exploring, particularly in a world where there are so many people still subject to horrors perpetuated by other humans who really ought to know better. Where does life extension, or longevity advocacy, stand in the arena of things that demand our attention?

One thing to acknowledge is that we do not presently have the means to save the lives or preserve the viability of persons 100 and older reliably; this needs to be remedied through research, and part of longevity advocacy is making sure that this research happens (and that it happens soon, so that more lives may be saved). However, we do already have the means to treat our neighbors with more respect, to end torture, and to prevent abuses -- there is no great scientific breakthrough that needs to come about in order to make the world a much, much better place than it presently is for many.

This is a hard fact that needs to be reiterated again and again regardless of how much new gee-whiz technology comes down the line: there is a lot we can do to make the world more hospitable to all kinds of people, and for various reasons (many of which are probably political), we are simply not doing enough of it. Perhaps new technologies can help some in terms of making the implementation of political solutions more effective, but the bottom line is still that attitudes (and the ramifications of changing them) are more powerful than most give them credit for.

So, in response to the idea that life "extension" ought to be less of an explicitly political priority than certain other issues, I can tentatively voice agreement -- not because I don't think longevity medicine is as "important" as other things, but because its hurdles are presently more practical than political. In response to my recent analysis of attitudes toward death, Russell Blackford noted:

Death may be non-morally bad, but I don't see how it can be described as "an outrage". To me, that suggests a moral judgment, but the fact that we all die isn't something that anyone brought about deliberately. Moral reactions to something like death are just not appropriate. It's like saying, "Earthquakes are an outrage" or "attacks by sharks are an outrage" No, they are (in many situations) non-morally bad things, and we have reason to try to avoid them or ameliorate their effects. But it's not like some god causes any of these things and we can (rationally) blast this being's actions as "outrageous".


Here, Blackford is responding to a poll item that included the statement, "Death is an outrage". And his reasoning is sound; it is true that death (specifically age-related death) does not come as the result of any particular person's direct, horrific actions. The comparison of age-related death to earthquake or shark-induced death is quite apt from the moral standpoint; all are things that happen for reasons largely outside the realm of human intent. People dying of "old age" is unfortunate (and that is an understatement), but at the same time, you cannot approach age-related death politically the same way you would approach abuse-related death, or poverty-related death. The idea of life extension has really only wandered into the realm of the political because of the need to break down old, outmoded cultural notions of death as justified equalizer or arbiter of final justice (as well as the need for well-funded research) -- but in essence, it is about as political as the notion that we ought to cure cancer or AIDS, meaning somewhat political but largely practical.

The difference between longevity advocacy and other kinds of advocacy pertaining to mainly human-sourced atrocities is that if the means to allow people to live well beyond 100 in good health (by their own standards, of course) actually existed, I honestly do not think that there would be many political barriers to disseminating these means. People make a lot of noise about the existential value of death (and particularly age-related death) but I do not see it as likely that they would block their grandmother from undergoing a treatment to boost her immune system or unclog her arteries if such a thing were available.

However, the fact remains that there are unequal power distributions in the world as well as a lot of political and social convolution that do block people from getting needed care. Discrimination, bigotry, and systematic devaluation all still exist (particularly when it comes to poor, minority, and disabled persons), and everyone with half a conscience ought to be outraged at these things. These things, after all, are perpetuated by people and stoppable by people, and we should be making every effort to curb them.

The fact that we are technically capable of stopping many abuses but that many continue go so far as to make excuses for these abuses is symptomatic of the need for intense political action in the areas of those abuses. But there is no reason save time constraints that a person cannot be a longevity advocate and a civil rights advocate simultaneously, and certainly no reason to think that longevity advocacy represents anything more esoteric than the simple quest for effective health care for everyone (irrespective of age) that it actually is. Mainly, I think, for most people, it is simply a matter of getting used to the idea of a very different sort of social demography.



*I know that some would say that everyone alive (and not immortal, which presently includes all of us) is "literally dying", however, hopefully it is clear that this is not the sort of "dying" I am referring to here. I am talking about the kind of dying you are doing while getting crushed by a bus or overrun by tumors or experiencing cardiac arrest or undergoing systemic organ failure, all of which are obviously different from the mere state of being potentially vulnerable to such things at some point in the indefinite future.

When Cooling is Heart-Warming

Via Newsweek, Jerry Adler offers a fascinating look at the ever-shifting line between life and death primarily through the story of one man who "died" and yet lived to tell the tale. The article, aptly titled Back From The Dead, follows 61-year-old Bill Bondar who experienced cardiac death while unloading his car on May 23, 2007. In cases of cardiac death, states the article:

Without CPR, their window for survival starts to close in about five minutes. Life or death is mostly a matter of luck; response time to a 911 call varies greatly by location, but can exceed 10 minutes in many parts of the country. In rough numbers, they have a 95 percent chance of dying.


In Bill Bondar's case, the odds were slanted in his favor for a number of reasons. His wife, who found him soon after he collapsed, had some residual knowledge of CPR training she'd taken a decade ago. She pushed on his chest to get a trickle of oxygenated blood to his brain and called 911, after which help arrived within a mere two minutes. Bondar's pulse was restored through use of a defibrillator, and though comatose and at serious risk, he was at least no longer clinically "dead".

The rest of Bondar's tale begins with a move into the intriguing realm of medical hypothermia. Per Mrs. Bondar's suggestion, he was taken to Penn University Hospital, one of about 225 United States hospitals equipped with hypothermia-inducing machines. There, he was injected with chilled saline and wrapped in a network of plastic cooling tubes that circulated chilled water about the outside of his body. Then, continues the article:

Bondar was kept at about 92 degrees for about a day, then allowed to gradually return to normal temperature. He remained stable, but unresponsive, over the next three days, while Monica stayed at his bedside. She finally went home Sunday evening, and was awakened Monday by a call from the hospital that she was sure meant bad news.

"Guess what?" said the voice on the other end. "Bill's awake."


Bondar made a full recovery and was sent home -- a happy ending for him, his wife, and the doctors who worked diligently to save him. One such doctor was Dr. Lance Becker, who directs Penn Hospital's Center for Recusitation Science. Becker, who noted that most documented exceptions to the "five minute survival rule" for cardiac death patients involved individuals who had been cooled to low temperatures (e.g., following a fall into an icy lake), has been investigating the potential clinical applications of this data toward very promising ends. In particular, the article discusses the potential roles of cell death, oxygen, and mitochondria in the processes of bodily death, physiological damage, and recusitation.

It is genuinely refreshing to see a mainstream article acknowledging things like the fact that "[c]ell death isn't an event; it's a process. And in principle, a process can be interrupted.", and that "[f]ive minutes without oxygen is indeed fatal to brain cells, but the actual dying may take hours, or even days." It is easy to see how archetypical imagery like the robed, scythe-bearing personification of death managed to proliferate before these scientific facts were understood; in the past, if someone had a heart attack and collapsed, the finality of the event seemed immediate, certain, and complete. Understanding that this is no longer the case -- that as knowledge of human physiology grows more extensive, we can better parse the process of death into stages -- is critical to the shift in consciousness that will ideally play out in the form of more support for effective longevity medicine and "stopgap" measures such as cryonic suspension.

Speaking of which, Back From The Dead also offers a surprisingly sympathetic look at cryonics as the natural extension of lifesaving medicine; the Alcor Foundation is mentioned and some of its methods and speculations about the future of suspension and reanimation are described:

The Alcor Foundation, in Scottsdale, Ariz., has signed up about 825 prospective patients, and has preserved 76 of them, including Ted Williams. These aren't all whole bodies; some people opt for just their heads, which, apart from being cheaper, freeze faster than an entire body, reducing the danger of frost damage to the cells. Of course, we are a long way from knowing how to reanimate a frozen body, let alone just a head. One possibility, according to Tanya Jones, chief operating officer of Alcor, is to take a cell from the head and clone a new body to attach it to. The other is to scan the entire three-dimensional molecular array of the brain into a computer which could hypothetically reconstitute the mind, either as a physical entity or a disembodied intelligence in cyberspace. This, obviously, is not for the impatient. The physicist Ralph Merkle, an Alcor board member, has used this idea to popularize a fourth definition of death: "information-theoretic" death, the point at which the brain has succumbed to the pull of entropy and the mind can no longer be reconstituted. Only then, he says, are you really and truly dead.


Though the article wanders off into some mild fluff near the end in its discussion of "near-death" out-of-body experiences, overall I have to say that this is by far one of the best recent mainstream treatments of the shifting, evolving definition of death that I've come across.

While cryonics is often joked about even in optimistic circles as being "a mildly expensive funeral" or "the second worst thing that can happen to you", I have long theorized that despite the notoriety it gained a while back due to previous media treatments of the subject, it might actually end up becoming one of the first novel death--defeating technologies to gain widespread approval. The fact that we can already cool the comatose and use this low-temperature state in lifesaving strategies bodes very well for the increasing acceptance of medical cryonics.

Saturday, July 07, 2007

On Bioengineering, Modification, and Motivation

Different existing, emerging, and potential technologies and techniques tend to have different motivations behind them, as well as different affected populations. And yet, frequently it seems as if these technologies, their agents, and their implications end up quite muddled whenever people start discussing bioethics.

This analysis is an attempt to make sense of how to classify and coherently discuss some of the most relevant biotechnologies as well as their implications for different populations -- and for the future at large.

The diagram below represents a map of various means by which people might modify themselves and their offspring, or by which they might "configure" future generations.

My intent in creating it was to provide a visual representation of how I imagine the "bioengineering topic-space" and the kinds of existing, emerging, and potential technologies which are prompting many to re-assess deeply-held concepts of personhood, humanity, and normality.



Affected Entities

The main boxes in the diagram are titled Consenting Agents (blue), Non-Consenting Agents (violet), Pre-Potential Persons (red), and Potential Persons (green). Some of these list items are further clarified (via explanations in parentheses below the item). The blue, violet, red, and green boxes all overlap slightly; this is intended to indicate that there is a certain degree of fuzziness in delineating those categories.

Motivation and Rationale

Each list item in each box is assigned additional color-coded symbols indicating the motivations and reasons that tend to underly that item. These color-coded symbols are explained in the legend in the lower right-hand corner of the diagram.

In the context of this analysis, "Lifesaving" (indicated by a red rectangle) means that a given action can be applied in the service of saving a life. Most of the time, the life being saved refers to the life of the person being modified (via surgery, drugs, etc.) -- however, in the particular case of "Potential Persons", the "Lifesaving" symbol refers to the life of either the mother-to-be, or of siblings or other persons whose lives will be saved due to the birth of a matching donor ("savior siblings").

"Enhancing" (indicated by a blue rectangle) in this context refers to an action taken to improve some aspect of a person's functionality, ability set, or other attribute. I take the position that all actions taken that change a person in some way are best described by the more neutral term "modification", however, the term "enhancement" here is being used to express that from the perspective of the person choosing a given modification, that modification is going to act in a positive manner.

"Cosmetic or Socially Motivated" (indicated by a green rectangle) in this context refers to an action taken to address an aesthetic/cosmetic preference or concern, or to satisfy a perceived social obligation or insecurity (which may relate to discrimination, economic factors, etc.). This category includes everything from haircuts to rhinoplasty to possible future actions people might take (e.g., adopting fur or feathers in an attempt to resemble one's favorite nonhuman animal).

"Life-Enabling" (indicated by a yellow rectangle) in this context refers to an action taken which allows a life to happen. Life-Enabling is distinguished from "Lifesaving" in that in order to save a life, you first have to have a life to save; fertility treatments, for instance, make lives possible but they cannot be said to be saving lives.

Concepts and Buzzwords

The pale cyan and pale orange squares in the "center field" of the diagram represent various concepts and buzzwords often associated with different modification/bioengineering types and the populations they apply to.

The pale cyan square lists concepts primarily relevant to existing agents, whether they be consenting or non-consenting. It is placed closest to the "Consenting Agents" and "Non-Consenting Agents" blocks for that reason.

The pale orange square lists concepts primarily relevant to hypothetical beings and/or social frameworks and theories. It is placed closest to the "Pre-Potential Persons" and "Potential Persons" blocks for that reason.

Note that the orange and cyan squares are not intended to group one set of concepts as being "good" and the other set of concepts as being "bad". I may personally think that some of the items are worthwhile or problematic, but that isn't really the point here. Rather, these boxes are intended to show that there are some concepts that tend to be more relevant to hypothetical/potential beings, and other concepts that tend to be more relevant to existing beings.

It is important to make this distinction because of the common confusion in bioethical discussion that occurs when people attempt to equate an action performed on an existing person with an action performed in order to bring (or not bring) a certain kind of person into existence in the first place. I see that particular confusion as the result of what happens when people spend too much time banging abstractions together without remembering to acknowledge the real world now and then.

Consenting Agents

The notion of consent applies only to cases of existent persons -- that is, persons who either can render legible consent, or who cannot consent but who are nonetheless persons and who might at some point be in the position to comment on what has been done (or not done) to them. Consenting Agents are defined, for the purposes of this discussion, as individuals who choose a particular configuration according to their own functional or survival needs, wants, and/or desires to express their creative impulses through their physiology.

This category includes artificial limb users, feeding tube users, body-modification enthusiasts, fitness enthusiasts, voice-synthesizer users, would-be cyborgs, life-extensionists, and anyone who is in a position to choose between keeping or adding a particular configuration or trait, or discarding a particular configuration or trait.

If an agent is defined as "consenting", it will be assumed that in order for any kind of modification to take place, the individual in question must not be coerced or pressured by outside agents, and that the individual is amply informed as to the possible ramifications of a given modification. It is also assumed that social factors (such as discrimination) count as coercion, meaning that a person who is threatened with something like loss of employment if he or she does not undergo a particular procedure cannot be assumed to be truly consenting. (A literary example of this situation can be seen in Elizabeth Moon's novel, The Speed of Dark, in which autistic workers are "encouraged" to take part in an experimental procedure that would make them nonautistic, due to a perception that the company that employs them could cut costs through eliminating the accomodations provided to the autistics).

Items in the Consenting Agents category are very much tied to the concept of morphological freedom. These items are explained below:

Prosthetic Self Modification is defined here as being something "somatic" that does not affect the germline -- that is, it is something that a person might apply to themselves and that might alter their form radically, but that will not affect their gametes or be transmitted to their offspring. A prosthetic self-modification (as indicated by the color code) might be undertaken for lifesaving, enhancing, or cosmetic reasons.

Examples:

- A lifesaving prosthetic modification might be the installation of a breathing-assistance device, or a treatment intended to restore mobility to paralyzed chest muscles.

- An enhancing prosthetic modification might be the use of a drug that improves visual memory, or replacement of a biological limb with a mechanical one perceived as being stronger or more agile.

- A cosmetic prosthetic modification might be a rhinoplasty or something as simple as a haircut.

Prosthetic self-modification is an area where the concerns of would-be cyborgs, progressives, and disability advocates ought to overlap visibly. These groups are heavily invested in morphological liberty and are dependent upon consistent defense of the right not to be normal. Additionally, these groups share common sentiments about the intrinsic worth of sentient lives, with longevity advocates arguing in favor of intensive biogerontological research (because being old shouldn't mean your life stops being worth saving), and disability advocates making the point that no, they would not rather be dead than disabled.

Gene Therapy is defined as being a procedure intended to alter the genes of an individual (who is assumed in this case to have consented to this treatment, and who has not been coerced in any way). There is potential for this therapy to affect the individual's offspring via genetic transmission, however, there is no guarantee that it actually will.

Germline-Affecting Self Modification is defined as being a chosen modification that will affect one's offspring; that is, the person receiving it knows that his or her children are going to be different in some particular way as a result. The primary motivation behind this sort of self-modification is to modify the person who chooses it, however, any children born following the modification will exhibit characteristics consistent with that modification.

This is the sort of bioengineering that I believe is most likely to contribute toward an eventual "speciation" of future persons; people will configure themselves as they see fit, and their children will reflect these choices. And since parents generally like having children who resemble them in some way (since this makes them easier to relate to), this will not be considered a negative. Germline-affecting self modification stands out as being an avenue by which the sentients of tomorrow may drastically differ from the sentients of today, but not due to any sort of "eugenics" regimen, coercion, or restriction of reproductive freedom.

But does the person who modifies himself or herself in a way that affects his or her germline have any "obligation" toward his or her theoretical future children? Many would probably imagine so, and certainly, people can attempt to extrapolate from the present into the future and make the best possible choices they can according to the information they have available. But most people are likely do this anyway if they plan to have children at some point; I do not anticipate that many parents would choose a modification that would make their future children more susceptible to cancer, for instance.

Additionally, when considering any modified person, it would not be appropriate for states or other regulatory entities to restrict personal modifications on behalf of purely hypothetical future children. After all, if these restrictions applied to personal modification, should they not also then apply to career choice, hobby pursuits, and sporting activities (since all these can certainly affect the configuration of a future child, as well as the environment in which he or she is to be raised)? Restricting the right of germline-modified humans to reproduce would be very similar from an ethical standpoint to restricting the right of disabled persons to reproduce. Such a restriction smacks of notions of "racial purity" and other unsavory concepts that we certainly do not want following us into the future.

Overall, the category of modifications likely to be employed by, and applied to, consenting agents is the one that is perhaps the least controversial (at least if you exclude the issue of safely and ethically testing all the modifications that might fall into this category; that is another topic entirely). The challenges in achieving an environment in which people can seek and enjoy these modifications (or not seek them, since having the freedom not to change is also an element of morphological freedom) are going to be primarily social.

Non-Consenting Agents

This is perhaps the most controversial of all categories presented in this analysis. Whenever there exists an entity who is clearly alive, but who is not considered to be in a position to make the ultimate judgment call as to what happens to their mind and body, there exists much in the way of potential for ethical quandary. The agents in this category might be infants, minor children and adolescents, or adults who are unable to communicate in such a way as to render consent.

Clearly, all these non-consenting agents have rights, however, they cannot be said to have the same exact set of rights as consenting agents do. This is not, of course, due to any moral failing or culpability on the part of the non-consenting agent -- but rather, due to their developmental, morphological, and/or neurological circumstances.

A seven-year-old child might vociferously protest upon being told he needs to get a booster shot, however, if a parent conceded that the child did not actually have to get the shot, that parent would (rightly) be looked upon as negligent. However, that same seven-year-old does have some right to bodily autonomy -- the question is one of how far that autonomy goes, and how much (if at all) perceived "parental rights" or "social obligations" ought to infringe upon this autonomy.

In this framework, babies (even newborns) are considered to be "agents" because their existence is no longer intrinsically linked to being situated inside the body of another person, whereas fetuses are not agents because (as residents of another person's body) their rights do not override those of the mother. This analysis argues that a pro-choice position with regard to a parent's right to terminate a pregnancy (for any reason) is fully compatible with a stance against infanticide, and with a stance in support of the notion of providing lifesaving surgeries to infants by default. This stance removes the necessity of endless debates over the personhood, cognitive capacity, etc., of fetuses, which frequently tend to distract discussion participants from more pertinent issues (such as bodily autonomy and the "do no harm" mandate of medicine).

In the case of adults, an example of a non-consenting adult agent might be someone with a serious communication disability whose wishes cannot be understood by those around him or her. Until a viable means of communication can be established, it falls to the person's loved ones, family members, and friends to make important decisions on his or her behalf. Clearly it would not be acceptable to let a non-speaking adult suffer from a painful ear infection (for instance) simply because their consent to antibiotic treatment could not be established; there is definitely a great need to establish a coherent "ethics of treatment" for the particular case adults with communication-affecting disabilities.

The primary challenge here is avoiding both undertreatment (e.g., assuming an injury or illness isn't painful because the person is not complaining in a standard way) and overtreatment (e.g., sedating or physically modifying a patient for the sake of "convenience"). Ideally, in order to meet this challenge, every attempt should be made to establish a workable communication system for the disabled person. There are numerous (and under-utilized) alternative communication devices available on the market, some of which can be operated by individuals with very minimal motor capacities. It cannot be assumed in every case when a person is deemed "non-communicative" or incapable of complex thought that this is actually so; far more effort needs to be made in terms of providing opportunities for such persons.

Anne McDonald, who has severe cerebral palsy (and who was growth-attenuated through negligent dietary restriction as a child, though she later grew to adult size), writes:

My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne,Australia. As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk...At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years. In the ultimate Catch-22, the hospital doctors told the Supreme Court that my small stature was evidence of my profound mental retardation. I've learned the hard way that not everything doctors say should be taken at face value.


One can only imagine how many more individuals like Anne McDonald end up languishing (in institutions or otherwise) for years because of the assumptions people initially made about their mental abilities; the difficulty in such cases has always been a combination of prejudice, ignorance, and the tangible technical uncertainties of establishing that a severely disabled person is actually communicating something in particular. The bad news is that the prejudice remains difficult to root out (mainly because most people are horrified by the idea that their own views might be prejudiced, and have difficulty distinguishing between having this prejudice pointed out and having their character attacked.) The good news is that the technical uncertainties and difficulties of determining a seriously communication or motor-disabled person's wishes, needs, and wants are capable of being remedied.

Emerging technologies hold great promise here. Brain-computer interfaces in particular might very well end up enabling communication for persons who today cannot even make use of devices like eye gaze boards. By focusing on establishing communication, and directing research efforts toward the assistive-communication area of technological development, the problem of consent is more likely to be ethically remedied because the persons in question will have the means to communicate their own wishes and describe their sensations and thoughts. Imagine a world in which there is no way to tell whether a person you meet in Second Life is using a keyboard, a voice-activated control system, or a brain-computer interface -- this world might not actually be very far off, and "virtual communication space" could very well end up being a tremendous opportunity facilitator for severely disabled persons.

There are two items listed in the Non-Consenting Agents category: Externally Imposed Modification and Lifesaving or Basic Health Restoring Treatment.

Externally Imposed Modification is defined here as being modification that is not chosen or consented to by the agent receiving it (who may be a child or an adult). This type of modification is considered to refer to actions taken that are not directly related to lifesaving efforts. Examples of actions that would fall into this category range from "simple" modifications (like haircuts or ear piercing) to "complex" modifications ("enhancements", surgeries that would normally be considered elective, cochlear implants, cosmetic procedures, etc.).

Overall, modifications to non-consenting agents should probably be kept to a minimum, with more caution and hesitation occurring in proportion to the level of invasiveness of the procedure. Children and persons with disabilities represent vulnerable populations, and therefore require rigorous protections against abuse and untoward experimentation.

In the real world, modifying another person's body or brain through invasive or irreversible means is not in any sense trivial, and while I strongly support the rights of persons to modify themselves per their goals and desires (with very little regulation standing in their way), I assert that the notion of modifying others is heavily complicated by power relations and deserves very careful scrutiny.

Lifesaving or Basic Health Restoring Treatment is defined as being a procedure performed on a child, infant, or adult with the intent of saving their life or correcting a dangerous or painful health issue that directly and primarily effects the patient. Few would argue against this type of treatment, and in fact, one of the primary aims of disability advocates is to assure that all persons are accorded lifesaving treatment when necessary regardless of disability status.(1)

Since livesaving and basic health restoring treatments already exist in some forms, the "emerging and future technologies" aspect of these treatments applies mainly to the fact that we are developing new means every day to save people who would otherwise die. Just a few generations back, if your heart stopped, you were pronounced dead; then came the defibrillator. And additionally, now, people can be kept alive in comas or states of undetermined awareness for years -- this situation in particular might very well serve as a starting point for mainstream discussion of reanimating cryonics patients.

Pre-Potential Persons

A pre-potential person, for the purposes of this discussion, refers to the idea of a person and encompasses a particular action being taken that will affect or make existent a potential person. Examples of pre-potential persons are isolated male and female gametes (that may or may not be brought together to form an embryo), and the germ cells of individuals who would modify those cells with the intent of making their children come out a certain way (for example, deleting a familial gene sequence that makes carriers susceptible to a particular form of cancer).

The population of pre-potential persons is vast and practically unknowable at this point, since it consists of everyone who could or might be born in the future.

There are a lot of grand, overarching theories and frameworks that might be invoked in attempts to make a case for "engineering" a particular kind of future generation, however, I suspect that any single framework is likely to be unrealistic.

If you've ever lived in a gated community, you've almost certainly been subject to a lengthy list of rules and regulations regarding the appearance of your home -- no bright curtains, no garden gnomes, basically nothing that deviates too far from beige.

These regulations are in place in order to maintain property values; difference is perceived as being something that degrades its surroundings. You might have access to manicured parks, golf courses, pools, shops, and other establishments -- all nestled behind the same stone, brick, or iron barrier.

People living on the inside nurture a strange melange of security and paranoia. The sense of being surrounded by a wall makes some breathe a bit easier at night, but at the same time, there's a kind of anxious undercurrent in how the neighbors relate. Everyone's house somehow manages to become a reflection of everyone else's house. Everyone somehow becomes perceived as responsible for the comfort and even the financial well-being of everyone else. And resentment festers beneath the din of neighborly small-talk, affecting the decisions people make, and quietly enforcing homogeneity over time, but never really coming to a head to be examined more thoroughly.

Of course, the above represents an exaggerated and stereotyped description of a gated community. But "gated community" is the image I frequently tend to get in my head while reading some people's notions of what the future ought to look like. It isn't exactly an encouraging image; in fact, I find it to be rather nightmarish. Yes, people might feel safer, and yes, some particular real risks might indeed be mitigated. But "gated community" thinking as applied to the future of sentient life seems to doom that future to a self-perpetuating cycle of suboptimization -- only "approved" configurations will be permitted to exist in the first place, and it will become more and more difficult not to see differences as defects.

An oft-repeated fear is that a "genetic divide" will emerge as a result of transformative technologies, and that this will represent a state of ethically unacceptable "inequality". I do not share this fear; I think it's quite wrongheaded in fact. Not because we don't have other kinds of divides that truly do exist and that need to be addressed (we certainly do), but because attempting to frame genetic (or other) diversity as inherently divisive between the "haves" and "have-nots" is a practice that masquerades as empiricism, but is fundamentally tainted with normative bias.

In order to truly make ethical, appropriate use of emerging biotech, this bias needs to be rooted out and exposed wherever it exists.

Otherwise, we could very well end up with a future in which progress actually slows (and I mean progress in both the ethical and the technological sense) because people become too fearful of novelty and atypicality. I am quite certain, for instance, that some of the knee-jerk negative reactions to questions like, "What if everyone lived to over 120 years of age?" that persists today is due to people being terrified of a future in which old people stick around much longer, in which "retirement" is replaced with "periodic hiatus", and in which the whole concept of getting one's "inheritance" is thrown out the window.

People who think they are being progressive by advocating maxims that are unapologetic about preserving the status quo under the guise of "eliminating suffering" are effectively shooting themselves in the foot, so to speak.

So when thinking about the space of pre-potential persons, it is perhaps important to make sure that you are not committing the "gated community fallacy" and assuming that one single, well-controlled idea about what the future should look like is going to somehow be able to dominate.

The future I imagine, analogy-wise, looks basically nothing like a "gated community"; instead, homes vary widely in size and appearance. There are cottages, ancient preserved and renovated mansions, gutted office buildings filled with colorful blanket forts. There are brick homes, metallic domes, and dwellings made entirely of Lego blocks. There are some clusters of houses that might look homogenous, but not because some housing association insisted on it; some people just happen to like the same look. There are cabins and trailers and tents. There are caves and hobbit-holes and tiny, floating islands. There are chic apartments atop barbershops and restaurants. There are dormitories. There are old hotels. There are three-story Victorians. There are synthetic igloos. Etc.

Potential Persons

Potential persons are distinguished from "pre-potential persons" in that the potential person is "further along" the process toward possible incarnation as a person. Additionally, once an entity reaches the potential person stage, certain variables and conditions have been "set" to an extent that is not true for pre-potential persons. Pre-implantation genetic diagnosis, for instance, deals with embryos -- embryos are potential persons rather than pre-potential persons because they represent a particular joining of gametes, and at the same time, embryos are potential persons rather than actual persons (or "agents") because they are not conscious and cannot be said to have interests of their own.

I would also classify fetuses as potential persons up to a certain point, however, I do think that some distinction needs to be made between a very early-term fetus and a late-term fetus, since the latter is at least more capable of feeling pain than the former. And I also realize that consideration of fetuses may change drastically as better incubators and "artificial wombs" are eventually developed; the "can survive outside the [natural] womb" criterion for viability may soon be a thing of the past, which will certainly bring up new debates.

Additionally, when discussing procedures and philosophies that apply primarily to future hypothetical generations, it is important to take into account what motivations underly these procedures and philosophies. While it may be true that there is nothing wrong with advising expectant mothers to practice good nutrition and get regular checkups to monitor her health and the health of the fetus, there is a definitive difference between recommending common-sense care and engaging in scaremongering about the "burden" of "suboptimal" children.

We are entering an era of greater ability to exercise choice with regard to the configuration of future generations than ever before, and discussing the implications of this increased range of choice for marginalized populations should not be mistaken for "conservatism" or technophobia.

Alice D. Dreger writes in the Bioethics Forum article,
Liberty and Solidarity:
May We Choose Children for Sexual Orientation?
:

Sure, it ought to be the case that defending the rights of parents to use this technology doesn’t ultimately undermine queer rights, but it seems hard to believe that in practice it won’t lead to support of the idea that one ought to try not to have a gay child – just as in practice the prenatal test for Trisomy 21 (Down Syndrome) has led to a general attitude (at least among the vast majority of my very “progressive” childbearing acquaintances) that one ought to try not to have a child with Trisomy 21. I have a friend whose young son has Trisomy 21. This friend was out and about with her son one day, when another woman looked at her and her son and – recognizing that the son has Down Syndrome – scolded my friend with the question, “Didn’t you get the test?!” I can fully imagine a scenario where, thirty years from now, a woman tells a friend her son has come out as gay, only to have the friend respond, “Didn’t you get the test?!” Could we really imagine that offering such a test would have no negative impact on how an already-homophobic culture views people who are gay (and their parents, for that matter)? In that sense, can we really imagine that supporting parents’ right to choose against homosexuality supports the message that gay people are as good as straight people?


Perhaps the best guide to the application of these emerging technologies is found in studying historical context; since banning these technologies outright is both undesirable and impossible (the "genie is out of the bottle", so to speak), it is important to attempt to guide their application while keeping in mind lessons of the past.

In particular, it would be prudent to look at how things that seemed "normal" or fashionable in the past are now looked upon as ignorant, silly, or cruel. People living in any given era tend to have difficulty thinking outside their own temporal and cultural box; things that are actually quite malleable are assumed impervious, and prejudices are mistaken for logic. By looking at the prejudices of the past and how they managed to fuel pseudoscience and oppression, we can work toward making sure that new technologies will be applied in ways that truly do contribute toward a more humane and healthy world. I am entirely optimistic that this is indeed possible, but it will require constant ethical vigilance, democratic considerations, and a healthy respect for pluralism.



(1)Transhumanists and technological progressives will be in a position to fight a very similar battle when modification technologies become more widely integrated into common use, since modified humans and cyborgs may still be considered monstrous, grotesque, and "unnatural" by some at that point. There may be a need for anti-discrimination laws pertaining to proper medical treatment of the modified, particularly if one's modifications are directly responsible for maintaining one's life in the first place -- right now people who depend on ventilators or feeding tubes are unfortunately still subject to "yuck factor" reactions and statements along the lines of, "Well, I wouldn't want to be kept alive artificially!" Tomorrow's cyborgs will almost undoubtedly face similar challenges, particularly if the trend toward biology-hardware integration continues.