The other day, I watched a Law and Order SVU episode about a child who had a genetic defect that caused her to grow abnormally. In order to be able to better care for her, the parents forced her to take medication that permanently stunted her growth. The episode was based on real life events.
In January of 2007, the parents of a girl named Ashley had a surgery entitled “growth attenuation” performed on her to permanently stunt her growth to keep her at 4 feet 5 inches. This treatment also includes sterilizing Ashely. Ashley has severe physical and mental disabilities. The parents stated the treatment was for her comfort and to make it easier to carry her and include her in family activities. Ashely was of course much to young to consent to or even understand what was being done to her.
The case created a huge medical and ethical controversy. The hospital and parents defended their decision to to do the surgery while others in the medical community and general public were outraged. You can read the story and see photos of Ashley here
The hospital and the doctors who performed the surgery were roundly criticized for performing the procedure. The Seattle hospital performing the surgery was later found to have broken state law when doctors performed a hysterectomy on Ashley as part of the treatment. Under Washington law minors can not be sterilized without court order.
At what point does the attempt to control genetics become perverse and who gets the say in how much is too much? In Ashley case, there was no guardian ad litum appointed. There was no independent voice speaking for Ashley. Do we need better legal checks and balances before we permanently alter the life course of those who can not speak for themselves. I am not passing judgment on what went down. I do not have children and don’t know what I would do. You can get her parent’s perspective by viewing their website.
Where do we draw the line between the best interest of the child and the best interest of the parents.
This is just the tip of the genetics sword. What if genetic testing during pregnancy told Ashley’s parents that Ashely would have these problems? It is a given that in my lifetime, your lifetime or your child’s lifetime, genetic testing will advance to the point where many deadly and life changing maladies will be able to be detected prior to birth. Genetic engineering and testing is BIG business.
Am I a going to far when I state that I see a world in the not to distant future where genetic testing for certain diseases will be mandatory and it will be a crime to conceive if you test positive for certain genetic disorders. Such a movement would most likely start in more overpopulated areas of the world with less freedoms but I do see it coming. China already has its’ “one child policy“. Is the next genetic step a “One Child No Defects” policy?
The law is now only beginning to address these issues. We can expect that it will lag behind scientific discovery. Lawmakers are not known for foresight. It is fear that generates action. Congress just recently reached an agreement clearing the way for a bill to prohibit discrimination by employers and health insurers on the basis of genetic tests. You can read about it here.
Are we moving towards a “Gattaca” society?
May 25th, 2008 at 5:52 pm
Very interesting points to ponder Brian.
You’ve raised several very good questions in one blog post. Here’s my opinion on just a few of the questions you’ve raised bearing in mind just brief opinions. My gut reaction is the old saying “don’t mess with Mother Nature”. That means no abortions, no breast implants, etc. I’m an old fashioned guy with old fashioned views. That’s just me. But I also recognize that there are medical situations whereby medical decisions probably need to be met for the safety and welfare of both the parents and child. This pendulum swings, but you can’t go very far in either direction. I seem to recall the Germans in WWII had some plans to genetically produce the “perfect society” so it sort of rubs me the wrong way when we talk about this. And then again, you have the question of yet again how much should government intervene with public “domain”?
I also can see China limiting families to one child…but like you say Brian, supply and demand might have made solved that situation itself seeing that the Chinese and the rest of the world are about to embark upon a possible food shortage. I hope the Hispanic culture can sense that the more mouths to feed the less anyone in the family has. Population = poverty. The more people you have to consume a finite amout of food, the less there is for each individual.
I have no idea what the answers are. I just keep coming back to the idea of let nature take it’s course.
May 25th, 2008 at 10:56 pm
I don’t think we’ll ever get to a Gattaca or Space Above and Beyond society.
Its sort of thinking along the lines of the early movies about Artificial Intelligence 50s-80s, if we thought they were a prophecy of the future then we’d all be slaves of our XBoxs by now.
There will probably be a change in society, just look at the difference between how things were in 1900 compared to 2000. Would anyone from 1900 strongly dislike how we live and behave in 2000? Yes there would be a few, but most of it would be due to moral objects, such as out freedom of sexual expression, the equality between people and probably how we dress.
But what it all comes down to is each individual’s motivation level. You may have a child that’s genetically faster than everyone else on the planet, but if he doesn’t train to run, a one legged kid could probably beat him.
May 25th, 2008 at 11:53 pm
There are plenty of scenarios I forsee where people are getting into some real gray areas of “genetic morality”, but the story of this little girl I don’t feel is one of them. I read about her case a while ago and was unaware there was a tv show made about it.
We’re long past the point of being subject to the same laws of evolution humans developed under, so it’s inevitable we in fact will need to exert influence on our DNA as natures its input on the matter. As far as this particular case goes, the girl would obviously not have survived even 100 years ago, so why the problem with ensuring she doesn’t become part of the gene pool?
My mom used to work in state hospital for people with rare and extremely debilitating diseases. Among them are a good number of severley developmentaly disabled patients, and the sad fact is it often happens that females get pregnant and have babies with serious problems. I just cannot advocate the idea that these people have inherent reproductive rights. Call it eugenics, but I think in this day and age it is possible to come up with an objective, scientific standard that can safely establish who is truly capable of distinguishing consentual sex, and likewise those who would be mentally capable of dealing with the possibility of reproduction. I also don’t see a great argument against making it easier to deal with the girl’s size…
May 26th, 2008 at 12:31 am
The default, of course, ought always be that one owns one’s own body and one deserves the right to do what one wishes with it. That situation changes, certainly, when we’re considering the bodies or lives of others. Ideally, whether making decisions about our own bodies or about the bodies of others, we ought to be guided by rationality and reason and the best information we have available to us or can reasonably predict is true from what we have. I see no satisfying argument against experimentation as long as we proceed with caution and due concern for the life that will result. Both those who want to go forward full steam and those who want complete bans on such technology make an error of the same nature – speaking or acting without adequate thought and without adequate learning. Personally, I’m all for genetic alteration of the materials we traditionally use to reproduce ourselves if it means building a better human being, assuming we do so with an educated definition of what “better human being” is or ought to be and proceed in baby steps so as to best avoid major catastrophes with our genetic material and with potential stresses on the Earth’s balance of life.
To make it clear my position, I will never be in support of totalitarian dictates on the individual regarding their right and liberty to reproduce or NOT reproduce, provided the individual hasn’t been fairly judged to be incapable of making such decisions for themselves. Emphasis heavy on “fairly”. Taking over the decision-making FOR another ought never be assumed without a complete consideration of their rights with a superior amount of oversight of that process. Having said that, however, I’m entirely in support of publicly available and unquestionably compassionate education to encourage or discourage individuals in reproductive issues when a rational and reasonable need is perceived.
I believe an educated attempt to improve ourselves genetically is an imperative and not without support historically. After all, we habitually choose one potential mate over another thus manipulating the gene pool naturally, right? We instinctively play with our own genetics in a variety of ways through our own activities and the substances we introduce to our bodies, and we most assuredly manipulate the makeup of our potential offspring by choice of mate and, again, the substances we introduce to our bodies before and during the reproductive process. If science presents to us new methods for doing what otherwise comes naturally to us, ought we not reasonably consider the potential benefits of such methods without knee-jerk rejection?
May 26th, 2008 at 1:53 am
In your reference to Gattaca, I personally believe that any sort of genetic discrimination would be inefficient for society to even attempt to manage. Though you’re correct in mentioning China’s “One Child” policy, you didn’t provide the context of the economic issues that China has attempted to avoid with the policy. It might actually be beneficial to your case to mention that.
May 26th, 2008 at 1:58 am
Education helps, but it’s not enough. The problem comes from the materialists. If people are only atoms and varying configurations, then eugenics is nothing more than prefering some configurations over another. In such a case, who’s to say which configuration is wrong or right? Educate all you want, it’s all meaningless because wrong and right are just societal conventions, and we can change those at our whim. All you need is a good charismatic speaker, with “the right views”.
Of course, if you believe in a some form of soul, it doesn’t matter what religion or spiritual belief you hold (even Stoicism or Shinto or aboriginal spirit worship), there’s an opportunity to have a conversation because each acknowledges that there is something sacred in life so care must be made to ensure that we don’t pervert it. You’ll get disagreements on where exactly to draw the line, but all will agree that a line must be drawn, and anyone with more than a passing knowledge of multiple faiths will trust that the lines will not be that far apart.
May 26th, 2008 at 3:19 am
All these ethical controversies, debates, arguments are useless as for as I see. No one really knows anything about life, good, truth, reality..We are all monkeys hopping on trees and acting like we know some shit. Who’s to judge if it’s right or wrong whether Ashley would consent…
Why do you care? Why would anyone care? Can you make her walk? Can you give her family a hand with raising her? Can all those stupid doctors, and the community do anything except bullshit about ethics and morality to ease that family’s pain?
The problem is monkeys, that no one knows anything. So, chill out with all this ethical bullshit, and let people do what helps them get through life. It’s not like you can do any better.
May 26th, 2008 at 3:22 am
Humanist talks sense..It really takes some charismatic speaker to divert people to see whatever perspective necessary. The same exact situation can be seen, by the same people, in completely different ways depending on external influences that have nothing to do with the situation at hand. So, you could have found yourself arguing for the exact ethical opposite of what you just argued had it been a different teacher in 5th grade, or a car accident, etc. And you would be no more or less correct/right/ethical..
May 26th, 2008 at 3:31 am
Personally I don’t have an issue with the basic principal of ‘editing’ the child’s genetic code before conception. Proper use would allow parents with genetic issues and general hereditary issues to have children who are related to them, not adopted or using donated material.
I do however find genetic testing after conception to see if it’s the one you want a bit distasteful.
Then there is also all the complicated possibilities that can result from complete control of the genetic structure… Parents with children that have been altered just enough to not technically be clones etc.
May 26th, 2008 at 4:08 am
Yes we are moving closer to a Gattaca-esque society; where people favor genoism over racism. The case of Ashley does not fully do the gattaca argument justice, rather it serves to promote ignorance and hatred of genetic modification. Cases involving genetic discrimination will serve the gattaca argument not some melodramatic family decision served to make their child portable (their family, not yours, do not judge).
I personally believe with the advent of genenetic modification, we as a society will lose our thermo dynamic miracles that inspire our very nature. Asians (Taiwanese/Chinese, not all but a good portion) have been giving their children growth hormones for years to obtain taller children which will be able to compete with their white counterparts and excel past their normal sized friends. Before growth hormones, they actually tried to stretch the legs on their children (my Taiwanese friend has personally gone through this, he grew to over 6ft) . My point it this, parents have always tried to give their children the best, it is not considered cheating or unfair; the introduction of genetic modification will only serve to produce faster results.
USA has already passed anti-genetic discrimination laws against insurance and employers, but like Vincent said “…no one takes the law seriously anymore”
Our gattaca future is at hand; ask yourself this “is there money to be made from it?”
That answer unfortunately determines the course of our humanity; where we become our own “gods” and create our own thermo dynamic miracles, determining who we are and will ever be long before we are given a chance to breathe.
niccols other films are quite groundbreaking in that they more or less caputre the fears that stem from technology. (truman show-voyuerism/realitytv, simone- techology vs. humans, lordofwar was a drastic chance from his previous films as it deals with the present)
If we were to take the gattaca argument in present in across the world, it would be the same, parents will vouch for their perfect child, call it an inalienable right, scientists will argue for the progression of mankind, and the religious will always argue against it unless they can make money off of it as well. It is already here, there are laws created to “stop” it but the almighty dollar will prevail.
It is up to us to prevent gattaca (genoism not genetic modification) from happening; I may have painted an impossible image originating in human greed but I choose to believe in hope for our own souls. If we can one day pay for our children to be the next Kobe or Bill Gates, we will also lose the opportunity for the next Lincoln, Einstein, or Van Gogh.
May 26th, 2008 at 5:12 am
Well I for one think that children who were *WITHHELD* genetic treatments that cause them to suffer opportunities could sue their parents for neglect. And that’s where it is headed, without a shred of a doubnt.
Say, genetic treatments for unborn infants become safe – and are shown to have unambiguous benefits later in life from having genetic deficiencies, no matter how minute, corrected – and qualities added. If one group starts using this option their kids will have a clear benefit over all others. Imagine of China starts using it on all citizens, obligatory. In one generation the genetic advantage will reflect in massive compatability advantages in the global markets. The US, Europe, every country will be forced to catch up as fast as possible, incrementally. Genetic markers for deafness? removed. Genetic markers for diabetes? removed. ADHD? gone. color blindness? exit.
In fact a kid with parents who opt, for some reason, to have unmodified children, for whatever reason, could (and should) be regarded as abusive rather than merely negligent in such a scenario. They withold care that’s just as vital for their child to succeed as food or clothing. In this case if they object to the treatments they shouldn’t have children, or adopt modified children so they don’t make the choice.
And this process will accelerate fast, even without gradual technological advance. In one generation the population will on average be a good bit smarter and be able to generate better therapies to improve on the human genetic state pretty fast.
This is no doubt the last generation to procreate “naturally” if there is such a thing. Only third world nations, where such treatments are unaffordable for a while, will stay mired in an ocean of natural deficiency, and will be more and more unable to catch up the genetic divide.
May 26th, 2008 at 5:46 pm
haven’t seen gattaca, but have been planning to rent it on the advice of a friend.
however.. your opening remarks pretty much distrub me the most…
what happened to evolution?
at what point do we as a society forgo allowing the human body to adapt to the world around it…
??
would we then become DEADLY succeptible to common everyday illnesses that we have built up a tolerence for?
i’ll rent the film and come back to comment more to see your angle better.
-paisley
May 26th, 2008 at 5:53 pm
Great topic Brian. Too bad Jack McCoy isn’t here to weigh in.
Much of the to-do against such genetic testing is not for pratical reasons, but for moral reasons. And it is important to note that morality is not legally defined, nor should it be. It is the Religious Right that seeks to influence policy, laws and people’s choices based on THEIR definition of morality, which for many of us, is quite a bit different.
Practically speaking, the reasons Ashley’s parents chose to do what they did make sense. Again, practically speaking. Separate and apart from how disturbing the idea may be, how far out of our comfort zone it may be, etc.
The real dispute here is moral. And religious zealots – and their sizable influence – can ill afford to recognize genetic advances as it conflicts with their baseless ‘intelligent design’ theory. Ergo, genetic science is bad, including any that seeks to improve someone’s quality of life.
Genetic testing is currently available to detect a wide range of potential defects within the first trimester of fetal development. If so desired, parents can make an informed choice to abort if the results suggest a lifetime of genetic abnormalities for their fetus. For those that roll that way, why wouldn’t you want access to that information? Why would we allow some bible banger to prevent us from science that can help reduce a child’s suffering?
Michael M.s last blog post..Memorialize Your Day
May 28th, 2008 at 3:18 pm
Michael M, the key problem is, people are such lousy decision makers when it comes to global issues. We look for local optima for all problems, but don’t realize that local optima can give you the worst possible results for everyone.
Take overfishing. If everyone were selfless and too only what he/she needed, there would be more than enough fish. However, if most people become just a little greedy (even if the booty is shared by the local community), everyone runs out of fish and everyone has to starve for years or even decades until the fish stocks replenish….if they ever do.
The same happens with defects. Some diseases, like sickle cell anemia are actually advantageous in malaria zones. I would not be at all surprised if some gene, like the gene for senility would be advantageous in a future pandemic. From an another angle, it’s well known that autism is most common in families with high IQs. Now, people with IQs often intermarry with people with low IQs, so autism is kept in check. People with high IQs tend also not to have as many children. But just imagine that everyone has high IQs. There would be few children, and without the low IQs to provide balance, the few children we do have will be autistic and unable to live in the world we created. Humanity would then be on the road to extinction.
More grimly, you feel comfortable with *our* generation making genetic decisions for the next generation, but that shows your bias. Our next generation might not be so comfortable with *your* biases. If you want proof, look at history. If you look at the Eugenics projects *in the US* during the 1930s, they were actually not that different than the German’s. The only real difference was that the Germans extended the definition of “defective” to race. But the US had readily defined homosexuality as defective, and the McCarthyists would have defined leftists, even moderate democrats as defective, and if both knew enough about how to test for those “defects” our generation would be free from those “defects” and we’d be all far right bible banging Republicans. Do you feel comfortable with your ancestors deciding what *your* genetic makeup will be?
If you want a vision of what such a “perfected society that is free from suffering and has all the best qualities” looks like, please take a look at the Twilight Zone episode “Number 12 Looks_Just Like You” ( http://en.wikipedia.org/wiki/Number_12_Looks_Just_Like_You ).
You can brush all these facts off as scare tactics, or say “we’ll fix that problem when we get to it”. But anyone who understands differential equations or self-modifying code in AI realizes the folly of that idealism.
I frankly, don’t want “an efficient life” that is “free from problems” or “free from pain and suffering”.
It’s the pains and sorrows that actually make us human and is the source of most art and music and desire to help those who are in need. There’s an old story about a villiage where there was an epidemic of a minor rash. It was extremely irritating, but it would disappear within a month, so the only doctor in the town just told his patients to grin and bear it. Then the doctor got the rash….a cure was found the next day.
June 2nd, 2008 at 2:45 pm
Hi there, what entice you to post an article on ally Engineering Our Children | THE CUBAN REVOLUTION? This article was extremely interesting, especially since I was searching for thoughts on this subject last Monday.
June 19th, 2008 at 1:56 pm
Personally, I do not believe that we are moving towards the Gattaca society either. Not with more and more people are returning to Nature and “living the organic lifestyle”. People are still up in heat over genetically modified food meaning that the era of genetically modified children still has a long long way to go or probably and arguably will never really see the light of day. Even genetically engineered experiments on animals still have not reached any convincing result for the technology to be used for the benefits of mankind. Humans are still motivated by greed and money rather than real desires to improve the lives of fellow humans.
I do agree with Ricky Barnes that humans however, have been “engineered by nature” to look for the best genetic combinations possible for their children by looking for life partners that fulfill the quality criteria. Generally and ideally we would go for good looks, health, intelligence and family lineage (pedigree).
In Ashley’s case, her parents made the decision to stunt her growth and sterilize her by hysterectomy after careful consideration of adapting her parents’ ability to look after her with her conditions. It’s easy to simply have a major uproar based on the fact that she did not have an independent voice speaking out for her. However, one must always look at the fact that, even with the advancement of today’s medical technology, there is still no cure for her conditions whereby her parents took the step to be her lifelong caretakers. About the illegal sterilization, I am sure the law was made with normal children in mind i.e children who will someday have enough reasoning and responsibility understanding to speak out about their wants and needs. For a child like Ashley, will that day ever come? Besides, one must remember that a female’s womb and her menstruation cycle are there for reproduction purpose. For Ashley, would reproduction ability be of any benefit to her?
We must note that detecting defects in unborn foetus is not the same as genetically engineering potential unborn babies. The later is an effort of ensuring the potential babies would be born minus the pre-determined defects whereas the former is choosing whether to terminate or let the already existing babies be born at all. Morally, I do not define Ashley’s parents’ action as meddling with Nature but more like careful intervention with it. I do feel that Ashley’s case is a good example for the moral issue of where to draw the line between what’s in the best interest of the child and the parents.
The definition of the “perfect society” is still debatable to me. The perfect society to our parents may not be the same one we perceive as perfect. What’s perfect in one culture may be the opposite in another. Besides, if our genetic makeup had been pre-determined by scientists in the Lab, wouldn’t that produce a predictable and monotonous society? We have become the way we are today as humans because of our differences, unpredictability and richness in variations. What is the “perfectly-gened” human being anyway? Someone who looks like Jessica Alba but with the brain of Albert Einstein?
August 1st, 2008 at 10:04 pm
The kind thing would have been to let terminate the pregnancy when the defects were known or allowed her to die quietly and painlessly as an infant when the full range of her disabilities was known. The world doesn’t have so many resources we can just keep having children like this. it is sad that we have to think about these things this way, but we truly need to, because the most destructive thing we do to our planet is continue overpopulating it. The US population has a net increase of 1 every 10.8 seconds and the world has a net increase of 1 ever 1.2 seconds. We may have already have passed the point of no return.
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October 17th, 2008 at 3:59 pm
Science is outpacing our morals and ethics. These issues are being debated in the halls of academe with pretty shocking conclusions – see Peter Singer’s work at Princeton. Singer is probably the most highly regarded ethicist in the western world today, and he is a staunch advocate of infanticide. According to Singer, and according to the utilitarian mindset prevalent among many Americans, namely the idea that we should strive for the outcome that provides the “most good for the most people”, if a child is born that will become a burden to the parents, well, it’s morally justifiable to kill the infant, even if the child is a couple months old.
As one of my grad school professors, James Q. Wilson, titled one of his books, the question is this: “Who Decides?”. Who decides what will provide “the most good to the most people”? And is there a principle that trumps the utilitarian philosophy of delivering the most good to the most people? How does a society determine what “good” is?