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The Genome Project and the Dark Side

The Human Genome Project, often referred to on this site, may be the most inspiring and disturbing technological project in contemporary history. It embodies the often tragic drama of contemporary technology: well-meaning people trying in the noblest way to improve the world; setting in motion forces few ordinary people understand, agree upon or are prepared for.

The Human Genome Project may be the most inspiring and disturbing technological project ever undertaken. This is the first time we've decided in so organized a way to alter the nature of life itself.

The project is a metaphor for everything that's both right and wrong about technology: well-intentioned people are using it to try to make the world better; at the same time continuously unleashing forces we haven't fully considered or agreed upon, and can't or won't control.

During the past few years, as many Slashdot readers know, scientists all over the world have begun a coordinated, systematic effort to create a complete biochemical description of the human genome - the DNA contained in the chromosomes of human cells - and to develop a genetic map indicating which components of this genetic material determine certain human traits, from depression to disease to susceptibility to addiction to eye color or artistic ability.

The project began in l990, part of a global effort co-ordinated by the U.S. Department of Energy and the National Institutes of Health. Though its founders expected the project to last 15 years, advances in computing have accelerated the completion date; now it's only three years away. The goal of the human genome project is nothing less than to read and record the entire string of (at least) three billion letters in human DNA . According to a progress chart on the project's website, the progress towards mapping the genetics of human beings now stands at 36 per cent.

Aided by new supercomputers that analyze, store and distribute data faster that was thought possible even a few years ago, geneticists believe they have already identified the location of genes identified with dozens of disorders, including cystic fibrosis, some forms of mental retardation and Huntingdon's disease.

Supporters of the project hail it as a means of eliminating disease, emotional disorders and other forms of human suffering. But the risks and ethical dilemmas are staggering, especially considered against a backdrop of scant serious discussion anywhere in the world, certainly not in the United States.

Could employers and insurance companies obtain an individual's genetic information? Could government agencies or law enforcement authorities use genome research to invade privacy and predict behavior? Could prospective spouses demand DNA screenings to reject unsuitable mates?

Perhaps, most likely, will parents beginning using the results of genome research to begin the process of seeking out the "Perfect Baby?" To screen sperm and egg for, size, IQ, cloning, emotional and physical health?

There is no scientific consensus as to how far this project can go, or how quickly. Some geneticists have argued that the genome project is a pipedream, that the dream of unraveling the strands of human life are much more complex and mysterious than any scientific project can really grasp. But the history of genetics, supercomputing and technology all suggest that humanity is entering a new, inevitable era in the use of technology to alter human life, a direction that makes Victor Frankenstein's primitive experiments look like a crossword puzzle.

The genome project evokes a world practically bursting with technological hubris, a universe in which all children would be born healthy, and suffering would be greatly reduced. What could be nobler or more inspiring?

And there is a darker side to this radical project, even though few people in our society are considering it much. We have set out on a project whose goal is to alter the nature of human existence, without the interest of a single national political leader or a single Congressional debate (this in a country in which the mere mention of sex on the Internet sends legislative bodies into hyperdrive).

In effect, children may be given genotypes, genetic profiles. Offspring considered grotesque, revolting, impaired, repugnant or offensive could be eliminated.

How many parents will choose ugly kids when they can be assured attractive ones? Why have an idiosyncratic or rebellious offspring when you can choose a cheerful and pliant one?

Biomedical ethicist Leon Kass is one of many scientists who worry about the pace of genetic research as well as its moral consequences.

"When a couple now choose to procreate," he writes in the eighth edition of "Technology and the Future," edited by Albert Teich (Bedford/St. Martin's), "the parents are saying yes to the emergence of new life in its novelty, saying yes not only to having a child but also, tacitly, to having whatever child the child turns out to be."

Our children, he writes, are not "our" children or posessions; they aren't supposed to live anyone's lives but their own. In altering the nature of new life, parents can not only live vicariously through their offspring but completely shape their lives.

Genetic screening is only one of the moral dilemmas our culture will soon face as the result of fast-moving genetic research. Scientists and biologists are nearly unanimous in their belief that within the next decade, someone, somewhere in the world will clone the first human being.

Given the history of technological breakthroughs once this technology has been unleashed, it's a near certainty that cloning will be used to create children. The nature of technology and much of the controversy and complexity that surrounds it is that people disagree about goals. Some parents will find it noxious to bring cloned humans into the world, others will find it irresistible, even noble.

This kind of social technology - conceived with the noblest of intentions - is not containable. It has no real direction beyond the fact that skilled scientists with powerful tools want to do it. In fact, not doing it seems as inconceivable as doing it.

But we're kidding ourselves if we think the only result will be the eradictation of some diseases and human suffering. Too many people will want to use it, too much money can be made off of it. The convergence of capitalism, technology and genetic engineering will be explosive, especially in a society as technologically thoughtless as ours.

Some forms of genetic selection - rarely labeled what they actually are - are already in widespread use, from genetic screening to prenatal diagnosis. They've already raised lingering ethical questions, only infrequently disseminated by journalists, politicians or scientists.

A quarter century ago, biologist Bentley Glass wrote of "The right of every child to be born with a sound physical and mental constitution, based on a sound genotype; the inalienable right to a sound heritage."

Maybe so. But is this a universal right, or one extended only to affluent people in industrial societies with access to advanced medical technology and generous insurance plans? What about developing and Third-World nations, where few will have access to Perfect Baby technologies? What about despots and dictators who might want to use genome maps to create certain kinds of communities and nations?

Have we really thought through the implications of unleashing medical procedures that would reduce the incidence of addiction, depression, retardation and physical disabilities? Are we comfortable living in a world in which whose categories of humanity - the retarded, the blind, the disabled - will disappear from our part of the earth? Do the healthy lose something when it's possible to eradicate the impaired?

Will the rights of children really be protected, or will the ultimate result of such pell-mell, until -recently- unimaginable tinkering be a world in which people are no longer distinct from one another - a humanity that's universally attractive, intelligent, able-bodied and eyeglass-free?

If any technological project embodies the engineer/author Samuel Florman's tragic view of technology, it's the genome project.

Jules Verne and H.G. Wells are most often credited in our culture with predicting the future, but both had spotty records. Increasingly, the writers who seems to have had the clearest bead on the 21st century were Orwell, author of "1984" and Aldous Huxley, who wrote "Brave New World," both foresaw the growing social movement towards conformity and the use of technology to shape and control culture.

But even he wasn't quite far-sighted enough. He thought government would be the force most likely to peep into our bedrooms, gather information on our tastes and behavior and pressure us to dress, talk and think uniformly. In this at least, he was mistaken.

In the 20th century, the most repressive forms of government - Communism, Fascism, Apartheid, Nazism - have collapsed or been defeated. Their efforts to censor culture or employ technology to control behavior have failed.

The most powerful institutions in our time aren't evil governments but powerful corporations with billions of dollars to conduct research, gather information and shape culture and society.

Modern corporations - Microsoft comes to mind - are not intrinsically evil, and have no political or ideological goals beyond money, but they are frighteningly powerful and influential, bigger than most governments on the planet and obvlivious to their own impact on creativity, freedom and individualism.

A generation ago, who could have imagined that one company would have its software in more than 90 per cent of the personal computers in the world?

Whatever the Genome Project ultimately does or doesn't uncover, it won't be Nobel Laureates and non-profit groups that get to control it or decide how this awesome new technology will be sold and used. It will likely be corporations, the only institutions in our society with enough power to acquire and manipulate mass markets.

In a world where people who want to have kids offer attractive men and women tens of thousands of dollars for their sperm and eggs, what might people pay for the Perfect Baby? And who do you think will control and own the patents and peddle the genetic maps?

10 of 556 comments (clear)

  1. ... by rde · · Score: 4

    Why have an idiosyncratic or rebellious offspring when you can choose a cheerful and pliant one?

    This, along with the 'beautiful and smart' argument, is the most commonly cited problem we'll face with genegeneering. But ask yourself this: how many people reading Katz' essay would be willing to splice 'compliance' into their sprogs? Not many.
    Regardless of the technology, there'll always be a percentage of people who'll misuse it, and there'll always be a group of people who'll assume that this percentage is a majority. But I'd like to ask a few questions.
    1. What percentage of the world's population were born into a world where their parents could take advantage of the latest medical technology?
    2. Even assuming that universal medicare becomes available, is the entire world going to agree on what constitutes 'beautiful'? 'Smart' is also in the eye of the beholder.

  2. Morality != Egotism by PG13 · · Score: 4

    There are many moral issues to genetic engineering (Katz mentioned several) such as wether only certain people have the benifit and what insurance companies may do with the data. However the on complete non-issue is whether it is a good idea to genetically engineer the species (we still need to be careful we do it well but we should definatly improve ourselves).

    What would you do if someone told you not to attend college as you were changing yourself. You would laugh at them no? Why isn't the same issue true with genetic engineering?

    Because people are afraid they will be obsoleted! As long as their aren't designer babies I can convince myself I am valuable for who I am. As soon as a man appears who is better looking smarter faster etc.. what do I have left. In addition it also attacks our egotism by PROVING we are not special but just strings of genetic code. Just like the Copernican model of the solar system genetic engineering will not be rejected because it is moral wrong but because accepting it is too much for our ego's and our power structures to bear.

    In fact we have a DUTY to genetically engineer our children as soon as it is safe. Standing by and lettting someone be maimed is nearly as bad as maiming them ourselves. Every instant we have the technology but don't use it we are effectively maiming our children. Whether it be in terms of the greater intelligence perfect eyesight or stronger bodies by not granting them these things we are hurthing them

    Finally this is an interesting issue but couldn't it have been presented in two paragraphs?

    --
    Marriage is the "pseudo-ethics" that cloaks the messy truth of sexuality in the raiment of propriety -- it's "Don't Ask,
  3. Too Late. by jd · · Score: 5
    Genetic screening is "old hat". Eugenics has been around almost as long as recorded history. The desire to destroy all that is different, in order to "defend" the power & status of "me and mine" is older still.

    The human genome project doesn't change the war between evolution and those who prefer stagnation. It merely changes some of the weapons used.

    The result, though, was decided long ago, before life ever evolved on this planet, before this solar system even existed. Stagnation, whether it's in the form of the "perfect" race, or the "perfect" anything, will always lose, in the end.

    The question that should be asked is not "do we want to play God with our children?", but "do we want there to be any children, after that?"

    Nature has shown, time and again, that it is capable of deadly, sudden change, and that it's oblivious to humanity's ego. A race of "perfect" beings, spawning yet more "perfect" beings, is liable to have a narrow gene pool, making it vulnerable to new plagues, changing environments, and other nasties. Without biodiversity, a small change can have a BIG impact.

    As I see it, humanity is likely to fragment over this issue. It usually does, when something major happens. Those who choose a dead-end path will die out, and those who don't, won't. Those who opt for a life of Eugenics choose, IMHO, the same road as the Luddites, which can only lead to oblivion. Change is the only certainty, and the only path with any long-term future. And trying to create super-humans, or "perfect" people can only kill that change.

    To put this another way, if we had had the ability to do genetic manipulation at the turn of the 20th century, there would have been no Rock & Roll. No Beatles. No Relativity. No nuclear fission or fusion. Professor Hawking would never have been born, his genes would have marked him as terminally ill. So, no black hole theory, either.

    With science and most of the original music this century effectively wiped out, society would have rapidly decayed, and either destroyed by a natural event (eg: meteorite impact, disease), or by man-made disasters (eg: global warming).

    If society does fragment, as I expect, I'll stay in the group that prefers to evolve. It has a future, even if the alternative seems to offer some short-term advantages.

    --
    It's a small world and it smells funny; I'd buy another if it wasn't for the money; Take back what I paid (SoM)
  4. The oldest human dilemma: progress by RNG · · Score: 4
    Hmm, JK paints this as a fundamental dilemma which only raises it's head now. Yet I would say that this is the oldest human dilemma: everytime we invent something we envision some use for it. After a while, someone figures out a different use for it and everybody goes: "Wow, we didn't see that coming."

    Let's see:

    • Fire: Great stuff. Without fire, your house could not burn down. Unfortunately you food would also be cold.
    • Guns: You can now protect yourself from all sorts of creepy folk. Unfortunately guns enable this kind of folk to kill you at a distance.
    • Cars: You can travel all over the place at any time during the day or night. Of course that also means that you're stuck in traffic jams, pollute the environment and might get into ugly accidents.
    • Computers: Wow, we now have technology to analyze all the data we have. Once this is done on a massive scale, coroprations and governments will know more about you than was thought possible a few decades ago.
    • Nuclear Energy: Yeah! We now have safe energy. Unfortunately some people want to make bombs out of this stuff. Oh yes, if there's an acceident and you happen to live near such a plant, you won't be a happy camper.

    So this seems to be natures way of saying There's no such things a a free lunch. Genetic engineering will just be the latest progress that will eventually bite us in the ass, with the difference this time around being that we're playing with the funamentals of life. However we have a history of playing with things before we actually understand them; the whole dilemma with genetically altered foods (and the dying butterflies) is just another illustration of what the future will bring. Brace yourself and let's just hope we get a lucky break ...

  5. JonKatz column from 1858 by sparks · · Score: 5

    The use of antiseptics, often referred to on this site, may be the most inspiring and disturbing use of technology in contemporary science. It embodies the essential tragedy of contemporary technology; well-meaning people trying in the nobles way to improve the world; setting in motion forces few ordinary people understand, agree upon or are prepared for. Inspiring and disturbing - the use of antiseptics in surgery. Well meaning people are approaching what must surely be seen as a tragedy; the willing tragedy of modern science; running headlong into moral questions they are unprepared to deal with. Never before have we decided to alter the nature of life in such an inspiring and disturbing way. The project is a metaphor for everything that is right and inspiring about technology; and at one everything that is wrong and disturbing. Well meaning scientists have not considered the consequences. The project began in 1850, part of a country-wide effort led by inspired and disturbed maverick physician Joseph Lister. Working in obscurity in Scotland, he has uncovered an inspiring and disturbing truth about the essential nature of life; a new tragic revelation for out time. One with immense possiblities but yet tragicly disturbing consequences for the generation to come - that of the 1900s. Aided by microscopes tens and hundreds of times more powerful than those of even a few years ago, surgeons believe they have already identified the bacteria responsible for infecting surgical wounds. The enormous pace of technological development has led us to an inspiring yet tragic moment. We know which bacteria cause some of the dreadful post-surgery diseases of our time. And we know how to combat them. But has our society had sufficient time to decide if it indeed is something that we should be doing? Such is the technological tragedy of our time. There is no scientific consensus as to how far this project can go, or how quickly. Some geneticists have argued that the antiseptic project is a pipedream, that the dream of unraveling the strands of human disease are much more complex than than any scientific project can really grasp. But the history of medicine, optics, and chemistry all suggest that humanity is entering a new, tragic and nevitable era in the use of technology to alter human life. And there is a darker side to this radical, yet inspired, yet disturbing project, even though few people are considering it much. We have set out on a project whose goal is to alter the nature of human existence, without the interest of a single national political leader or a single parliamentry debate. In effect, people may begin to survive surgery in greater numbers. But is this what out postmodern society wants? Are we prepared to deal with a reduction in deaths following minor operations? Is this a GOOD THING, in our tragic yet disturbed society? "There is no such thing," writes Bishop John Milne, "as an entirely accidental co-incidence." And he's right. Which is why we must carefuly consider our response as a society to this inspiring and disturbing medical tragedy. In a world where people want to survive minor surgery, what might they pay for a clean operating theatre? And who will control and own the patents? And who will sell the technology? It is disturbing. It is tragic. It is inspired. But what can we do about it?

  6. Was there a single thought in there? by Kaa · · Score: 4

    We have set out on a project whose goal is to alter the nature of human existence, without the interest of a single national political leader or a single Congressional debate

    And Katz speaks of this as if it were a BAD thing! Really, what could the interest of a politician, or of a whole bunch of congresscritters add to the debate except fuck it up?

    In effect, children may be given genotypes

    Er... genotype is an existing word. Look up its meaning in a dictionary (hint: you are using it incorrectly).

    Why have an idiosyncratic or rebellious offspring when you can choose a cheerful and pliant one?

    For a whole variety of reasons. I, for example, definitely don't want my kids to be cheerful and pliant consumer-drones. In my book being "strange" is good.

    [human cloning] Too many people will want to use it, too much money can be made off of it.

    So, what's bad about human cloning? You've spent paragaphs hinting darkly about unspeakable horrors, but what are they? What is all that awful and horrible about human cloning? After all when it happens naturally and twins are born, nobody seems to be all that excited about it...

    Are we comfortable living in a world in which whose categories of humanity - the retarded, the blind, the disabled - will disappear from our part of the earth?

    Well, I don't know about Katz but I would be perfectly comfortable living in the world where there are no disabled people. I would also like to ask -- is Katz comfortable living in the world where nobody is sick with bubonic plague? How could he stay in the US where it is so hard to find cholera sufferers? And, to think, for example, about the artificialness of prostheses -- why, in the good old days if you lost a leg, you just lived without a leg, not tried to put on these awful metal-and-plastic contraptions -- right, Katz?

    What about developing and Third-World nations, where few will have access to Perfect Baby technologies?

    You mean if everybody can't have it, nobody should have it? I thought that this was a basic idea of Russian communism in the 20s, but it kinda went out of fashion since then.

    A generation ago, who could have imagined that one company would have its software in more than 90 per cent of the personal computers in the world?

    A generation ago who could have imagined personal computers? Besides, a generation (maybe 1.5 generations) ago one company had a presence in every American home and controlled the communications of the entire nation. Yes, I'm talking about Ma Bell. And, pray tell, what horrible things came out of this?

    All in all, this is another content-free rant.

    Kaa

    --

    Kaa
    Kaa's Law: In any sufficiently large group of people most are idiots.
    1. Re:Was there a single thought in there? by captain+larry · · Score: 5
      i think most people have overreacted to this article. i interpreted it mostly as "thinking out load" and hoping for people to think back.

      And Katz speaks of this as if it were a BAD thing! Really, what could the interest of a politician, or of a whole bunch of congresscritters add to the debate except fuck it up?

      maybe nothing, but we are talking about something which has the potential to change the very nature of humanity. maybe not soon, but that is the eventual goal. don't you think it's interesting that we are embarking on something this huge without more support from our leaders? the only other thing i can think of which humanity has attempted which is even on vaguely the same scale is sending people to the moon.

      Er... genotype is an existing word. Look up its meaning in a dictionary (hint: you are using it incorrectly).

      err... i'm hardly an expert but from the dictionary:

      1.The genetic constitution of an organism or a group of organisms.
      2.A group or class of organisms having the same genetic constitution.

      this doesn't seem wildly off base, certainly his intended meaning is clear.

      For a whole variety of reasons. I, for example, definitely don't want my kids to be cheerful and pliant consumer-drones. In my book being "strange" is good.

      this i actually agree with, but i harbour no illusions that the majority of the world feels, or would act, this way. anything that makes people's lives easier will gain acceptance quickly enough. look at the statistics on how much time people spend in front of the tv every day.

      think through all the people you know. how many of them have examined their beliefs and when you keep asking "why?" can explain themselves. hell how many of them have even tried to examine themselves and ask hard questions about why they do things the way they do. not many has been my experiece, it's hard work, there are no immediate gains and it takes a certain type of stubborness for it to be fun.

      So, what's bad about human cloning? You've spent paragaphs hinting darkly about unspeakable horrors, but what are they? What is all that awful and horrible about human cloning? After all when it happens naturally and twins are born, nobody seems to be all that excited about it...

      well right, when it happens naturally, but when it doesn't there are suddenly all these new possibilities. what if some wacko dictator says it's illegal for new babies have red hair? do you care? what about if they make having new male babies illegal? wouldn't this be considered a breach of human rights? what do you do about it? how can you stop it? do you want to stop it or do you just want to view it as another stage of evolution? we're already getting rid of biodiversity in nearly everything we touch ... it doesn't seem beyond belief to me that given the ability to control our children we would, as a culture/species, remove our own bio-diversity to the point where our ability to surive some catastrophic event would be impaired. again, do we care? does this give us the right to stop people doing something which we think is harmfull to our species survival?

      Well, I don't know about Katz but I would be perfectly comfortable living in the world where there are no disabled people. I would also like to ask -- is Katz comfortable living in the world where nobody is sick with bubonic plague? How could he stay in the US where it is so hard to find cholera sufferers? And, to think, for example, about the artificialness of prostheses -- why, in the good old days if you lost a leg, you just lived without a leg, not tried to put on these awful metal-and-plastic contraptions -- right, Katz?

      again you miss the point. what about people like stephen hawking? with the control we're talking about he probably would never have been born. if we remove these bad things is there a hidden cost? no one doubts that the diseases are bad, and we all want to remove the suffering from people around us, but could there be a hidden cost?

      i am reminded of an orson scott card book ("the worthing cronicles" i think it was) where the big lesson was "look back on your life, and remember all the things you are the most proud of. weren't they the times which were the hardest and most painfull, and isn't that why you are proud of them?" given that is true, who are we to steal someone elses suffering.

      i wouldn't wish some nasty, genitically avoidable disease/malfunction on anyone. but don't these things enrich the world around us? do we really understand what we're doing?

      You mean if everybody can't have it, nobody should have it? I thought that this was a basic idea of Russian communism in the 20s, but it kinda went out of fashion since then.

      no, he means "wow, look, yet another way to seperate the 'haves' and the 'have-nots'". what could the implications of that be?

      All in all, this is another content-free rant.

      especially when you work as hard as you did to not actually think about anything he said.

      and finally, in case there is any doubt, i am in favour of experimentation. i think it's great, and i don't think we can stop it, one way or another, someone will figure out how to do this stuff eventually, so we may as well plunge into it openly then force it underground.

      but i do object to your labelling someones attempt to think about things as stupid and anti-progress.

  7. Eugenics, no way by AngryMob · · Score: 5

    This article is meaningless, and this is why:

    First of all, Katz fails to qualify WHY exactly he is afraid of genetic selection - does he fear that everyone will, amazingly, select for the same thing? I don't agree. First of all, even when the HG is decoded, people won't agree on what's the 'better' standard - everyone doesn't go out and say, "Hey, let me go marry a blonde, so I can have blonde babies, because blonde babies are better!" - so why would they when they can choose it genetically?

    And if you're going to debate things like intelligence, it's unclear, even, how much they are genetically determined. Idiosyncracies of personality seem to have reasonably high heritability, but intelligence estimates vary drastically (read the Bell Curve by Herrnstein and Murray for pro-inherited intelligence, search PubMed for hundreds of journal rebuttals of their dubious conclusions). Science isn't even close to agreeing on the genetic nature of intelligence.

    And, assuming in the future that they do find that intelligence is genetically determined, would Katz contend that genetic enhancement of intelligence is evil? That it's more 'human' and 'natural' to have stupider kids? I fail to see the meaning of such sentiments - they're simply vacuuous blubbering and fear of change.

    Finally, any sort of eugenics is impossible. First, there's no one to enforce any standard - who will decide, with an open Human Genome, what's good and what's bad? Not the government, certainly. No matter what, people will always have the right to normal children, and so it's impossible for the government to try and restrict genomic choice. GATTACA, fine, maybe. Nice dream. Not going to happen. There's nothing inherently evil in the knowledge of the Human Genome - if the government was going to pursue eugenics in a socially dominating manner, it would have done it already. The Nazis tried, certainly. We can see how well they did.

    I agree with those who say that the Human Genome is going to be mostly positive. Genetic profiling may happen, I agree. It's likely that even with legislation against it you'll see genetic discrimination - but against what characteristics? Has anyone ever agreed on what makes a better human being? Why do you assume that, once we know the DNA code for the genome, everyone suddenly will?

    Sorry, i'm not buying it.

    SA

  8. HGP & The Dark Side by El+Volio · · Score: 4

    So, will we identify the genes that control one's strength in the Force?

    "Luke, I am your father."
    "NO, it's not true! I was a genetically engineered embryo! My strength in the Force comes from a lab!"

    "There was no father. I carried him, I gave birth to him, I raised him. Must've been those crazy experiments the Hutts performed."

    "No. There is another. The charts I have seen. Stronger in the force the second one is."

    --

    "You can never have too many elephants on your team."

  9. Fido and the DGP by billh · · Score: 5

    I, for one, am waiting for the Doggy Genome Project to be completed. Gone will be the days when you don't know if you will end up with a biter, a scratcher, a leg-humper... I look forward to being able to open up GNU/CADD (computer aided doggy design) on my Linux box and designing the perfect pooch.

    I want a great dane sized dog with huge floppy ears, the brains of Lassie, the speed of Santa's Little Helper, and stripes like a zebra. Or maybe polka dots.

    Oh, and he needs to be potty trained. Who wants to walk a dog when you could be reloading /.?