huridocs-tech The Genome Project and the Dark Side

Posted by JonKatz on Wednesday December 08, @09:00AM on
http://www.slashdot.org

URL for the posting is: 
http://slashdot.org/article.pl?sid=99/12/01/1232256&mode=thread

from the Victor-Frankenstein-was-a-piker dept. 

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? 


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