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The
ethical questions emerging from the field of genetics are creating
a sense of urgency due to the enormous scale of research associated
with the Human Genome Project (HGP), sometimes referred to as
the Human Genome Initiative (HGI). Started
in 1988, HGP is a “big science” project, international
in scope, involving numerous laboratories and associations of
scientists strewn across the landscape. It has a current annual
U.S. budget of $200 million with a fifteen-year timeline and a
$3 billion total price tag. The scientific goal is to map and sequence the human DNA which will tell us the order of the four base pairs—the A,T,G
and C nucleotides—that compose the DNA molecule. The mapping phase was
completed in 2001, and the focus then shifted to understanding the functions of
the 40,000 or so genes in each of our body’s cells. The study's
motive is to identify the 4,000 or so genes that are suspected
to be responsible for inherited diseases and to prepare the way
for treatment through genetic therapy. For the human beings whose
cells contain the DNA being studied this new knowledge will require
new thinking about the ethical, legal, and social dimensions of
life.
It
is significant to note that in the case of HGP, we have scientists
who are already aware that their research will have an impact
on surrounding society and are willing to share responsibility
for it. When James D. Watson counseled the U.S. Department of
Health and Human Services to appropriate the funds for what would
become HGP, he recommended that 3% of the budget be allotted to
study the ethical, legal, and social implications of genome research.
“We must work to ensure that society learns to use the information
only in beneficial ways,” says Watson, “and, if necessary,
pass laws at both the federal and state levels to prevent invasions
of privacy...to prevent discrimination on genetic grounds.”Watson, who along with Francis Crick, is famed for his discovery
of the double helix structure of DNA, was the first to head the
Office of Human Genome Research at the National Institutes of
Health (NIH). He recently resigned amidst a dispute with former
NIH director Bernadine Healey over the morality of patenting of
DNA sequences. Moral controversy has already broken out on this
and numerous other issues. Hence, we can expect genetics and ethics
to court one another for the next few years, leading perhaps to
a marriage, to genethics. A
handful of theologians and ethicists have begun a serious dialogue
with research scientists to sort through the issues.
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| Contributed by: Dr. Ted Peters
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