Genetic breakthrough elicits ethical
alarm
By TERESA MALCOLM
NCR Staff
The announcement that scientists had finished mapping more than 90
percent of the human genetic code was greeted with caution by bioethicists, who
said that, though the knowledge may lead to important medical breakthroughs,
society is unprepared to deal with its ethical implications.
The mapping of the human genome is one of those moments of
absolute brilliance, said Thomas A. Shannon, professor of religion and
social ethics at Worcester Polytechnic Institute in Worcester, Mass. The
problem is, we do all the acting before we do any thinking. The cats out
of the bag now. The information is sitting there. Now we have to figure out
ways to deal with it after the fact.
On June 26, the publicly funded Human Genome Project and the
private Celera Genomics announced in a White House press briefing that they had
completed a rough draft -- a 97 percent-completed map -- of the
human genome, all the DNA strands in the 46 chromosomes found in human cells.
The mapping was hailed as a revolutionary discovery that will lead to new ways
to prevent, diagnose and treat disease. (See special report on genetics,
NCR, Oct. 22, 1999.)
James J. Walter, professor of theological studies at Loyola
Marymount University in Los Angeles, anticipates disappointment when cures are
slow in coming from laboratories. No geneticist says there will be any
substantial benefits from this for at least 10 years, said Walter, who
holds an endowed chair in bioethics.
According to Shannon, the first area of application will be
prenatal diagnosis, which could identify genetic anomalies that are imperfectly
understood or for which there is no cure. There will be many more kinds
of screening tests, but nobody will know what to do with them, he said.
It could be especially problematic with diseases that have a late onset, he
said. If a fetus is diagnosed with the gene for Huntingtons disease or
for breast cancer, which will not show symptoms until the person is past his or
her 20s or 30s, what is the value of the life in between that?
Shannon asked.
Beyond treatment of disease are applications that could determine
a childs intelligence, physical appearance and personality -- genetic
engineering to make a better human being. Referring to the Supreme
Courts recent ruling against a Nebraska law outlawing partial-birth
abortion, Walter said, We cant agree in this society what a person
is. How can we agree what a better person is?
Cathleen Kaveny, a theologian from the University of Notre Dame,
said she fears that societys commitment to the equal dignity of all
persons could erode. There is a danger that more people will begin to
think about their children as their products, she said. Perhaps
children will begin to think of themselves that way. I think this is an area
where religious thinkers have a lot to contribute. For Catholics, what,
exactly, does it mean to say all persons are made in the image and likeness of
God?
Society must also consider the effects of gene alteration on
future generations, Walter said. If genes are altered at the root -- in the
sperm and egg, or germ cells -- there is the potential to alter what the nature
of a human being is, he said.
Shannon emphasized that genetic information is by its very nature
social: When I find out information about myself, I also find out about
my siblings. They may not want to know. I learn about my ancestors and my
descendents. It affects how we think about privacy and individual
decision-making. We havent begun to process that.
All three bioethicists said that the genome mapping brings up
critical questions about availability of health care in the United States. With
over 75 million Americans uninsured or underinsured, already people find
it difficult to get health care, Walter said. The new technologies
will be very expensive and available only to people who have money or
insurance.
Shannon said the genome project commits us to the status quo
of contemporary American medicine, which focuses on expensive, high-tech
rescue medicine. Debate is needed on the ethics of medical practice, he said.
Do we focus on preventative medicine for a vast majority of people, or on
high-tech rescue medicine for a small group of people?
Kaveny said genome mapping should give added urgency
to improving health care. Its not just a matter of patching the
existing system to insure that insurance companies cant require genetic
testing and exclude those with genetic predispositions to diseases, she
said. Its a matter of moving away from the insurance model as a
whole.
The question of access has global implications as well, Walter
said, noting that as private companies such as Celera Genomics move to patent
the sequencing of genes, we need to ask if potential cures will be available to
poor countries. Will we make it private and entrepreneurial or see it as
the common heritage of humanity? he said.
Teresa Malcolm may be reached at
tmalcolm@natcath.org
National Catholic Reporter, July 14,
2000
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