The Perils of Treading on Heredity
By: Philip Elmer-Dewitt
From: Time Magazine
Exercises: J. Geffen
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1.
The prospect is intoxicating. By mapping and manipulating tiny genes, man
could conceivably conquer diseases, improve upon his natural abilities and perhaps
even control his own destiny. But just because miracles might someday be possible
does not necessarily mean that they should all be performed. The tools of molecular
biology have enormous potential for both good and evil. Lurking behind every genetic
dream come true is a possible Brave New World nightmare. After all, it is the DNA of
human beings that might be tampered with, not some string bean or laboratory mouse.
To unlock the secrets hidden in the chromosomes of human cells is to open up a host
of thorny legal, ethical, philosophical and religious issues, from invasion of privacy
and discrimination to the question of who should play God with man’s genes.
2.
The opportunities and dilemmas created by the new genetic knowledge begin
even before birth. It is already possible, through a variety of prenatal tests, to
determine whether a child will be a boy or a girl, retarded or crippled, or the victim of
some fatal genetic disorder. The question of what to do with that information runs
squarely into the highly charged issue of abortion. Many could sympathize with a
woman who chooses to terminate a pregnancy rather than have a baby doomed to a
painful struggle with, say, Tay-Sachs disease or Duchenne muscular dystrophy. But
what about the mother of three daughters who wants to hold out for a son? Or the
couple that one day may be able to learn whether an unborn baby has a minor genetic
blemish? Only the most hardened pro-choice advocate would argue that prospective
parents have the right to abort fetus after fetus until they get the “perfect” baby.
3.
Complicating such decisions is the fact that genetic prognostication will
probably never be an exact science. Technicians may someday be able to determine
that a fetus has a predisposition to heart disease, certain cancers, or a variety of
psychiatric illnesses. But they will not be able to predict precisely when – or even if –
the affliction will strike, how severe it will be and how long and good a life the baby
can expect. As scientists learn to detect ever more minute imperfections in a strand of
DNA, it will become increasingly difficult to distinguish between genetic abnormalities
and normal human variability. “We haven’t thought much about how to draw the line,”
admits Arthur Caplan, director of the Center for Biomedical Ethics at the University of
Minnesota. “It is going to be one of the key ethical challenges of the 1990s.”
4.
History shows that genetic misinformation can be severely damaging. Take, for
example, the supposed link between the XYY chromosome pattern and criminal
behavior. In 1965 a study of violent criminals in a Scottish high-security mental
institution found that a surprisingly high percentage had a particular chromosomal
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abnormality: in addition to the X and Y chromosomes normally found in men, each
carried an extra Y, or “male” chromosome. The press and public seized on the idea
that these so-called supermales were genetically predestined to a life of crime. That
interpretation proved false. Further investigations showed that the vast majority of
men with the XYY pattern – an estimated 96% – lead relatively normal lives. But
before the matter was put to rest, a variety of measures were proposed to protect
society from the perceived threat. One group of scientists urged massive prenatal
screenings, presumably to allow parents to arrange for abortions. Others initiated
long-range studies to identify XYY infants and track their progress over the years
through home visits, psychological tests and teacher questionnaires. These dubious
efforts were eventually abandoned, but not before a group of innocent youngsters had
been unfairly labeled as somehow inferior.
5.
Adults could be wrongly branded as well. Life and medical insurance
companies might one day require that potential customers have their genes screened,
presumably so that people likely to develop fatal or disabling diseases could be
charged higher premiums, or possibly turned away. Insurers have already used a
similar policy to avoid covering individuals at high risk for AIDS, a practice now
banned in several states. Unless it is prohibited by law, employers could conceivably
try to guarantee a healthy work force by asking job applicants to submit to genetic
screening. Clearly, there is a potential for widespread discrimination against those
whose genes do not meet accepted standards.
6.
Once someone’s genes have been screened, the results could find their way into
computer banks. Without legal restrictions, these personal revelations might
eventually be shared among companies and government agencies. Just like a credit
rating or an arrest record, a DNA analysis could become part of a person’s permanent
electronic dossier. If that happens, one of the last vestiges of individual privacy would
disappear.
7.
Even if genetic information is kept private, the knowledge gained can be
profoundly troubling to the individuals involved. It is one thing to uncover a genetic
enzyme deficiency that can be effectively treated through diet. But what about people
who fear they have inherited a debilitating disease for which there is as yet no
treatment or cure? Some might want advance knowledge so they can prepare their
families and put what is left of their lives in order. Others might prefer not knowing
anything at all. “We may be able to see into the future,” says Doreen Markel, a
genetic counselor at the University of Michigan’s Neurology Clinic. “But ask
yourself: do you really want to know what you’re going to die of?”
8.
The questions multiply as the science progresses. Thomas Murray, director of
the Center for Biomedical Ethics at Case Western Reserve University, acknowledges
that some people are worried that a complete map of the genome might somehow
“diminish our moral dignity … reduce us somehow to nothing more than the chemical
constituents of our bodies.” But knowing the entire sequence of DNA base pairs is
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like having the full musical notation of Beethoven’s Ninth Symphony, he says. “In no
way does that knowledge diminish the grandeur of the symphony itself.”
9.
University of Washington ethicist Albert Jonsen is concerned that people with
grave illnesses might be viewed simply as carriers of genetic traits. “Rather than
saying ‘Isn’t that family unfortunate to have a schizophrenic son,’ we’ll say ‘That’s a
schizophrenia family’.” Advocates for the handicapped fear that in the future the
physically afflicted may no longer be seen as unfortunates worthy of special
treatment, but as “wrongful births,” genetic errors committed by parents who failed to
take proper action against a defective gene.
10. To speak in terms of eliminating genetic defects is to tread on slippery scientific
and ethical ground. As any biologist will testify, genetic variety is the spice of life, a
necessary ingredient to the survival of a species. Genes that are detrimental under
certain conditions may turn out to have hidden benefits. Sickle-cell anemia, for
example, is a debilitating blood disease suffered by people of African descent who
have two copies of an abnormal gene. A person who has only one copy of the gene,
however, will not be stricken with anemia and will in fact have an unusual resilience
to malaria. That is why the gene remains common in African populations.
11. Even to label genes as defective can be dangerous. In the 19th century new
discoveries about heredity and evolution gave rise to the eugenics movement – a
misguided pseudo science whose followers thought that undesirable traits should be
systematically purged from the human gene pool. Believers ranged from the
American eugenicists of the early 1990s, who thought humans should be bred like
racehorses, to the German geneticists who gave scientific advice to the leaders of the
Third Reich, instructing them on how the species might be “purified” by selective
breeding and by exterminating whole races at a time.
12. No geneticist today would even talk about creating a master race. Scientists are
careful to point out that experiments in gene therapy will be aimed at curing
hereditary disease and relieving human suffering, not at producing some sort of
superman. But what if people want to use the technology to improve genes that are
not defective but merely mediocre? Could genetic engineering become the cosmetic
surgery of the next century? Will children who have not had their genes altered be
discriminated against?
13. Scientists agree that it would be reprehensible to try to move too far in the
direction of genetic uniformity. “The improvement and enhancement of genetics to
some sort of optimum is not a function of medicine,” observes the University of
Minnesota’s Caplan. “Very soon the medical fields are going to have to state clearly
that their primary goal is the elimination and cure of disease and disability.”
14. The possibilities for gene therapy will be limited for the near future. If gene
transplants are performed on tissue cells – bone marrow cells, for instance – the
altered genes will die with the patient; they cannot be passed on to any children the
patient might subsequently have. Someday, however, it may be possible to change
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genes in germ cells, which give rise to sperm or eggs. If that feat is accomplished, the
new genes would be transmitted to one generation after another.
15. That is what frightens the foes of genetic engineering. If biologists can change
the course of heredity, they can try to play God and influence human destiny. In 1983
activist Jeremy Rifkin, a longtime opponent of many kinds of genetic research, and
several dozen theologians mounted an unsuccessful effort to persuade Congress to ban
all experiments on human germ cells. Said Avery Post, president of the United Church
of Christ, at the time, “We’re not good enough or responsible enough. There is no
question about it. We will abuse this power.”
16. No geneticist is currently planning to transfer genes to human germ cells. Even
though mankind has been playing God since biblical times, rearranging the germ lines
of crops and farm animals to suit human needs, researchers do not advocate extending
such genetic tinkering to people. But medical scientists have an obligation to protect
humanity against disease and pestilence. Once it becomes possible to eradicate a gene
that causes a fatal disorder, and thus keep it from passing to future generations, it will
be criminal not to do so. As director of the Human Genome Project, James Watson
contends that the research has a crucial humanitarian mission. Says he: “The object
should not be to get genetic information per se, but to improve life through genetic
information.
17. Fortunately, the most ardent supporters of genetic research are the first to admit
the potential for abuse and see the need for ground rules. Many ethicists and scientists
who have studied the issues agree on certain basic principles:
 Individuals should not be required to submit to genetic testing against their will.
 Information about people’s genetic constitution should be used only to inform
and never to harm.
 The results of a genetic assay should be held in strict confidence.
 Genetic information in humans should be used to treat diseases, not to foster
genetic uniformity.
18. Knowledge is power, the saying goes. It can be dangerous, but it can just as
easily be used wisely. “I do have faith,” says Case Western’s Murray. “Not that the
judgment of people is always right, but that eventually we will preserve a good
measure of fairness and justice. If we can absorb Copernicus and Galileo, if we can
absorb Darwin and Freud, we can certainly absorb mapping the human genome.”
19. One thing is certain: the genie cannot be put back into the bottle. Like atomic
energy, genetic engineering is an irresistible force that will not be wished or legislated
away. The task ahead is to channel that force into directions that save lives but
preserve humanity’s rich genetic heritage.
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Answer in your own words.
Answer the question below in Hebrew.
1.
What great and perhaps awe-inspiring goals – paragraph 1 – might genetic
engineering among humans enable science to achieve?
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Answer the question below in English.
2.
In what cases would the writer justify abortion – paragraph 2 – when requested
by prospective mothers faced with the results of prenatal genetic tests?
Answer: _________________________________________________________
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Answer the question below in English.
3.
Why is genetic prognostication – paragraph 3 – unlikely to become an exact
science?
Answer: _________________________________________________________
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Answer the question below in Hebrew.
4.
List the serious disadvantages a person could be put to – paragraph 5 – if he
were to be wrongly branded as a result of some gene screening?
Answer: _________________________________________________________
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Choose the best answer(s).
5.
Gene screening – paragraph 6 – might spell the end of
a. human society.
b. disease.
c. individual privacy.
d. prosperity.
e. genetic engineering.
Answer the question below in English.
6.
What does the information provided in paragraph 7 suggest about human
nature?
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Answer the question below in English.
7.
How, according to Thomas Murray – paragraph 8 – is a thorough familiarity
with biology likely to affect our perception of genetic engineering?
Answer: _________________________________________________________
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Answer the question below in Hebrew.
8.
How are the norms and attitudes of those supporting genetic engineering –
paragraph 9 – likely to be perceived by present-day standards?
Answer: _________________________________________________________
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Answer the question below in Hebrew.
9.
To what end – paragraph 10 – is the gene that is likely to bring about the onset
of sickle-cell anemia mentioned?
Answer: _________________________________________________________
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Answer the question below in English.
10. To what undesirable results did some of the research conducted by geneticists in
the 19th century – paragraph 11 – lead?
Answer: _________________________________________________________
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Answer the question below in Hebrew.
11. In what sense can present-day geneticists – paragraphs 12-13 – be said to have
set their sights rather lower than the 19th century eugenicists?
Answer: _________________________________________________________
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Answer the question below in English.
12. To what should one attribute the comparatively modest goals – paragraph 12 –
set by present-day geneticists? (entirely inferential)
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Answer the question below in Hebrew.
13. What does the expression to play God – paragraph 15 – specifically refer to?
Answer: _________________________________________________________
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Answer the question below in English.
14. In what sense can humanity – paragraph 16 – be said to have been playing God
since Biblical times?
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Answer the question below in English.
15. Why would it be unwise – paragraph 16 – to put an end to genetic research?
Answer: _________________________________________________________
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Choose the best answer.
16. What do the last two paragraphs suggest?
Answer: They suggest that genetic research
a. is pernicious.
b. has barely begun.
c. is entirely beneficent.
d. is unlikely to affect us in the foreseeable future.
e. has reached the point of no return.
f. is about to be abandoned.