Worlds of David Darling > Children's
Encyclopedia of Science > Genetic Engineering > 5. Genetic Information:
Ownership & Privacy
Redrawing the Blueprint of Life
a book in the Beyond 2000 series by David Darling
5. Genetic Information: Ownership and Privacy
Who owns your genes? The
answer may seem obvious: you do. But the question of who owns what in the
world of genetic engineering is not at all clear-cut.
Companies and laboratories involved in developing new kinds of animals and
plants by genetic engineering claim that they should be able to patent these
new life-forms. A patent gives a person or organization control over a design
and the right to decide who else may use that design.
The first transgenic mammal to be registered by the U.S. Patent Office was
a mouse that contained a human cancer-causing gene, known as an ontogeny.
Genetically identical copies of the "onco-mouse" were subsequently offered
for sale by a big chemical manufacturing company to researchers studying
ways in which certain kinds of cancer start in human beings.
The idea of patenting animals and plants is opposed by some people. It is
wrong, these critics believe, to treat living things as if they were inventions.
On the other hand, supporters of patenting say that it encourages further
valuable work in genetic engineering and gene therapy. Patent holders, their
supporters point out, can charge other people for using their inventions.
The money the patent holders make provides them with funds for additional
research and development.
A Revolution in Knowledge
More and more specific genes are being identified as the cause of genetic
diseases. Just as important, scientists have also found that the occurrence
of certain other conditions, such as cancer and heart disease, may be influenced
in part by the type of genes with which a person is born. For example, women
who have a particular gene on what is known as chromosome 17 have a much
greater chance of developing breast cancer while young than women who do
not carry this gene. It is important to remember, though, that cancer-causing
substances in the environment, poor diet, smoking, and lack of exercise
are usually more significant than faulty genes as the underlying causes
of cancer and heart disease.
|The hands of a person suffering
from sever arthritis
Genes that make it more likely that a person will eventually suffer from
colon cancer, liver cancer, arthritis, Alzheimer’s disease, and a number
of other quite common illnesses have all recently been found. Alzheimer's
disease is a particularly unpleasant condition. It affects large numbers
of people, especially the elderly, and results in a progressive loss of
mental and physical powers.
As more becomes known about the genes responsible for various diseases,
so the effectiveness of genetic screening as a tool in diagnosis will grow.
This is especially true of diseases, such as cystic fibrosis, that are caused
by single genes. Screening can be carried out on someone of any age. It
can help individuals to know, for instance, whether they carry any faulty
genes that could be passed on to their children.
But the increasing effectiveness of genetic screening also raises some difficult
issues. As time goes on, employers will look more and more to genetic screening
as a way of checking whether future employees will suffer from any genetically
linked diseases that could affect their work. The use of genetic screening
is seen as a serious threat to people’s privacy.
Genes and Privacy
Genetic screening can only be used to predict whether a person might
develop a genetic disease. It gives probabilities, not certainties. However,
as genetic screening becomes increasingly common, there is the danger that
many people will find themselves the victims of discrimination. Suppose,
for example, that a screening test shows that a person has the single faulty
gene responsible for Huntington's chorea. This disease shows itself first
in middle age; the effects usually become noticeable at about age 35 or
40. Thereafter, it leads to a steady breakdown in the sufferer's physical
and mental health.
A potential employer who found out that a job applicant carried the gene
which causes Huntington’s chorea might be reluctant to hire that person.
In fact, such situations have already happened. A graduate of a police academy
in the Midwest was about to be hired as a police officer when it became
known that he had a family history of Huntington's chorea. The man was told
he would have to be tested for the gene responsible for the disease before
he could be accepted.
Such incidents are likely to be more common in the future as genetic screening
becomes widespread. New laws will need to be enacted to protect individuals'
Genetic Disease and Insurance
Health insurance companies also have a great interest in people's genes.
Someone suffering from a serious genetic disorder is likely to make large
health insurance claims. Because of this, company officials argue that they
should have access to genetic information on the people they insure or might
insure. But such knowledge could make the insurers refuse to provide coverage
to people they think are at high risk for genetic disease.
Already people have either been denied insurance coverage or have received
less in insurance payments because they or their dependents have genetic
disorders. As genetic screening becomes a more efficient predictor of disease,
such discrimination is likely to increase. At present, individuals are not
protected by any federal law from insurance companies that discriminate
against them because of their genes. Some states, however, including Arizona,
Florida, and Wisconsin, have passed laws to protect people against such
There is another, equally disturbing danger. The high cost of insuring children
who prenatal scanning suggests might develop genetic diseases could lead
to more abortions. One insurance company put pressure on parents to abort
fetuses with disabilities by threatening to cancel their insurance policies.
Some doctors and politicians believe that laws must be introduced to ensure
that people have the right to keep information about their genes, and the
genes of their offspring, strictly private if they wish to do so.
It is clear that the new techniques of genetic engineering and gene therapy
will solve some important problems while at the same time creating others.
Yet, overall, the human race stands to gain much from its increasing knowledge
of how to alter the DNA code.
Within 50 years, many of today's most devastating illnesses may not be only
treatable but curable. Cystic fibrosis, hemophilia, and other such ailments
may disappear entirely. Other diseases that are in part related to faulty
genes, such as some types of cancer, heart disease, and Alzheimer's disease
may become more easily treatable.
Thanks to genetic engineering, countless new kinds of plants and animals
will serve the human race in all sorts of ways. Some varieties of plants
will produce plastics and other substances for industrial purposes. Other
new strains of plants may be placed on the sides of busy roads to absorb
poisonous gases given off by cars and trucks. Plants with altered genes
might even help reduce the greenhouse effect by absorbing more carbon dioxide
from the air. Meanwhile, transgenic animals will produce valuable medicines
in their milk or thrive in places that are highly polluted.
How much human beings will be genetically engineered in the years to come
is not at all clear. What is certain is that the choices and laws we as
a society make now will have an immense effect on all our futures.
|Bringing Back the Dinosaurs
In the film Jurassic Park, scientists bring dinosaurs back
to life and then place them in the ultimate theme park. The story
of how they are able to do this is cleverly thought out. First, over
100 million years ago, an insect bites and sucks some blood from a
living dinosaur. The insect lands on a tree and gets caught in a sticky
trickle of resin. Over a long period of time, the resin hardens and
turns into a piece of yellow amber. Eventually scientists find the
amber with the insect perfectly preserved inside. They extract the
dinosaur DNA from the blood in the insect's body and use its coded
instructions to bring the dinosaur back to life. Entertaining though
this idea may be, it will probably always remain in the realm of fantasy.
Tiny fragments of insect DNA have, in fact, been extracted from fossils
embedded in amber. But the amber does not preserve the creature’s
soft parts or any of its body fluids. Because of this, any dinosaur
DNA that may once have been inside the insect has long ago broken
down and been lost.
|This fossilized fly, a relative of
today's mosquito, is embedded in amber that is about 40 million