Genetic Information Different?
Doris Teichler Zallen,
by Paula Gregory,
PhD and Miriam
Genetic tests are the
newest addition to a growing variety of medical tests.
All medical tests are designed to provide important
information about your state of health. For genetic
tests, as for other medical tests, there can be tension
because of anticipation of the test, and the results
can be troubling for people who receive bad news. Yet
many people consider genetic tests and the information
they provide to be different from other types
of medical tests. Why is this the case? There appear
to be several reasons:
of Genes in Families
are shared in families, passed from parents to children
to grandchildren. This means that a genetic test, which
provides information about the genetic status of one person,
can also alert others in the family to the fact that they
also may have the same mutation.
More than other types of testing, a genetic test of a
single individual can be viewed as a test of a whole family.
than other types of testing, a genetic test of a
single individual can be viewed as a test of a whole
differ in their preferences. Some may be eager to learn
more about their genes and want to find out if they
too have inherited a particular gene. Other family members
will not want to know. However, if one family member
does get testing, their subsequent behavior, for example
suddenly engaging in frequent medical screening for
a particular disease, can provide strong clues about
the genes another family member may have inherited
whether they wanted to know or not.
genetic information has also created rifts in families
as people blame one another for being the source of
a flawed gene. These sometimes intense reactions do
not seem to occur as regularly and deeply for other
types of medical tests.
The Predictive Possibilities of
medical tests are used to ascertain your current state
of health. However, some genetic tests can offer a peek
into the future by revealing the presence of a gene that
can bring on a disorder later in life, or a gene that
increases susceptibility to a health problem. Some people
find this information helpful in planning for the future.
Such planning could include changes in lifestyle to ward
off future health problems, undergoing more frequent checkups
to catch problems in the early, more treatable stages,
or financial planning to prepare for future medical needs.
Other people find the information useless. For them, it
is a dark cloud that diminishes the pleasures of the present
with constant health worries, especially when there may
be no treatments or therapies available that can delay
or prevent the onset of a disorder.
tests can offer a peek into the future.
Current Status of Genes in our Society
years, scientists have alternated between thinking that
biological influences like our genetics (nature) or
environmental influences (nurture) are most important
in determining human health. The current focus is on
genes as the most important factor in determining human
reasons for this are complex. One factor is the amount
of genetic information that is flowing from the Human
Genome project. Scientists and others have used language
like the "search for the Holy Grail" or the
"book of life" to describe the project. Such
language inevitably endows genes with a special status.
current focus is on genes as the most important
factor in determining human health.
environmental contributions to health have been
is intensified by all the media coverage devoted to
genetics. Newspapers and television programs provide
a steady stream of reports detailing dramatic new findings
about genes and connecting them to a variety of human
traits. The message is sent out repeatedly that our
genes define who we are. Equally important environmental
contributions (such as diet, education, exposure to
workplace chemicals and the like) have slipped into
As a result,
many people feel more deeply about their genes than
they do almost any other aspect of their lives. They
guard their own genetic information or what they
consider their genetic secrets more zealously
than they do other types of very personal information.
For example, one series of consumer interviews found
that people are reluctant to share genetic matters even
with religious advisors with whom they feel comfortable
sharing other, very private, aspects of their lives.
In addition, many studies have revealed that learning
of the presence of a mutation
can damage self-image, create anxiety, and undermine
psychological well-being. Learning that you are spared
but that a loved one is not can also cause considerable
Misuses of Genetics (The "Eugenics" Movement)
is also different because of how it has been used in the
past. This history has provided painful lessons in the
misuse of information, in the mistreatment of people,
and even in the planned destruction of whole groups of
people because of beliefs about their genes.
has provided many painful lessons about the misuse
of genetic information.
Much of this
unfortunate history can be traced to the ideas of Francis
Galton an illustrious British scientist, mathematician,
and a cousin of Charles Darwin. In 1883, Galton's notion
of biologically superior and biologically inferior humans
became codified in the term "eugenics." Eugenics
was proposed by Galton as the explanation for why some
people achieved more in society economically,
socially, or politically. Such individuals, Galton claimed,
were superior in hereditary endowment. On the other
hand, people from the lower classes were inferior in
their biological endowment. Curiously, social or economic
factors that could account for these features were disregarded.
became the basis of strategies to improve the qualities
of the human race. It was felt that those with good qualities
should be encouraged to reproduce more abundantly and
those with inferior qualities should be discouraged from
reproducing. These views were to become the basis of eugenics
programs in countries throughout the world.
views became the basis of strategies to improve
the qualities of the human race.
In the early decades of the 20th century, eugenic ideas spread rapidly to many different countries. In the United States, eugenic ideas flourished. They yielded immigration laws meant to keep out those thought to have inferior genes (for example, the Immigration Act of 1924) and involuntary sterilization laws meant to keep citizens thought to have defective genes from having children. An estimated 60,000 such sterilizations were carried out in over thirty states. Most of those who were sterilized had been confined as children in state institutions. They were mostly poor, uneducated, and from unfortunate homes.
excesses and the best known occurred in Nazi Germany.
There, eugenic ideas were fanned by a long-festering
hatred of minorities and by a political and economic
crisis. This set off a chain of increasingly dire events.
Laws permitting compulsory sterilization of people deemed
unfit were followed by policies that permitted involuntary
euthanasia of children with serious physical or mental
illness. Then came the adults. It ended in the genocide
of the holocaust.
of the Holocaust and the growing recognition that most
traits are NOT caused by single genes acting in isolation
from the environment led to the repudiation of eugenic
ideas. However, it is this history of misuse of genetic
information that lurks in the background when genetic
tests are being considered.
About A "New Eugenics"
history of the eugenics movement has led to the current
concern even fear that the new forms of
testing, whether for the presence of single genes
that can bring on severe illnesses or for genes that can
provide clues about susceptibility to chronic diseases,
could lead to stigmatization and discrimination. There
are concerns that genetic test results could be used to
deny insurance, jobs, educational opportunities, and even
government services for mutation carriers or their nearest
present, there is no hard evidence to indicate that
genetic discrimination is widespread. There are anecdotal
reports in the literature that indicate that it has
occurred, but in many cases the details haven't been
investigated. Still, this concern about the possibility
that genetic test results could lead to discrimination
emerges time and again in interview studies.
and state governments are taking steps to offer protections
to individuals who have obtained genetic information
about themselves or their families. In some places,
there are restrictions on what insurance companies can
ask when deciding whether to insure someone or how much
to charge for insurance. The Americans with Disabilities
Act may also serve to protect individuals who are perceived
by employers to have a disability as a result of a genetic-test
Difficulty in Obtaining Genetic Information
the situation for other types of medical information,
it is often difficult to navigate your way through the
medical community to get genetic information. Many physicians
have limited training in genetics or find it difficult
to keep up. Studies have shown that many people have received
little or no genetic information from their physicians
at the time of the first diagnosis of a genetic condition.
Relatively few people at risk for inherited conditions
were referred to genetic specialists.
The best way to obtain reliable genetic information is to consult with a genetic counselor. You can often get referrals to a genetic counselor through your doctor or medical facility.
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