| |
|
Genetic research raises ethical
and moral questions that the public, researchers, and policy-makers
must consider. In this section, there are stories about some of
the ethical dilemmas that people are now facing every day. As you
read each story, think about your reaction.
|
| Prenatal
Testing |
| A couple has one child with
a severe genetic disease. They are thinking of having a second child.
The doctor tells them that it has recently become possible to test
an unborn child for this disease. |
|
A
couple getting test results in doctor's office. Courtesy
of the National Human Genome Research Institute. |
|
-
Would you want to know?
-
If you wanted advice, with
whom would you talk?
-
Should insurance companies
or the government be able to require you to have an unborn child
tested to reduce health care costs?
-
Who should have access to the
results of the test, if you do get tested?
|
| Adult
Testing |
| Your
family has a history of Huntington’s Disease, a genetic disease
which causes a long and painful decline. Because a person doesn’t
develop any symptoms of Huntington’s Disease until adulthood,
you are uncertain if you have inherited the disease. A reliable genetic
test for Huntington’s Disease is available, but there is no effective
cure or treatment for the disease. |
|
|
| Courtesy
of the National Cancer Institute. |
|
-
Would you want to be tested? Should you
be required to be tested?
-
If you have the genetic mutation which causes
the disease, will you choose to have children?
-
To whom would you tell the results of your test?
How would your family and friends react?
|
| Discrimination |
| You have just
received the results of a genetic test for the presence of a breast
cancer mutation and discovered that you have the mutation. Now you
fear the possibility of disease -- and discrimination.
|
Courtesy of the
National Cancer Institute.
|
|
-
Who should have access to this information?
Your family, your insurance company, your employer?
-
The U.S. Equal Employment Opportunity Commission
finds that people carrying abnormal genes are protected from
job discrimination under the Americans with Disabilities Act.
Still, will your employer try to fire you?
-
Will your insurance company drop you? As genetic
testing becomes more sophisticated, every person likely will
be found to carry genes which could predispose him/her to disease.
Should potential genetic diseases be considered "pre-existing
conditions?"
-
If a genetic disease is known to be common among
a certain ethnic group, should this information be used to justify
job or insurance discrimination?
-
Will the possibility of disease motivate you
to take better care of yourself? How can your environment affect
your susceptibility to disease?
|
| Designing
Your Children |
| Our
increasing ability to manipulate genes raises the promise of treating
or curing genetic diseases. These same tools could be used to enhance
other traits such as height, weight, and intelligence. |
|
Courtesy of the National Institute for Diabetes and Digestive and
Kidney Diseases. |
|
-
If you could design your "perfect"
baby, would you?
-
In the next several decades, will our concept
of "normal" become more narrow? Will we see baldness,
freckles, and shyness as "genetic diseases" to be
cured?
|
Gene
Therapy
|
Although the effectiveness
of gene therapy has yet to be proven, some people imagine a time when
many diseases will be treated this way.
-
Who will have access to gene therapy? Will we create a genetic
underclass of people who cannot afford it? Or will universal
access give all people equal potential to live longer and more
productive lives?
-
Is gene therapy different from drug treatments, surgery, or
organ transplants?
-
Who should set national ethical standards for gene therapy?
Politicians, insurance companies, physicians, the public?
|
|
 |
| Courtesy
of the National Human Genome Research Institute. |
|
