Diagnosing and Treating Genetic Diseases
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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.   Photo of couple getting test results in doctor's office - Courtesy of the National Human Genome Research Institute
A couple receiving test results from physician. Courtesy of the National Human Genome Research Institute

  1. Would you want to know?

  2. If you wanted advice, with whom would you talk?

  3. Should insurance companies or the government be able to require you to have an unborn child tested to reduce health care costs?

  4. 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.  

Graphic of woman pondering - Courtesy of the National Cancer Institute

Courtesy of the National Cancer Institute

  1. Would you want to be tested? Should you be required to be tested?

  2. If you have the genetic mutation which causes the disease, will you choose to have children?

  3. 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.

Photo of African-American family - Courtesy of the National Cancer Institute
Courtesy of the National Cancer Institute

  1. Who should have access to this information? Your family, your insurance company, your employer?

  2. 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?

  3. 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?"

  4. 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?

  5. 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.   Graphic of woman with baby - Courtesy of the National Institute of Diabetes and Digestive and Kidney Diseases Courtesy of the National Institute for Diabetes and Digestive and Kidney Diseases

  1. If you could design your "perfect" baby, would you?

  2. 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.
  1. 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?

  2. Is gene therapy different from drug treatments, surgery, or organ transplants?

  3. Who should set national ethical standards for gene therapy? Politicians, insurance companies, physicians, the public?

  Color slide of chromosomes - Courtesy of the National Human Genome Research Institute
Courtesy of the National Human Genome Research Institute.
 
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