Introduction to the Issue of Genetic Testing

Genetic testing is a rapidly growing field in the world today. Current genetic tests (screening) can indicate specific disorders which may be inherited or acquired through or damaged genes.  The most common reason for utilizing genetic testing is to determine inherited diseases. This testing can be done prenatally or postnatally. However, the ability to locate specific genes which can indicate the propensity for developing a disease has created overwhelming joy as well as concern among researchers, doctors and the general populace.

These advances in genetic testing are also likely to have profound social and political implications, legal ramifications and psychological costs. When examining how these tests may impact the quality of life, one must first determine what quality of life means. Does it refer to the general well being of people or just their general health? How will knowing that they may have a disease (some time in the future) impact their life style? Will it impact their employment or their future health coverage? If a parent has a child tested, when or should the child be told the results? How will the knowledge impact the way the parents raise and interact with the child?  Will genetic testing create a need for genetic counseling?

In response to worldwide concerns related to the human genome, UNESCO drafted a Universal Declaration of Human Rights which will be voted upon at its General Conference in November of this year. Some of these rights include the following:
 

1. “Everyone has a right to respect for their [sic] dignity and for their [sic] rights regardless of their [sic] genetic characteristics.”
2. “Everyone must be able to benefit from advances in biology and genetics, with due regard to their [sic] dignity and rights.”
3. “No one may be subjected to discrimination based on genetic characteristics....”
4. “Genetic data associated with a named person and stored or processed for the purposes of research or any other purpose must be held confidential and protected against disclosure to third parties.”

Web links with relevant information:

• Review of Genetic Testing

http://ww2.med.jhu.edu/tfgtelsi/promoting/prinrec-REVIEW.html
This site gives a short one and a half page review of genetic testing by the Task Force on Genetic Testing.
 
• PROMOTING SAFE AND EFFECTIVE GENETIC TESTING IN THE UNITED STATES

http://ww2.med.jhu.edu/tfgtelsi/promoting/prinrec.html
This site gives the members of the above Task Force on Genetic Testing.
 
• "Dangerous Legacies" by Dana Hawkins, US News and World Report, Nov. 10, 1997:

http://www.usnews.com/usnews/issue/971110/10priv.htm
 
• "Do You Want To Know if the News is Bad?"  Time Fall, 1996

http://www.pathfinder.com/@@JPmyZAYApzP5bq.S8/time/frontiers/agenetest.html
 
• Search results from Excite

http://www.excite.com/search.gw?trace=a&search=genetic+testing
This web site offers additional web sites for specific articles on genetic testing.

Materials Available in GCC Library

These books are on 1 hour reserve at the Circulation Desk.  In order to check these materials out, the student must have a current student ID card.

• Long, Robert Emmet, ed.  Rights to Privacy.  New York:  H. W..  Wilson, 1997.
            (Reference shelf, v.69, no. 3) KF1262 .R54 1997
• Taking Sides:  Bioethical Issues.  Ref R724 T35 1995 (issue 20); Ref R724 T35 1997 (issue 14)

These are the same, just newer editions although these articles are not different.

• Nelkin, Dorothy.  Dangerous Diagnostics:  The Social Power of Biological Information.  New York:     Basic Books, 1989. RA427.5 .N45 1989
• Barker, Penelope, ed.  Genetics and Society.  New York: H. W. Wilson, 1995. (Reference Shelf, v.67, no. 3) QH438.7 G44 1995
• Wekesser, Carol, ed. Genetic Engineering. San Diego: Greenhaven, 1996. QH442 G444 1996.

The following are located at the table behind the Reference Desk:

• CQ Researcher 1993: 1023.  Short sidebar on DNA Profiling/Medical Screening
• Gene Therapy’s Future. CQ Researcher 8 Dec. 1995: 1103-1104.
• Reproductive Ethics. CQ Researcher 8 Apr. 1994: 295-296.

Videos:

• Quality of Life in the Electronic Village. Virginia Polytechnic Institute and State University, 1995. (150 min) TK5105.5 Q38 1995

This video conference probes the possible effects of the "electronic village" and related ethical and social concerns such as access and privacy.
 
• Off Limits: your health, your job, your privacy. Educational Film Center in association with WETA. PBS, 1994 (57 min) HD6971.8 .O44 1994

The section on health and health insurance is applicable to the topic of genetic testing.
 
• A Question of Genes: Inherited Risks.  PBS, 1997. (120 min.)

This tape highlights the ramifications (positive and negative) of predictive genetic testing through dialog with patients, doctors and a gene discovery company.  Actual cases are followed over a period of time.
 
NOTE:  Library of Congress uses Medical Screening, not Genetic Testing as a subject heading.  In Infotrac, both subject headings can be used.  Also use keyword search