Protection as Well as Education

At the same time that they provide beneficial genetic counseling to patients and their families, professionals providing such a service must have a full understanding of the dangers of eugenics. The abuse of genetic information has led to many atrocities in the past. In Germany, the Nazis murdered nearly 7 million "genetically defective" people during World War II and forcibly sterilized nearly half a million others, all in the name of "eugenics"—a policy that calls for the systematic elimination of "unfit" members of the population. The United States also has a checkered past with respect to eugenics. In the early twentieth century, the United States passed laws allowing sterilization of the mentally handicapped and limiting the number of "genetically inferior" ethnic groups that were allowed to immigrate.

In order to prevent such abuses from ever occurring again, the genetic counseling profession has followed in the footsteps of other health-care professions by establishing a code of ethics guiding professional behavior. Policies such as nondirectiveness, prevention of genetic discrimination, respect for patients' beliefs, complete disclosure, and informed consent are components of these ethical principles. Nondirectiveness, one of the major tenets of genetic counseling, is defined by the National Society of Genetic Counselors as enabling "clients to make informed independent decisions, free of coercion, by providing or illuminating the necessary facts and clarifying the alternatives and anticipated consequences."

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Genetic counseling has become a vital part of medical genetics. With the knowledge gained from the past and the tools to help patients choose their paths, genetic counseling will continue to be invaluable in the rapidly growing field of human genetics. see also Eugenics; Genetic Counselor; Genetic Testing; Inheritance Patterns; Prenatal Diagnosis.

Chantelle Wolpert

Bibliography

Epstein C. J., et al. "Genetic Counseling." American Journal of Human Genetics 27 (1975): 240-242.

Fine, B., and M. Koblenz. "Conducting Pre-Test Patient Education." In Humanizing Genetic Testing: Clinical Applications of New DNA Technologies. Evanston, IL: Northwestern University, 1994.

Kessler, S. "Psychological Aspects of Genetic Counseling VI: A Critical Review of the Literature Dealing with Education and Reproduction." American Journal of Medical Genetics 34 (1989): 340-353.

-. "Process Issues in Genetic Counselling." Birth Defects 28, no. 1 (1992): 1-10.

National Society of Genetic Counselors. "Genetic Counseling as a Profession." In National Society of Genetic Counselors. Wallingford, PA: National Society of Genetic Counselors, Inc., 1983.

Reed, S. "A Short History of Genetic Counseling." Social Biology 21 (1974): 332339.

Genetic Counselor

Genetic counselors are health professionals trained in genetics, genetic disorders, genetic testing, molecular biology, psychology and psychosocial issues, and the ethical and legal issues of genetic medicine. Most genetic counselors have a master's degree from a genetic counseling training program. The very first class of genetic counselors was graduated from Sarah Lawrence College in 1971. There are about 2,000 genetic counselors in the United States. Most are women under the age of forty, but the field is becoming more diverse.

Genetic counselors are board-certified by the American Board of Genetic Counseling. Board eligibility or certification is required for employment in many positions, and some states are beginning to license genetic counselors. While salaries vary significantly by geographic location, years of experience, and work setting, according to a Professional Status Survey conducted by the National Society of Genetic Counselors, Inc. (NSGC) in 2000 the mean salary for a full-time master's-level genetic counselor was $46,436. The NSGC, incorporated in 1979, is the only professional society dedicated solely to the field of genetic counseling. Its mission is "to promote the genetic counseling profession as a recognized and integral part of health care delivery, education, research, and public policy."

The role of the genetic counselor has evolved greatly since 1971. Initially, genetic counselors worked almost exclusively in the clinical setting under physician supervision, seeing clients who had been diagnosed as having a genetic disorder, were at risk for developing a genetic disorder, or were at risk for having a child with a genetic disorder. They would assess genetic risk, provide information, discuss available testing options, and provide

oooc ,oc appropriate supportive counseling. The variety of patients and the information and testing options offered by genetic counselors was greatly restricted by the limited technology and genetic knowledge of the time.

Today, as a result of the Human Genome Project and other advances, genetic counselors are now able to offer more services and options. They are able to specialize in a particular area of interest, such as cancer, prenatal, pediatric, assisted reproduction, and metabolic or neurogenetic disorders. Most genetic counselors (more than 80 percent) still work in the clinical setting, either in a hospital or in private practice. However, advances in genetics have enabled genetic counselors to work in a variety of other settings including research, public health, education, and industry.

patient advocate a As a patient advocate, the genetic counselor also remains informed of person who safeguards ethical and legal issues regarding the use of information generated by the patient rights or TT ^ •

advances patient inter- Human Genome Project and incorporates pertinent information into the ests counseling session. For example, the decision to undergo genetic testing may involve controversial issues. Depending on the type of test and the disorder present, testing may have implications for other family members, insurance eligibility or coverage, employment, and quality of life. It is the role of the genetic counselor to ensure that clients are aware of concerns relevant to their situation.

Opportunities for the genetic counselor also exist to consult on research projects, guest lecture, publish articles and books, and teach. Broad training makes genetic counselors highly adaptable to virtually any setting where genetic information is utilized. Overall, genetic counseling is a dynamic and evolving profession. see also Genetic Counseling; Genetic Testing; Genomic Medicine; Population Screening.

Susan E. Estabrooks

Bibliography

Baker, Diane L., Jane L. Schuette, and Wendy R. Uhlmann, eds. A Guide to Genetic Counseling. New York: Wiley-Liss, Inc, 1998.

Internet Resource

National Society of Genetic Counselors, Inc. <http://www.nsgc.org>.

Genetic Discrimination

The potentially stigmatizing nature of genetic information and its history of abuse necessitate special provisions for its protection. Although the U.S. Supreme Court has established a basic right to privacy (in the case of Roe v. Wade), the nonspecific nature of this privacy protection fails to adequately guard against the unauthorized disclosure of personal genetic information.

There have been reports that genetic discrimination has been practiced by employers and insurers who are afraid of being required to cover the potentially high medical expenses of individuals who have a family history of a genetically inheritable disease, even if those individuals exhibit no symptoms of the actual disease. However, recent debate suggests that the actual occurrence of genetic discrimination has not yet been proven and that the perception of risk is exaggerated. Nevertheless, researchers working in

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human genetics should proceed under the assumption of potential harm and should therefore keep confidential all information that they collect or generate as part of any family study they conduct.

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