Genetic Screening

• Author: Jeffrey Lehman, Shirelle Phelps

Page 66

The scientific procedure of examining genetic makeup to determine if an individual possesses genetic traits that indicate a tendency toward acquiring or carrying certain diseases or conditions. In 2001, scientists first published the complete human genome map (a human's genetic blueprint), greatly advancing the capability and use of genetic screening, manipulation, and replication.

Genetic testing of humans facilitates the discovery and treatment of genetic defects, both before and after birth. CIVIL RIGHTS proponents, employers, and those who suffer from genetic diseases have debated genetic screening because the procedure poses practical and theoretical legal, economic, and ethical problems. Some theorists, for example, have suggested that genetic screening could improve society if it were made mandatory before hiring or marriage. Others say that this practice would be unconstitutional. Genetic screening is a dynamic rather than static field of medical and scientific experimentation and application that clearly involves scientific, legal, and ethical interests which may differ or compete. Accordingly, each new milestone or discovery warrants commensurate review of these interests for both beneficial and potentially detrimental consequences.

Federal and State Legislation

The earliest national and state legislation concerning genetic screening was enacted in the 1970s. The legislation focused on voluntary genetic testing. The laws generally protect the interests of those who suffer from genetic disease, offer federal and state subsidies for counseling, and support research in genetic diseases.

Congress enacted in 1976 the National Sickle Cell Anemia, Cooley's Anemia, Tay-Sachs, and Genetic Diseases Act (42 U.S.C.A. § 300b-1 et seq.), which permitted the use of public funds for voluntary genetic screening and counseling programs. State legislatures passed measures, with certain exceptions, requiring genetic screening of school-age children for sickle cell anemia. New York enacted a law that provides for premarital testing to identify carriers of the defective sickle cell gene (N.Y. Dom. Rel. Law §13aa [McKinney 1977]). Other states provided for voluntary premarital testing for the sickle cell disease (e.g., Cal. Health & Safety Code § 325-331 [West 1978]); Ga. Code Ann. § 19-3-40 [1974]). Such legislation often included provisions for voluntary, funded counseling (see Va. Code Ann. § 32.1-68 [Michie]).

With the advent of new technology in genetics came increasing concern about its application. In 1996, Congress passed the all-encompassing Health Insurance Portability and Accountability Act (P.L.104-191). One key provision barred group insurance plan administrators from using individual employees' genetic information as a factor when writing group policies (unless such information already resulted in the diagnosis of a illness). However, the bill addressed neither individual policies and premiums nor the use of genetic information in the workplace.

Consequently, in 2000, President BILL CLINTON signed EXECUTIVE ORDER 13145, prohibiting discrimination in federal employment based on...