Statement of Legislative Consultant Ron Weich on Genetic Privacy and Non-Discrimination for the Senate Health, Education, Labor, and Pensions Committee

In recent years a number of states have enacted genetic privacy laws, but the ACLU believes that a comprehensive federal law is needed to ensure that all Americans are protected from this unacceptable form of discrimination. For this reason, the ACLU has endorsed S. 318, "The Genetic Nondiscrimination in Health Insurance and Employment Act," introduced by Senator Daschle, Chairman Kennedy and others earlier this year.

The ACLU supports S. 318 because it meaningfully addresses the serious threat to civil liberties posed by new genetic technology. It prohibits genetic discrimination in all aspects of employment, including hiring and compensation. It prohibits insurers from restricting enrollment or adjusting fees on the basis of genetic information. And it prohibits both insurers and employers from requiring genetic testing.

During the recent debate on the Patients Bill of Rights (S. 1052), the Senate adopted by voice vote an amendment offered by Senator Ensign on the subject of genetic discrimination. There are several reasons why we believe S. 318 provides superior protection against genetic discrimination than the Ensign amendment.

The most important respect in which S. 318 is preferable is that it bans discrimination by employers as well as health insurers. In contrast, the Ensign amendment only prohibits discrimination by insurers, leaving individuals vulnerable to discrimination in hiring and promotions. Without protections in place in both areas, individuals have reason to fear that their genetic information could be used against them.

Also, the definition of genetic information in the Ensign amendment is narrower than the corresponding definition in S. 318. The Daschle-Kennedy bill protects information gleaned from all genetic tests, even if the test was not administered for the purpose of obtaining genetic information. In contrast, the Ensign amendment explicitly does not cover information derived from a test administered in order to "detect symptoms, clinical signs, or a diagnosis of disease." Similarly, the Ensign amendment contains an exception that would permit health plans to obtain genetic information "for purposes of diagnosis, treatment or payment" - terms which are not defined in the amendment - while S. 318 contains no such exception.

Finally, S. 318 grants individuals a more complete judicial remedy than the Ensign amendment. Unlike S. 318, the Ensign amendment requires individuals to rely on overworked government agencies to vindicate their rights, at least initially, and limits the penalties levied on violators.

It has been suggested by some that S. 318 may be unnecessary because the Americans with Disabilities Act ("ADA") already prohibits employment discrimination based on genetic information. We agree that Congress intended the ADA to prohibit genetic discrimination. Unfortunately a series of court decisions, notably Sutton v. United Airlines, Inc., 527 U.S. 471 (1999), has narrowly defined the term "disability" under 42 U.S.C. § 12102 (2) and has thereby limited the scope of ADA protections. Individuals who are symptomatic but not disabled can no longer rely on the protection of the ADA, and individuals with a genetic predisposition to an illness that has not yet manifested itself are also likely to fall outside the ADA's protected class.

While we continue to believe that the ADA should be read to prohibit genetic discrimination, we believe it is entirely appropriate for Congress to clarify its intent to outlaw this pernicious practice. At this critical juncture, new legislation is needed to eliminate any ambiguity regarding protections for this most personal of information.

Indeed, whether in the course of this genetic non-discrimination bill or as a separate initiative, Congress should strengthen the ADA by overturning Sutton and similar cases that interpret the Act too narrowly. Congress should make clear that unwarranted discrimination against anyone on the basis of disability is impermissible, whether the victim of discrimination is: (1) actually disabled; (2) symptomatic but not disabled; or (3) genetically predisposed to a disability or medical condition but not symptomatic. Enactment of a genetic non-discrimination law would be welcome in that it would extend civil rights protection to non-symptomatic individuals, but such a law would inadvertently create a gap in federal law in which discrimination against individuals in the middle category (symptomatic but not disabled) will still be permissible.

In sum, the ACLU believes that Americans should be judged on their actual abilities, not their potential disabilities. No American should lose a job or an insurance policy based on his or her genetic predisposition. We urge Congress to adopt S. 318, the Genetic Nondiscrimination in Health Insurance and Employment Act, and to take such other steps as may be necessary to ensure the privacy of genetic information.