The completion of the Human Genome Project has generated a plethora of information that is essential to the understanding of specific aspects of human biology and medicine. Alongside the goal of sequencing the entire human genome and identifying genes associated to every disease, it is now possible to determine an individual’s genetic profile in terms of disease risk and drug response. Alongside such scientific breakthroughs, a number of ethical, legal and social implications have emerged in response to the information generated from research efforts on the human genome.
It has been reported that there have been genetic discrimination cases in the workplace as well as in insurance providers, wherein different hiring procedures and insurance premium payments were observed, all mainly based on the genetic predisposition of a individual to particular diseases. It is illegal and unethical for employers to engage in genetic testing, with the intent to screen for disease or potential diseases.
A number of legislations have already been created to regulate and monitor such unethical activities in the workplace and in insurance companies. The Americans with Disabilities Act of 1990 (ADA) states that it is illegal to discriminate against individuals that show any type of disability. The ADA covers discrimination in both state and local government agencies, public places, transportation and telecommunications. During an application for a position, an employer can not inquire whether the applicant is disabled.
The employer can only ask the applicant if he is capable of performing his job responsibilities, regardless of his disability. In addition, the ADA describes that an employer can not decrease an employee’s salary because he carries a disability. It is actually mandatory that the employer provides some accommodation to the disabled employee to augment his condition in the workplace. It is also not permissible to use a blood test to perform genetic testing on employees without their consent.
Since the ADA does not protect an individuals from discrimination against genetic conditions as well as from requirements to give genetic information to the employers, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) was created to address issue on genetic discrimination. In addition, Title VII of the Civil Rights Act of 1964 explains that genetic discrimination based on racially or ethnically associated genetic diseases represent forms of illegal racial discrimination.
This Act also protects individuals from engaging in any type of discrimination or classification that is based on genetic profiling. It is also not permissible to perform a blood test to perform genetic testing on employees even if they have obtained their consent. In February 8, 2000, President Clinton endorsed an executive order that prohibits any federal department or agency that collects genetic information for use as bases in hiring and promotion. The genetic information of an individual may only be disclosed if the work output or performance of an individual is significantly affected by the genetic disorder.
If the performance of an individual remains the same in the presence of a genetic disorder, the individual need not to disclose any of his genetic information. From the point of view of the employer, he also can not ask any genetic information about his applicant or employee if the job is not affected or influenced whatsoever.
Reference
Kass L (2002): Life, Liberty, and the Defense of Dignity: The Challenge for Bioethics. New York: Blackwell Publishers. 212 pages.