The employment provisions of the Genetic Information Nondiscrimination Act (GINA) will take effect on November 21, 2009. GINA is groundbreaking legislation that addresses employees’ fear that their genetic information will result in adverse employment actions. The law prohibits (1) the use of genetic information in making employment decisions, (2) the acquisition of an employee’s genetic information, and (3) retaliation. GINA also requires that employers keep an employee’s genetic information confidential.
Employees’ have experienced genetic discrimination in the workplace. In fact, Norman-Bloodsaw v. Lawrence Berkeley Laboratory lawsuit was one such case. The lawsuit claimed that Lawrence Berkeley Laboratories violated Title VII and the Americans with Disabilities Act by testing Black job applicants for sickle cell anemia and female job applicants for pregnancy -- testing which was “neither job-related nor consistent with business necessity.” The lawsuit also claimed that the Laboratory violated its employees’ right to privacy by keeping genetic test results in the employee’s personnel files. The Court held that the Laboratory violated Title VII by singling out Black and female job applicants for nonconsensual testing to determine if those applicants would be offered employment at the lab. The Court held that the Laboratory violated the applicant’s privacy in “the non-consensual retrieval of previously unrevealed medical information.” The Court explained that “few subject areas are more personal and more likely to implicate privacy than one’s health or genetic information.” But, the Court held that the Laboratory did not violate the Americans with Disabilities Act, because the ADA does not prohibit genetic testing or the retention of genetic information. The Norman-Bloodsaw case exposed what many already feared, i.e., that genetic discrimination may not be sufficiently covered by the current federal employment discrimination laws.
The issue of genetic discrimination in the workplace became a hot topic again in 2001. The Equal Employment Opportunity Commission filed suit against Burlington Northern Santa Fe for disability discrimination in violation of the Americans with Disabilities Act. Burlington Northern was secretly testing its employees to see if the repetitive stress injuries employees were experiencing were due to a rare genetic condition or to their working conditions. Burlington Northern employees knew that they were participating in a health screening, but they did not know that they were also being genetically tested. And, employees who refused the health screens were threatened with termination. The lawsuit settled for $2.2 million. Since the case was not tried, we do not know if the EEOC would have been successful in its attempt to use a disability discrimination theory to attack the use of genetic testing in making employment decisions.
In July of 2004, the National Partnership issued a report titled Faces of Genetic Discrimination: How Genetic Discrimination Affects Real People. The report found that a majority of Americans were concerned about genetic discrimination and did not want employers to have their genetic information. As a result, employees were shielding their genetic information leading to incomplete medical histories and preventing health providers from offering the best diagnosis, treatment and preventative medicine possible. The National Partnership was not optimistic that the Americans with Disabilities Act covered genetic discrimination. So, the National Partnership challenged Congress to address the problem by stating, “Lawmakers have a critical decision to make. Without strong, meaningful federal protections, genetic discrimination will continue to be a serious problem that has a real cost for Americans – and there will be many more faces of genetic discrimination in the months and years ahead. The well-being of our nation is at stake.”
Congress accepted the National Partnership’s challenge. But, there was a strong lobby against a genetic discrimination bill from the U.S. Chamber of Commerce and other business interests who claimed that making genetic discrimination illegal would result in increased lawsuits against employers. The health insurance industry also fought hard against a genetic discrimination bill because it wanted to continue its use of genetic information in determining coverage and setting premiums. After years of being stalled in Congress, the Genetic Information Nondiscrimination Act was passed by Congress and signed by President Bush in May of 2008. Senator Ted Kennedy called the Genetic Information Nondiscrimination Act “the first major new civil rights bill of the new century.”
Employees’ have experienced genetic discrimination in the workplace. In fact, Norman-Bloodsaw v. Lawrence Berkeley Laboratory lawsuit was one such case. The lawsuit claimed that Lawrence Berkeley Laboratories violated Title VII and the Americans with Disabilities Act by testing Black job applicants for sickle cell anemia and female job applicants for pregnancy -- testing which was “neither job-related nor consistent with business necessity.” The lawsuit also claimed that the Laboratory violated its employees’ right to privacy by keeping genetic test results in the employee’s personnel files. The Court held that the Laboratory violated Title VII by singling out Black and female job applicants for nonconsensual testing to determine if those applicants would be offered employment at the lab. The Court held that the Laboratory violated the applicant’s privacy in “the non-consensual retrieval of previously unrevealed medical information.” The Court explained that “few subject areas are more personal and more likely to implicate privacy than one’s health or genetic information.” But, the Court held that the Laboratory did not violate the Americans with Disabilities Act, because the ADA does not prohibit genetic testing or the retention of genetic information. The Norman-Bloodsaw case exposed what many already feared, i.e., that genetic discrimination may not be sufficiently covered by the current federal employment discrimination laws.
The issue of genetic discrimination in the workplace became a hot topic again in 2001. The Equal Employment Opportunity Commission filed suit against Burlington Northern Santa Fe for disability discrimination in violation of the Americans with Disabilities Act. Burlington Northern was secretly testing its employees to see if the repetitive stress injuries employees were experiencing were due to a rare genetic condition or to their working conditions. Burlington Northern employees knew that they were participating in a health screening, but they did not know that they were also being genetically tested. And, employees who refused the health screens were threatened with termination. The lawsuit settled for $2.2 million. Since the case was not tried, we do not know if the EEOC would have been successful in its attempt to use a disability discrimination theory to attack the use of genetic testing in making employment decisions.
In July of 2004, the National Partnership issued a report titled Faces of Genetic Discrimination: How Genetic Discrimination Affects Real People. The report found that a majority of Americans were concerned about genetic discrimination and did not want employers to have their genetic information. As a result, employees were shielding their genetic information leading to incomplete medical histories and preventing health providers from offering the best diagnosis, treatment and preventative medicine possible. The National Partnership was not optimistic that the Americans with Disabilities Act covered genetic discrimination. So, the National Partnership challenged Congress to address the problem by stating, “Lawmakers have a critical decision to make. Without strong, meaningful federal protections, genetic discrimination will continue to be a serious problem that has a real cost for Americans – and there will be many more faces of genetic discrimination in the months and years ahead. The well-being of our nation is at stake.”
Congress accepted the National Partnership’s challenge. But, there was a strong lobby against a genetic discrimination bill from the U.S. Chamber of Commerce and other business interests who claimed that making genetic discrimination illegal would result in increased lawsuits against employers. The health insurance industry also fought hard against a genetic discrimination bill because it wanted to continue its use of genetic information in determining coverage and setting premiums. After years of being stalled in Congress, the Genetic Information Nondiscrimination Act was passed by Congress and signed by President Bush in May of 2008. Senator Ted Kennedy called the Genetic Information Nondiscrimination Act “the first major new civil rights bill of the new century.”
GINA’s passage will hopefully make employees less reluctant to participate in genetic and genomic research. With additional research into the genetic aspects of health and disease, scientists may be able to develop more personalized screening, diagnosis and treatment for patients.
0 comments:
Post a Comment