No Genes in the Workplace

On May 21, 2008, President Bush signed into law the Genetic Information Non-Discrimination Act of 2008. This act prohibits employers and insurers from discriminating against individuals based on an individual's genetic information. The Act, which, on the employment side, is patterned after Title VII of the Civil Rights Act of 1964, creates a new federal cause of action for genetic discrimination, providing for jury trials, compensatory damages and punitive damages.

The Need for Another Discrimination Law

Genetic discrimination is not currently a rampant concern in the workplace. Few employers conduct genetic testing. However, recent medical advances, including deciphering the sequence of the human genome, have opened the door for increased genetic testing. The concern for potential discrimination by either insurance companies or employers has led many individuals to avoid even private genetic testing and its potential benefits for fear that the results may become known to their insurer or employer and cost them insurance or employment opportunities. For years, the medical community has been pushing for greater protection of genetic testing results so that individuals could undergo testing and take advantage of the medical benefits of such testing without fear that the results would be used against them by their employers, insurers or others.

In enacting GINA, Congress recognized the potential benefits associated with genetic testing. It allows for more personalized and effective medicine. It may allow individuals to take preventative steps to reduce the likelihood that they will contract a particular disease or disorder, and it may result in earlier detection of disease. It also will allow for greater medical advances in the development of new treatments and therapies that may be safer and more effective than current treatments and therapies.

Congress also recognized a need to allay some of the fears that currently are limiting the use of genetic testing. Between 1907 and 1981, a number of states had adopted laws providing for sterilization of persons with certain genetic “defects.” As further evidence of the need for legislation, Congress cited a single case in which an employer had engaged in pre-employment genetic screening, Norman-Bloodsaw v. Lawrence Berkeley Laboratory, 135 F.3d 1260 (9th Cir. 1998), and concluded: “Federal legislation establishing a national and uniform basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research and new therapies.” Genetic Information Non-Discrimination Act, H.R. 493, 2.

GINA's Provisions

Insurance

GINA amends the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act, the Internal Revenue Code of 1986 and Title XVIII of the Social Security Act. It prohibits group health plans and health insurance issuers offering health insurance coverage in connection with a group health plan from: 1) requesting or requiring an individual or a family member of such individual to undergo a genetic test; 2) requesting, requiring or purchasing genetic information with respect to any individual prior to such individual's enrollment under the plan or coverage in connection with such enrollment; 3) requesting, requiring, or purchasing genetic information for underwriting purposes; and 4) adjusting premium or contribution amounts for the group covered under such plan on the basis of genetic information.

“Genetic Information” includes information about the individual's genetic tests, the genetic tests of family members and the manifestation of a disease or disorder in family members of the individual. A family member includes first, second, third and fourth degree relatives.) “Genetic Information” also includes any request for, or receipt of, genetic services or participation in clinical research that includes genetic services by the individual or any family member. It does not include information about the gender or age of an individual.

GINA prohibits a health insurance issuer that offers health insurance coverage in the individual market from: 1) establishing rules for the eligibility or continued eligibility of any individual to enroll in individual health insurance coverage based on genetic information; 2) adjusting premiums or contribution amounts for an individual based on genetic information concerning the individual or family member; 3) imposing any pre-existing condition exclusion on the basis of genetic information; 4) requesting or requiring an individual or an individual's family member to undergo a genetic test; and 5) requesting, requiring or purchasing genetic information with respect to any individual prior to such individual's enrollment under the plan in connection with such enrollment.

The act further prohibits an issuer of a Medicare supplemental policy from: 1) denying or conditioning the issuance or effectiveness of the policy based on an individual's genetic information; 2) discriminating in the pricing of the policy (including the adjustment of premium rates) of an individual based on the individual's genetic information; 3) requesting or requiring an individual or an individual's family member to undergo a genetic test; 4) requesting, requiring or purchasing genetic information for underwriting purposes; and 5) requesting, requiring or purchasing genetic information with respect to any individual prior to such individual's enrollment under the policy in connection with such enrollment.

GINA does not prohibit insurance companies from taking action based on the manifestation of a disease or disorder, but such manifestation in one individual cannot be used against a family member.

Employment

While many states had already enacted some sort of prohibition against genetic discrimination in the insurance context, fewer states had a corresponding prohibition in employment. GINA provides a federal prohibition against genetic discrimination by employers. GINA's employment provisions have three main prohibitions: a prohibition against discrimination; a prohibition against obtaining genetic information; and a prohibition against disclosing any genetic information that an employer does have.

Discrimination

GINA's employment discrimination provisions are modeled after Title VII of the Civil Rights Act of 1964. GINA prohibits employers, employment agencies and labor unions from discharging, failing or refusing to hire any employee or otherwise discriminating against (or causing an employer to discriminate against) any employee with respect to compensation, training opportunities or other terms, conditions, or privileges of employment because of genetic information. Unlike Title VII, however, GINA does not provide a cause of action for disparate impact discrimination. In other words, an employer must intentionally discriminate to be liable for genetic discrimination; it is not enough that an employer s practices disproportionately affect individuals with certain genetic information.

Like Title VII, GINA also prohibits retaliation against anyone who opposes an unlawful practice, files a charge or participates in any investigation, proceeding or hearing under GINA.

Privacy of Genetic Information

GINA also prohibits employers, employment agencies and labor unions from requesting, requiring or purchasing genetic information with respect to an employee or family member of an employee. Employers may not require genetic testing. There are several exceptions. It is not unlawful under GINA to request, require or purchase genetic information in the following circumstances: 1) where an employer inadvertently requests or requires family medical history; 2) where an employer requests or requires family medical history to comply with the certification provisions of the Family and Medical Leave Act (“FMLA”) or a similar state law; 3) where an employer purchases commercially and publicly available documents, such as newspapers, magazines or books (but not medical databases or court records) that include family medical history; 4) where the employer conducts DNA analysis for law enforcement purposes as a forensic laboratory or for purposes of human remains identification, but only to the extent such information is used for analysis of DNA identification markers for quality control to detect sample contamination; 5) where health or genetic services are offered by the employer; or 6) where the information is to be used for genetic monitoring of the biological effects of toxic substances in the workplace.

In cases where an employer offers health or genetic services, requests for genetic information are allowed only if: 1) the employee provides prior, knowing, voluntary and written authorization; 2) only the employee (or family member if the family member is receiving genetic services) and the licensed health-care professional or board certified genetic counselor involved in providing such services receive individually identifiable information concerning the results of such services; and 3) any individually identifiable genetic information provided is only available for purposes of such services and shall not be provided to the employer except in aggregate terms that do not disclose the identity of specific employees.

Genetic information may be requested with respect to genetic monitoring in the workplace only if: 1) the employer provides written notice of the genetic monitoring to the employee; 2) the employee provides prior, knowing, voluntary and written authorization or the genetic monitoring is required by federal or state law; 3) the employee is informed of individual monitoring results; 4) the monitoring is in compliance with any federal genetic monitoring regulations (including any under OSHA), the Federal Mine Safety and Health Act of 1977 and the Atomic Energy Act of 1954) or state genetic monitoring regulations implemented under the authority of OSHA; and 5) the employer (excluding any licensed health care professional or board certified genetic counselor that is involved) receives the results of the monitoring only in aggregate terms that do not disclose the identity of specific employees.

Disclosure

GINA places confidentiality limitations on any genetic information that an employer might possess. Any genetic information that an employer, employment agency or labor organization possesses must be maintained on separate forms and in separate medical files and must be treated as a confidential medical record (similar to the ADA's requirements for medical information). An employer may not disclose such genetic information except: 1) to the employee (or family member if the family member is receiving the genetic services) at the written request of the employee; 2) to an occupational or other health researcher if the research is conducted in compliance with the regulations and protections provided for under part 46 of Title 45 of the Code of Federal Regulations; 3) in response to an order of a court, but only to the extent expressly authorized by such order (and the employer must inform the employee of the court order and the genetic information that was disclosed); 4) to government officials who are investigating compliance with this title, if the information is relevant to the investigation; 5) to the extent such disclosure is made in connection with the employee's compliance with FMLA certification provisions; or 6) to a federal, state or local public health agency but only with regard to information regarding the manifestation of a contagious disease that presents an imminent hazard of death or life threatening illness and the employee whose family member(s) are the subject of disclosure are notified of such disclosure. There is no provision allowing employers to disclose genetic information during routine discovery in litigation, absent a court order.

Enforcement

GINA is scheduled to take effect November 2009. The EEOC is expected to issue regulations prior to that time. The enforcement procedures and remedies available under GINA are the same as those provided under Title VII (or those provided under the Government Employee Rights Act of 1991, the Congressional Accountability Act of 1995, Chapter 5 of title 3, United States Code, or Section 717 of the Civil Rights Act of 1964 for those employees covered under these statutes). Individuals asserting genetic discrimination are required to file a charge with the EEOC. After receiving a notice of right to sue, individuals may file a complaint in court. Individuals may recover back pay, compensatory damages, punitive damages and attorney fees along with equitable relief.

Be Careful with Family Medical Information

Although employers that do not currently request genetic information may believe that they need not be concerned with GINA, the act protects much more than information obtained by genetic testing. Under GINA, “genetic information” includes information about a family member's disease or disorder. Even if employers do not request genetic information, they may obtain such information inadvertently. Employers may learn of “genetic information” from “water cooler” talk. Employees may share information about a family member's condition either as part of a request for leave, or other accommodation from the employer, or simply in conversation. Moreover, the private right of action provided under GINA may lead employees to test the limits of the law. Employers who have knowledge of an employee's genetic information (including a family member's disease or disorder) could face claims that subsequent adverse actions are the result of that knowledge, much as they currently face claims under the ADA when they have knowledge of an individual's medical condition or disability. As with other forms of discrimination, employers can take steps to help prevent such claims. Employers should amend their policies to prohibit genetic discrimination just as they prohibit other forms of discrimination. They should also train supervisors with respect to the prohibitions contained in GINA and the information they can and cannot discuss, particularly concerning family member's medical conditions. The “innocent,” caring supervisor who asks follow-up questions out of concern for the employee whose mother has just been diagnosed with cancer may cross the line of prohibition and set up a future claim of discrimination.

Employers must also consider the information they request in conjunction with sick leave or other absences. Although GINA allows employers to obtain family medical information in conjunction with FMLA certification, there is currently not a similar exception in connection with non-FMLA forms of leave. If an employer generously provides more leave than that allowed by the FMLA or a state equivalent, the employer may not be permitted to request certification for absences caused by a family member's illness.

Finally, an employer must be sure that any genetic information it might possess is maintained confidentially. Employers should be cautious about disclosing any genetic or medical information to anyone, unless specifically allowed by GINA.

Conclusion

Although genetic discrimination is not believed to be widely prevalent in the workplace, the new Act will likely create additional employment litigation. GINA adds one more arrow to the employee's quiver and one more potential trap for the unwary employer.

Patricia Anderson Pryor, a member of this newsletter's Board of Editors, is a partner in the Labor and Employment Department at Taft, Stettinius & Hollister LLP. Ms. Pryor represents and advises employers in all forms of litigation, and dispute resolution, including mediation and arbitration, and in managing all aspects of the employment relationship. She is a frequent speaker at legal seminars and to employers and professional groups and has been featured on the radio broadcast, Employment Straight Talk.

If asked whether they discriminate against employees based on their genetic information, the vast majority of employers would say they do not know anything about their employees' genetic information. Thus, it would appear that these employers need not be concerned about the newly passed Genetic Information Nondiscrimination Act (“GINA”). If you asked those same employers, however, if they discriminate against employees based on religion, national origin, disability, sex or race, the answer would likely be similar, and yet a large percentage of those employers have been sued or had a charge filed against them with the Equal Employment Opportunity Commission (“EEOC”) for some sort of discrimination.

Genetic information is not just information obtained through genetic testing. It includes information about a family member's disease or disorder, placing employers at risk when they ask for (or obtain) such information in connection with leave requests or even during innocent conversations at the water cooler.

The 'GINA'

On May 21, 2008, President Bush signed into law the Genetic Information Non-Discrimination Act of 2008. This act prohibits employers and insurers from discriminating against individuals based on an individual's genetic information. The Act, which, on the employment side, is patterned after Title VII of the Civil Rights Act of 1964, creates a new federal cause of action for genetic discrimination, providing for jury trials, compensatory damages and punitive damages.

The Need for Another Discrimination Law

Genetic discrimination is not currently a rampant concern in the workplace. Few employers conduct genetic testing. However, recent medical advances, including deciphering the sequence of the human genome, have opened the door for increased genetic testing. The concern for potential discrimination by either insurance companies or employers has led many individuals to avoid even private genetic testing and its potential benefits for fear that the results may become known to their insurer or employer and cost them insurance or employment opportunities. For years, the medical community has been pushing for greater protection of genetic testing results so that individuals could undergo testing and take advantage of the medical benefits of such testing without fear that the results would be used against them by their employers, insurers or others.

In enacting GINA, Congress recognized the potential benefits associated with genetic testing. It allows for more personalized and effective medicine. It may allow individuals to take preventative steps to reduce the likelihood that they will contract a particular disease or disorder, and it may result in earlier detection of disease. It also will allow for greater medical advances in the development of new treatments and therapies that may be safer and more effective than current treatments and therapies.

Congress also recognized a need to allay some of the fears that currently are limiting the use of genetic testing. Between 1907 and 1981, a number of states had adopted laws providing for sterilization of persons with certain genetic “defects.” As further evidence of the need for legislation, Congress cited a single case in which an employer had engaged in pre-employment genetic screening, Norman-Bloodsaw v. Lawrence Berkeley Laboratory , 135 F.3d 1260 (9th Cir. 1998), and concluded: “Federal legislation establishing a national and uniform basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research and new therapies.” Genetic Information Non-Discrimination Act, H.R. 493, 2.

GINA's Provisions

Insurance

GINA amends the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act, the Internal Revenue Code of 1986 and Title XVIII of the Social Security Act. It prohibits group health plans and health insurance issuers offering health insurance coverage in connection with a group health plan from: 1) requesting or requiring an individual or a family member of such individual to undergo a genetic test; 2) requesting, requiring or purchasing genetic information with respect to any individual prior to such individual's enrollment under the plan or coverage in connection with such enrollment; 3) requesting, requiring, or purchasing genetic information for underwriting purposes; and 4) adjusting premium or contribution amounts for the group covered under such plan on the basis of genetic information.

“Genetic Information” includes information about the individual's genetic tests, the genetic tests of family members and the manifestation of a disease or disorder in family members of the individual. A family member includes first, second, third and fourth degree relatives.) “Genetic Information” also includes any request for, or receipt of, genetic services or participation in clinical research that includes genetic services by the individual or any family member. It does not include information about the gender or age of an individual.

GINA prohibits a health insurance issuer that offers health insurance coverage in the individual market from: 1) establishing rules for the eligibility or continued eligibility of any individual to enroll in individual health insurance coverage based on genetic information; 2) adjusting premiums or contribution amounts for an individual based on genetic information concerning the individual or family member; 3) imposing any pre-existing condition exclusion on the basis of genetic information; 4) requesting or requiring an individual or an individual's family member to undergo a genetic test; and 5) requesting, requiring or purchasing genetic information with respect to any individual prior to such individual's enrollment under the plan in connection with such enrollment.

The act further prohibits an issuer of a Medicare supplemental policy from: 1) denying or conditioning the issuance or effectiveness of the policy based on an individual's genetic information; 2) discriminating in the pricing of the policy (including the adjustment of premium rates) of an individual based on the individual's genetic information; 3) requesting or requiring an individual or an individual's family member to undergo a genetic test; 4) requesting, requiring or purchasing genetic information for underwriting purposes; and 5) requesting, requiring or purchasing genetic information with respect to any individual prior to such individual's enrollment under the policy in connection with such enrollment.

GINA does not prohibit insurance companies from taking action based on the manifestation of a disease or disorder, but such manifestation in one individual cannot be used against a family member.

Employment

While many states had already enacted some sort of prohibition against genetic discrimination in the insurance context, fewer states had a corresponding prohibition in employment. GINA provides a federal prohibition against genetic discrimination by employers. GINA's employment provisions have three main prohibitions: a prohibition against discrimination; a prohibition against obtaining genetic information; and a prohibition against disclosing any genetic information that an employer does have.

Discrimination

GINA's employment discrimination provisions are modeled after Title VII of the Civil Rights Act of 1964. GINA prohibits employers, employment agencies and labor unions from discharging, failing or refusing to hire any employee or otherwise discriminating against (or causing an employer to discriminate against) any employee with respect to compensation, training opportunities or other terms, conditions, or privileges of employment because of genetic information. Unlike Title VII, however, GINA does not provide a cause of action for disparate impact discrimination. In other words, an employer must intentionally discriminate to be liable for genetic discrimination; it is not enough that an employer s practices disproportionately affect individuals with certain genetic information.

Like Title VII, GINA also prohibits retaliation against anyone who opposes an unlawful practice, files a charge or participates in any investigation, proceeding or hearing under GINA.

Privacy of Genetic Information

GINA also prohibits employers, employment agencies and labor unions from requesting, requiring or purchasing genetic information with respect to an employee or family member of an employee. Employers may not require genetic testing. There are several exceptions. It is not unlawful under GINA to request, require or purchase genetic information in the following circumstances: 1) where an employer inadvertently requests or requires family medical history; 2) where an employer requests or requires family medical history to comply with the certification provisions of the Family and Medical Leave Act (“FMLA”) or a similar state law; 3) where an employer purchases commercially and publicly available documents, such as newspapers, magazines or books (but not medical databases or court records) that include family medical history; 4) where the employer conducts DNA analysis for law enforcement purposes as a forensic laboratory or for purposes of human remains identification, but only to the extent such information is used for analysis of DNA identification markers for quality control to detect sample contamination; 5) where health or genetic services are offered by the employer; or 6) where the information is to be used for genetic monitoring of the biological effects of toxic substances in the workplace.

In cases where an employer offers health or genetic services, requests for genetic information are allowed only if: 1) the employee provides prior, knowing, voluntary and written authorization; 2) only the employee (or family member if the family member is receiving genetic services) and the licensed health-care professional or board certified genetic counselor involved in providing such services receive individually identifiable information concerning the results of such services; and 3) any individually identifiable genetic information provided is only available for purposes of such services and shall not be provided to the employer except in aggregate terms that do not disclose the identity of specific employees.

Genetic information may be requested with respect to genetic monitoring in the workplace only if: 1) the employer provides written notice of the genetic monitoring to the employee; 2) the employee provides prior, knowing, voluntary and written authorization or the genetic monitoring is required by federal or state law; 3) the employee is informed of individual monitoring results; 4) the monitoring is in compliance with any federal genetic monitoring regulations (including any under OSHA), the Federal Mine Safety and Health Act of 1977 and the Atomic Energy Act of 1954) or state genetic monitoring regulations implemented under the authority of OSHA; and 5) the employer (excluding any licensed health care professional or board certified genetic counselor that is involved) receives the results of the monitoring only in aggregate terms that do not disclose the identity of specific employees.

Disclosure

GINA places confidentiality limitations on any genetic information that an employer might possess. Any genetic information that an employer, employment agency or labor organization possesses must be maintained on separate forms and in separate medical files and must be treated as a confidential medical record (similar to the ADA's requirements for medical information). An employer may not disclose such genetic information except: 1) to the employee (or family member if the family member is receiving the genetic services) at the written request of the employee; 2) to an occupational or other health researcher if the research is conducted in compliance with the regulations and protections provided for under part 46 of Title 45 of the Code of Federal Regulations; 3) in response to an order of a court, but only to the extent expressly authorized by such order (and the employer must inform the employee of the court order and the genetic information that was disclosed); 4) to government officials who are investigating compliance with this title, if the information is relevant to the investigation; 5) to the extent such disclosure is made in connection with the employee's compliance with FMLA certification provisions; or 6) to a federal, state or local public health agency but only with regard to information regarding the manifestation of a contagious disease that presents an imminent hazard of death or life threatening illness and the employee whose family member(s) are the subject of disclosure are notified of such disclosure. There is no provision allowing employers to disclose genetic information during routine discovery in litigation, absent a court order.

Enforcement

GINA is scheduled to take effect November 2009. The EEOC is expected to issue regulations prior to that time. The enforcement procedures and remedies available under GINA are the same as those provided under Title VII (or those provided under the Government Employee Rights Act of 1991, the Congressional Accountability Act of 1995, Chapter 5 of title 3, United States Code, or Section 717 of the Civil Rights Act of 1964 for those employees covered under these statutes). Individuals asserting genetic discrimination are required to file a charge with the EEOC. After receiving a notice of right to sue, individuals may file a complaint in court. Individuals may recover back pay, compensatory damages, punitive damages and attorney fees along with equitable relief.

Be Careful with Family Medical Information

Although employers that do not currently request genetic information may believe that they need not be concerned with GINA, the act protects much more than information obtained by genetic testing. Under GINA, “genetic information” includes information about a family member's disease or disorder. Even if employers do not request genetic information, they may obtain such information inadvertently. Employers may learn of “genetic information” from “water cooler” talk. Employees may share information about a family member's condition either as part of a request for leave, or other accommodation from the employer, or simply in conversation. Moreover, the private right of action provided under GINA may lead employees to test the limits of the law. Employers who have knowledge of an employee's genetic information (including a family member's disease or disorder) could face claims that subsequent adverse actions are the result of that knowledge, much as they currently face claims under the ADA when they have knowledge of an individual's medical condition or disability. As with other forms of discrimination, employers can take steps to help prevent such claims. Employers should amend their policies to prohibit genetic discrimination just as they prohibit other forms of discrimination. They should also train supervisors with respect to the prohibitions contained in GINA and the information they can and cannot discuss, particularly concerning family member's medical conditions. The “innocent,” caring supervisor who asks follow-up questions out of concern for the employee whose mother has just been diagnosed with cancer may cross the line of prohibition and set up a future claim of discrimination.

Employers must also consider the information they request in conjunction with sick leave or other absences. Although GINA allows employers to obtain family medical information in conjunction with FMLA certification, there is currently not a similar exception in connection with non-FMLA forms of leave. If an employer generously provides more leave than that allowed by the FMLA or a state equivalent, the employer may not be permitted to request certification for absences caused by a family member's illness.

Finally, an employer must be sure that any genetic information it might possess is maintained confidentially. Employers should be cautious about disclosing any genetic or medical information to anyone, unless specifically allowed by GINA.

Conclusion

Although genetic discrimination is not believed to be widely prevalent in the workplace, the new Act will likely create additional employment litigation. GINA adds one more arrow to the employee's quiver and one more potential trap for the unwary employer.

Patricia Anderson Pryor, a member of this newsletter's Board of Editors, is a partner in the Labor and Employment Department at Taft, Stettinius & Hollister LLP. Ms. Pryor represents and advises employers in all forms of litigation, and dispute resolution, including mediation and arbitration, and in managing all aspects of the employment relationship. She is a frequent speaker at legal seminars and to employers and professional groups and has been featured on the radio broadcast, Employment Straight Talk.