What is The Genetic Information Non-Discrimination Act of 2008?

The Genetic Information Non-Discrimination Act or GINA for short is a federal law that makes it illegal to discriminate against employees or job applicants based upon their genetic information. Passed in 2008 and placed into effect during the following year, GINA prohibits the use of genetic information for making employment decisions, and restricts employers and other business entities or organizations covered by the law (employment agencies, apprenticeship programs, joint labor-management training programs, and labor organizations) from requiring, requesting, or purchasing the genetic information of American citizens. Moreover, GINA also strictly prohibits the disclosure of this genetic information. Under GINA, discriminating against an employee based upon their genetic information is strictly forbidden under the law.

One of the primary reasons GINA was passed was to protect American citizens and employees from discrimination in the context of receiving healthcare benefits. To illustrate this point, genetic information can be used to determine eligibility for healthcare coverage, underwriting, and premium setting decisions. Furthermore, GINA prohibits organizations and business entities from requiring that an employee provide the genetic information of their family in the form of family medical records or history. While healthcare is one of the industries in which genetic information is most applicable, GINA also prohibits genetic information from being used in the context of employment decisions including hiring, promoting, firing, paying, or assigning specific job functions to employees, or using genetic information to avoid hiring a prospective employee.

How is the term “genetic information” defined under GINA?

Under GINA, genetic information is defined to mean “information about an individual’s genetic tests and the genetic tests of an individual’s family members, as well as information about the manifestation of a disease or disorder in an individual’s family members (i.e. family medical history). Family medical history is included in the definition of genetic information because it is often used to determine whether someone has an increased risk of getting a disease, disorder, or condition in the future. Genetic information also includes an individual’s request for, or receipt of, genetic services, or the participation in clinical research that includes genetic services by the individual or a family member of the individual, and the genetic information of a fetus carried by an individual or by a pregnant woman who is a family member of the individual and the genetic information of any embryo legally held by the individual or family member using an assisted reproductive technology”.

Are there any exceptions to the protection offered by GINA?

While GINA protects American employees and citizens from being discriminated against on the basis of their genetic information, there are some notable exceptions to this protection. These exceptions include the following:

• Inadvertent or accidental acquisition of an individual genetic information does not constitute a violation of GINA. For example, a situation in which a manager may overhear an employee discussing a family member’s illness while at the workplace.
• Genetic information that may be obtained in the context of health or genetic services such as health or wellness programs that may be offered by employers on a voluntary basis, subject to specific requirements.
  Family medical history that may have been acquired as a part of the certification for Family and Medical Leave Act or FMLA leave, or other forms of leave under similar state or local laws, in which an employee is requesting leave to take care of a family member with a serious health condition.
• Genetic information that has been acquired publicly and commercially available through means or documents such as newspapers, so long as an employer is not searching these sources with the specific intent to acquire the genetic information of an employee, such as online chat groups or forums that specifically focus on issues related to genetic testing and discrimination.
• Genetic information that may have been acquired through a genetic monitoring program for the purposes of monitoring the biological effects of toxic substances on employees in the workplace, where said monitoring is required by law or other carefully defined conditions, such as a monitoring program that is voluntary.
• Acquisition of an individual’s genetic information by employees who engage in DNA testing for law enforcement purposes, such as a forensics lab employee, where the genetic information may only be used for the analysis of DNA markers in the context of quality control to detect sample contamination.
• GINA does not apply to businesses or organizations that employ less than 15 people.
• GINA also does not protect the genetic information of American citizens in relation to other forms of insurance such as life, long-term care, or disability insurance.
• Healthcare insurance providers are permitted to obtain an individual’s genetic information incidentally without penalty under GINA.

What are the requirements of health insurance providers under GINA?

Under GINA, healthcare insurance providers are prohibited from engaging in a variety of specific discriminatory practices. These practices include:

• Healthcare insurance providers are prohibited from establishing rules for eligibility or adjusting premiums on the basis of genetic information.
• Healthcare insurance providers are prohibited from requesting or requiring a genetic test from an individual or their family members, except in instances where a written request for a genetic test is used in conjunction with voluntary research that has been federally approved. In such cases, there are protections that are in place in regard to non-compliance or retaliation.
• Healthcare insurance providers are prohibited from requesting, requiring, or purchasing an individual’s genetic information before or after they enroll in a healthcare plan.
• Healthcare insurance providers are prohibited from obtaining or accessing the results of an individual’s genetic tests for any reason other than payment purposes. When accessing an individual’s genetic test results for payment purposes, healthcare insurance providers are only permitted to request the minimum information that is necessary to fulfill payment purposes.
• Healthcare insurance providers are prohibited from exercising any forms of preexisting condition clauses unless or until the disease condition of an individual is manifest.
• Healthcare insurance providers are prohibited from determining the specific rules for the creation, renewal, or replacement of an individual’s health insurance contract.

What are the penalties for violating GINA?

The penalties for non-compliance with GINA can range from monetary fines of up to $300,000 when per instance in which non-compliance is found to be intentional, and monetary fines of $2500 to $500,000 per instance in which non-compliance is found to be unintentional, depending on the scope and severity of said unintentional offenses. Furthermore, the law also extends the protections of confidentiality that are given to individuals under the Health Insurance Portability and Accountability Act or HIPAA, which protects genetic information that may be disclosed or otherwise used by a healthcare insurance provider or supplemental Medicare policy. Violations of GINA are enforced by the Equal Employment Opportunity Commission or EEOC.

GINA was passed to help reduce and lessen potential discrimination that can result from an individual’s genetic information or the genetic information of their family members. In conjunction with HIPPA, GINA provides protections to American citizens in regard to the ways in which they engage with the U.S. healthcare system. While GINA is most applicable to healthcare, it also protects individuals from genetic information discrimination in the context of employment. Through laws such as GINA, individuals who feel as though they have been discriminated against based on their genetic information have a means of obtaining justice.