Genetic Information Nondiscrimination Act (GINA)

Genetic Information Nondiscrimination Act (GINA)


By: Tim Godlove

As a society, we have to ask if we can collect information that reveals individual differences and still continue to treat all individuals the same. How should society treat employers using genetic information in employment decisions, not in order to discriminate, but instead to prevent identity fraud? Apprehension over the potential for misuse of  personal health information and genetic data by employers is not entirely new. In response to these concerns, the federal govemment enacted the Genetic Information Nondiscrimination Act (GINA) of 2008, a law signed by President George W. Bush and designed to provide protection not only from the misuse of genetic data and family health history but also from the initial acquistion of such data.

By genetic information, the Act means test results from the individual or relatives up to and including fourth-degree  relationships or the appearance of a genetic disease or disorder in family members. Specifically, the Act prohibits health insurers (but not insurers for life, disability, or long-term care) from requesting or requiring a person (unless he or she is a member of the military) to undergo a genetic test, and from using genetic information to determine enrollment in the insurance plan or the premiums. It also prohibits employers from using genetic information to make decisions about hiring, firing, and other terms of employment.

There is clearly a need for laws like GINA. Genetic testing is now available for more than fifteen hundred conditions, and it generates special ethical concern for several reasons. First, genetic tests expand greatly the power of medical tests. Second, genetic testing threatens our privacy. Testing can produce a tremendous amount of very personal information about an individual from an easily obtained source, usually blood. This information can easily be stored on a microchip or in a computerized database making it all too easy for employers, government agencies, and insurance companies to gain access to a great deal of genetic private information and use it to discriminate against us. Third, the genetic testing of one individual often threatens the privacy of other individuals as well if a person tests positive for an inherited disease or predisposition for the disease. Further, other members within the family, including relatives and children can be at risk of developing the disease or of having a predisposition toward it or of being carriers of the disease-causing  gene. An inherited genetic defect is seldom a purely private matter; it is almost always a family matter as well.

Finally, the public grasp of genetic testing is fraught with misunderstanding. Many believe genes are the Holy Grail - the key to the great mysteries of human life, the determining factors in human behavior, and even the explanation of art, morality, religion, and culture. Some say we are nothing but our genes. Moreover, in the minds of many, molecular biology will enable us to predict and control the future.

GINA became fully effective in November 2009 for the purpose of prohibiting the improper use of genetic information in health insurance and employment. GINA applies to employers with 15 or more employees, including private employers, employment agencies, labor unions, and joint labor-management training programs. Under GINA, the Equal Employment Opportunity Commission (EEOC) definition of “genetic information” includes information about an individual’s family medical history. The law prohibits an employer from asking about family medical history during an interview, or at any time after the employee is hired. It also prohibits employers from gathering information about the employee through individual genetic tests or genetic tests of a family member. 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. The law has two parts:

  • Title I prohibits health insurance providers from discrimination against an individual based on genetic testing. This makes it illegal for health insurance providers to use or require genetic information to make decisions about a person’s insurance eligibility or coverage.
  • Title II forbids discrimination on the basis of genetic information when it comes to any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term or condition of employment.

An employer may never use genetic information to make an employment decision because genetic information does not tell the employer anything about someone’s current ability to work.

Both GINA and Health Insurance Portability and Accountability Act (HIPAA) protect the confidentiality of genetic information. The privacy rules aim more to prevent discriminatory uses of confidential genetic data by insurers and employers than to protect the confidentiality itself.

Prior to GINA, there was some federal attention to the privacy of genetic information. In 1996, HIPAA was passed to address concerns about discrimination based on a person's health information. HIPAA sets standards for protecting the privacy of individually identifiable health information so as to prevent its inappropriate use and disclosure. HIPAA was the first step toward restricting the use of genetic information by limiting its use in setting insurance premiums and determining a person's eligibility for benefits in group health plans.

GINA requires that the disclosure of protected genetic health-care information be governed by HIPAA. The law also provides participants with injunctive and equitable relief for violations of the confidentiality provisions of GINA. For violations of the privacy provisions of the law, civil monetary penalties of $100 per day up to $250,000 and ten years in prison could be assessed.

GINA records must be retained by the employer for a period of one year from the date of the making of the record or the personnel action involved, whichever occurs later. In the case of involuntary termination of an employee, the personnel records of the individual terminated must be kept for a period of one year from the date of termination. Where a charge of discrimination has been filed, or an action has been brought by the EEOC or the U.S. attorney general against an employer under GINA, the employer must preserve all personnel records relevant to the charge or action until final disposition of the charge or the action.

The passage of GINA has important implications for patients and their families. The feasibility of a National Health Information Infrastructure (NHII) becomes increasingly greater as communication and information sharing technology becomes increasingly sophisticated.  The three most critical points to address in creating such a system are:

  • confidentiality of patient records/security breaches
  • viability of large-scale data interchange and
  • the ability to synchronize national standards and regulations.

The increasing use of electronic health records over the past decade or so has brought up numerous ethical concerns about the confidentiality of patient data. Many Americans are afraid that their personal and “private” medical information might be used against them to limit their insurance coverage or ruin their chances of a getting a job or promotion. 

As organizations have begun to rely more and more on electronic health records, the ability to keep people with bad intentions at bay has decreased. It is a lot easier to guard a file cabinet from an individual trying to break in than it is to guard an entire electronic database from potentially hundreds of people who want to hack in for whatever reason (reporters, insurance agents, etc.). But it is a lot cheaper to store health records electronically, and it also takes up a lot less room, so these benefits often outweigh the security disadvantages. 

Human genome research is creating new opportunities for a more individualized approach to the screening, diagnosis, and treatment of rare and common diseases. Until recently, many people were concerned that information resulting from their genetic testing would be used against them by their insurers and/or employers. With the passage of GINA in May 2008, U.S. citizens now have federal protections against insurance and employment discrimination based on their genetic information.

Although GINA has been the law throughout the land for over five years, the public is largely unaware of its provisions. It is the duty of public officials and health care professionals, to inform American citizens about their choices, options, and right of genetic testing. With the advancements in technological data gathering, it is equally important for Information Security and Health Care Information Security and Privacy Practitioners to understand the benefits and necessity of genetic testing, as well as the rights and protections secured by GINA.



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