The Genetic Information Nondiscrimination Act

Is your business considered a "Small Business" by any of the various regulatory agencies of the federal government? Are you employed by a business that is considered a "Small Business" by both the federal and your state government? Do you even know, much less care about, how the ever-increasing number of new workplace regulations can affect you as an employer or employee?

These questions may affect you, as an employer or as an employee, more than you might expect. As of 10 January 2011 employers must comply, and be able to demonstrate such compliance upon demand, with yet another federally-mandated set of employment and workplace regulations as defined by the Genetic Information Nondiscrimination Act of 2008 (GINA).

The Equal Employment Opportunity Commission ("EEOC"), the agency charged with the enforcement of GINA, defines "genetic information" to be

"... 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 ..."

and further states that "genetic discrimination" is

"... 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 doesn't tell the employer anything about someone's current ability to work ..." [emphasis in the original]

These new regulations allow for six general exceptions in which an employer may gain access to an employee's genetic testing and family medical information that would otherwise be considered an employee's "protected information" as defined under the provisions of the Health Insurance Portability and Accountability Act (HIPAA).

1. "Inadvertent Acquisition," which is defined as genetic information acquired by an employer incidental to an otherwise non-regulated activity, such a ordinary conversation or information that is voluntarily published by the employee on a publicly-accessible social media site (e.g. Facebook or Twitter).

2. Medical and/or genetic information that is obtained during an employee's voluntary participation in an employer-sponsored activity such as a Wellness Program.

3. Employee and/or family medical history that is submitted to an employer in support of an employee's request related to the Family and Medical Leave Act (FMLA, 29 U.S.C. 2601 et seq and CFR 29 Part 825

4. An employer may consult documents that are considered "generally publicly available" such as newspapers, magazines, or by television/radio/other electronic media.

5. Information that is obtained as part of a genetic monitoring/surveillance program that monitors a potentially hazardous workplace environment.

6. Genetic information obtained by a law enforcement agency for the purposes of forensic analysis or for identification of human remains.

In these specific cases and exceptions, an employer would still have a legal obligation to protect any such family history and/or genetic testing information to the same extent that any employer must assure the confidentiality of an employee's other medical information such as an employee's personal medical history or hospital records.

Many employers, and some employees (either prospective or actual), will react negatively to GINA on grounds that " In the current economy, the last thing we need is more government regulation." To such statements I must reply that, given the argument holding discrimination to be ethically indefensible when based on sex or ethnicity, why should the existence a potential disease be less objectionable than actual racism or sexist discrimination?

As mentioned above, the Genetic Information Nondiscrimination Act (GINA) will take effect on 10 January 2011. For more information on GINA, as well as other issues impacting the legality of other employer - employee relations, see the Equal Employment Opportunity Commission's (EEOC) GINA homepage. See also the final text of the Genetic Information Nondiscrimination Act (GINA, 29 CFR Part 1632). A recap of the Health Insurance Portability and Accountability Act can be found on the Privacy Rights.org web site (WARNIG: the sponsorship of this site may be less than ideologically neutral),