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Genetic Information Added to “Do Not Ask” List In the U.S

Perhaps more than any other country, the U.S. has strict anti discrimination laws, both at the federal and state levels, and sometimes at the municipal level. Some of these laws are all-inclusive, for example covering the whole employment relationship, while others are directed solely at certain activities, such as housing. The basic precept of these laws is that the rights of an individual should not be randomly infringed by the government or by providers of public or employment services based upon discriminatory reasons. Because they are at least partly subjective, these laws are often difficult to enforce, and difficult to comply with, even with the best of motives.


While all members of the employee mobility industry are likely aware of the existing laws in the jurisdictions where they do business, a recent law and new regulations have expanded the list of protected categories in an area many may have not focused on: genetics.


Two years ago, the Congress passed the Genetic Information Nondiscrimination Act of 2008 (GINA), which, among other actions, prohibits discrimination in employment on the basis of genetic information. The law defines “genetic information” as information regarding an individual’s genetic tests, the genetic tests of a family member, or the existence of a disease or disorder in either.


Yesterday, the Equal Employment Opportunity Commission (EEOC) issued regulations implementing Title II of GINA, which is the portion of the law applicable to employers. As is often the case, these regulations contain restrictions which might not be evident from the text of the law itself.


These regulations only apply to employers with more than 15 employees. They become effective on January 10, 2011. However, it is important to note that laws in 34 states also prohibit employment discrimination on the basis of genetic information, in various degrees. Some of these laws may apply to employers with fewer than 15 employees. State laws can be stricter, but not more lenient, than GINA.


In general, the regulations prohibit employers from “requesting, requiring, or purchasing genetic information” regarding an employee.

A prohibited request would include conducting an Internet search on an individual in a way that is likely to result in the employer obtaining genetic information; “actively listening” to third party conversations or searching an individual’s personal effects for the purpose of obtaining genetic information; and making requests for information about an individual’s health status in a way that is likely to result in obtaining genetic information.

Because employers often obtain medical information which may include genetic information, the regulations provide an exception when the employer inadvertently requests this information from employees or their family members, usually as part of a lawful request for medical information. To fall within the exception, the employer must give notice to the employee that he or she should not provide genetic information. The regulations provide model language that will satisfy the notice requirement (found at the end of this blog).


Here are the highlights of the regulations with more specificity:

Genetic information, for the purposes of this law includes:

  • Information about an individual’s genetic tests;
  • Information about the genetic tests of a family member, or about “the manifestation of a disease or disorder in an individual’s family members (i.e. family medical history)”;
  • Requests for, and receipt of, genetic services by an individual or a family member; and
  • Genetic information about a fetus carried by an individual or family member, or about an embryo legally held by the individual or family member using assisted reproductive technology.

Besides the prohibition on collecting genetic information, the law also prohibits 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. In the words of the EEOC: “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.”


The law also makes it illegal to harass an employee based upon his or her genetic information, or to retaliate against an employee for participating in a discrimination hearing or procedure.


The most immediately relevant parts of the regulation, however, are the rules against the acquiring, and the confidentiality, of this information.


The general rule is that it will usually be unlawful for an employer to receive any genetic information. There are six exceptions to this prohibition, four of which are relevant to our industry:

  • Inadvertent acquisitions of genetic information, such as in situations where a manager overhears someone talking about a family member’s illness.
  • Genetic information (such as family medical history) may be obtained as part of health or genetic services, offered by the employer on a voluntary basis, if certain specific requirements are met, including the required employee warning language.
  • Family medical history may be acquired as part of the certification process for FMLA leave (or leave under similar state or local laws or pursuant to an employer policy), where an employee is asking for leave to care for a family member with a serious health condition.
  • Genetic information may be acquired through commercially and publicly available documents like newspapers, as long as the employer is not searching those sources with the intent of finding genetic information or accessing sources from which they are likely to acquire genetic information.

In addition not collecting genetic information, there are provisions for keeping it confidential once collected (through one of the exceptions).

It is also unlawful for to disclose genetic information about applicants, employees or members. Employers must keep genetic information confidential and in a separate medical file. There are some very limited exceptions to this non-disclosure rule, such as exceptions that provide for the disclosure of relevant genetic information to government officials investigating compliance with the law itself, and for disclosures made pursuant to a court order.


As might be expected, the implementation of this law will need to begin on the part of employers immediately; to ease the transition, the EEOC has produced a useful Question and Answer document which can be found at www.eeoc.gov.

The regulations themselves can be found at www.federalregister.gov.


The effect of these regulations on the employee mobility industry is not great, but it does add another paperwork requirement to the employment process, and requires sensitivity towards gathering information about employees. The first things any employer should do include: update forms used to obtain medical information to include the required employee notice; post required EEOC notices regarding the regulations, and update HR employees regarding the new requirements.


Postscript: The statutory language which must be found on documents collecting employee health matters is:

“The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employers and other entities covered by GINA Title II from requesting or requiring genetic information of an individual or family member of the individual, except as specifically allowed by this law.


To comply with this law, we are asking that you not provide any genetic information when responding to this request for medical information. `Genetic information' as defined by GINA, includes an individual's family medical history, the results of an individual's or family member's genetic tests, the fact that an individual or an individual's family member sought or received genetic services, and genetic information of a fetus carried by an individual or an individual's family member or an embryo lawfully held by an individual or family member receiving assistive reproductive services.


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