United States: Genetic Antidiscrimination Law Creates New Compliance Challenges For Employers

Last Updated: May 23 2008
Article by Philip L. Gordon and Jennifer L. Mora

Nearly seven years after declaring in a Presidential Radio Address that "[g]enetic discrimination is unfair to workers and their families" and that "[t]o deny employment or insurance to a healthy person based only on a predisposition violates our country's belief in equal treatment and individual merit," on May 21, 2008, President George W. Bush signed the Genetic Information Nondiscrimination Act of 2008 (GINA). Intended to encourage Americans to take advantage of advances in the genetic sciences without fear of adverse consequences, GINA provides broad protections in employment and health benefits against the improper collection, use or disclosure of employees' genetic information. Although GINA does not become effective until November 21, 2009, employers should immediately begin taking steps to ensure compliance with the Act.

Background

For nearly a decade, Congress has attempted to pass federal protections against genetic discrimination, especially in the context of health insurance and employment. Although Congress ultimately passed GINA overwhelmingly, there has been a heated debate over the need for federal legislation. Opponents noted that more than 40 states prohibit genetic discrimination in health insurance, and more than 30 states prohibit genetic discrimination in the workplace. Moreover, in 2000, then-President Bill Clinton signed an Executive Order that prohibits the federal government from requiring its employees to submit to any type of genetic test and from using an applicant's or employee's genetic information to make employment decisions.

Opponents also argued that existing federal statutes already prohibit the type of discrimination and use of information that GINA now expressly governs. For example, the Americans with Disabilities Act (ADA) comprehensively regulates an employer's right to collect, use, and disclose medical information during the hiring and accommodations process and protects disabled employees against employment discrimination. In addition, regulations promulgated under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) restrict an employer's ability to collect, use, and disclose genetic information when acquired through the administration of an employer-sponsored group health plan.

Congress, nonetheless, determined that GINA's passage was necessary to "establish[ ] a national and uniform basic standard ... 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."

Gina's Impact On Employers

GINA's Antidiscrimination Provisions

GINA expands Title VII of the Civil Rights Act of 1964 by imposing broad restrictions on the collection, use and disclosure of genetic information in the employment context. GINA applies to all employers who are subject to Title VII (i.e., those with 15 or more employees), as well as to employment agencies and labor organizations as those terms are defined in Title VII.

The starting point to understanding GINA's impact on employers is the Act's definition of genetic information. That definition encompasses not only the genetic tests of employees and their family members but also any "manifestation of a disease or disorder" in the employee's family members. The latter portion of the definition is intended to prevent an employer from inferring that an employee is predisposed to the same disease or disorder as a family member. Significantly, the Act defines family member expansively to include not only the employee's dependents but also relatives of the employee, or of the employee's dependents, from the first to the fourth degree. In other words, information about the manifested diseases or disorders of an employee's mother, grandmother, great grandmother, and great great grandmother would constitute "genetic information," for purposes of the Act.

GINA imposes three principal restrictions on employers with respect to genetic information. First, employers cannot discriminate in the terms or conditions of employment based upon genetic information. Second, employers are prohibited from retaliating against an employee who opposes genetic discrimination. Third, employers generally are barred from collecting genetic information about an employee, or an employee's family member, whether by request, mandatory disclosure, or purchase from a third party.

The restriction on collecting genetic information has several important exceptions. Most significantly, GINA allows employers to request or require the disclosure of a family member's genetic information, including manifested diseases or disorders, to comply with the Family and Medical Leave Act (FMLA) and state family and medical leave laws. In narrowly defined circumstances, employers may request or require the disclosure of genetic information to monitor the biological effects of toxic substances in the workplace. Employers do not violate GINA if they purchase commercially and publicly available documents, such as periodicals ( but excluding medical databases and court records), which contain genetic information about an employee or an employee's family member. Employers also do not violate GINA by "inadvertently" requesting or requiring family medical history, highlighting the need for employers to eliminate intentional requests for family medical histories.

Recognizing that employers may now, or in the future, offer "genetic services" as an employee benefit — for example, genetic counseling as part of a wellness program, GINA carves out an exception for requests for genetic information in connection with such services. To qualify, the employee must provide prior, voluntary, and written authorization for disclosure of genetic information to the service provider; only the employee and the licensed health care professional or board certified genetic counselor involved in providing the services may receive individually identifiable information related to the service; and no individually identifiable information related to the service may be disclosed to the employer. These provisions mean that, as a practical matter, an employer's involvement in an offering of genetic services should be limited to structuring and paying for the service.

With respect to enforcement, GINA incorporates Title VII's remedial scheme. Employees must exhaust administrative remedies before initiating a lawsuit, and damage awards are subject to the same restrictions as those applicable to Title VII. Also like Title VII, GINA does not preempt more stringent state laws. Unlike Title VII, GINA does not at this time permit claims based on a disparate impact theory. However, the EEOC is authorized to create a commission to review the developing science of genetics and to make recommendations as to whether disparate impact claims should be permitted.

GINA's Confidentiality Provisions

Employers are required to apply the same confidentiality protections for "genetic information" as are applicable to other types of medical information protected under the ADA. In other words, genetic information must be treated as confidential, maintained on separate forms and in separate medical files, and internal access must be strictly limited to those with a need to know.

Although GINA generally prohibits employers from disclosing genetic information to third parties, the statute provides a few exceptions. GINA allows disclosures (a) necessary for the employee to comply with federal or state medical leave laws, (b) to government agencies investigating compliance with GINA, and (c) in response to a court order provided that the employer notifies the employee of the disclosure if the court order was issued without the employee's knowledge. Employers also may disclose to federal, state, or local public health agencies that an employee's family member has manifested a contagious disease if the disease presents an imminent hazard of death or life-threatening illness and the employee is notified of the disclosure.

GINA's Application To Group Health Plans

GINA also amends ERISA to restrict the collection and use of genetic information in connection with group health benefits. Most fundamentally, the Act bars group health plans and health insurance issuers from adjusting contribution amounts or premiums for the group based on the genetic information of any plan participant, albeit premiums can be increased based upon the manifestation of a disease in a plan participant. GINA also generally prohibits plans from requesting or requiring individuals or their family members to undergo a genetic test and from requesting, requiring or purchasing genetic information for underwriting purposes or prior to an individual's enrollment. A plan or insurance issuer can use genetic test results for payment purposes. Finally, genetic information now expressly falls within HIPAA's definition of "protected health information" and must be treated as such when in the plan's or issuer's possession.

The Act authorizes the Labor Department to impose penalties of $100 per day of violation per affected individual, with a minimum penalty of $15,000 for material violations and of $2,500 for de minimis violations.

Practical Implications For Employers

GINA's practical implications are likely to be broad if GINA achieves the intended objective of encouraging more individuals to take genetic tests and to seek out genetic counseling. While these implications are difficult to foresee, the Act itself suggests the following actions that employers should consider taking by the effective date:

  • Add non-discrimination on the basis of genetic information to equal employment opportunity statements;

  • Discontinue requests to applicants and employees to provide a family medical history;

  • Avoid requesting information about the manifested disorders or diseases of an employee's family members for leave requests unrelated to the FMLA or state analogues;

  • Evaluate whether any changes are necessary in connection with the administration of health benefits;

  • Screen all employee medical information upon receipt to determine whether that information might fall within the broad definition of "genetic information" and, if so, provide required confidentiality protections; and

  • Implement policies and procedures to prevent the inadvertent disclosure of genetic information in response to a subpoena or civil discovery request unaccompanied by a court order compelling disclosure.

To date, only a very small number of cases alleging genetic discrimination have been reported. GINA's enactment should not result in a new flood of litigation if employers promptly address their compliance obligations under the Act.

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

To print this article, all you need is to be registered on Mondaq.com.

Click to Login as an existing user or Register so you can print this article.

Authors
Philip L. Gordon
 
In association with
Related Topics
 
Related Articles
 
Related Video
Up-coming Events Search
Tools
Print
Font Size:
Translation
Channels
Mondaq on Twitter
 
Register for Access and our Free Biweekly Alert for
This service is completely free. Access 250,000 archived articles from 100+ countries and get a personalised email twice a week covering developments (and yes, our lawyers like to think you’ve read our Disclaimer).
 
Email Address
Company Name
Password
Confirm Password
Position
Mondaq Topics -- Select your Interests
 Accounting
 Anti-trust
 Commercial
 Compliance
 Consumer
 Criminal
 Employment
 Energy
 Environment
 Family
 Finance
 Government
 Healthcare
 Immigration
 Insolvency
 Insurance
 International
 IP
 Law Performance
 Law Practice
 Litigation
 Media & IT
 Privacy
 Real Estate
 Strategy
 Tax
 Technology
 Transport
 Wealth Mgt
Regions
Africa
Asia
Asia Pacific
Australasia
Canada
Caribbean
Europe
European Union
Latin America
Middle East
U.K.
United States
Worldwide Updates
Registration (you must scroll down to set your data preferences)

Mondaq Ltd requires you to register and provide information that personally identifies you, including your content preferences, for three primary purposes (full details of Mondaq’s use of your personal data can be found in our Privacy and Cookies Notice):

  • To allow you to personalize the Mondaq websites you are visiting to show content ("Content") relevant to your interests.
  • To enable features such as password reminder, news alerts, email a colleague, and linking from Mondaq (and its affiliate sites) to your website.
  • To produce demographic feedback for our content providers ("Contributors") who contribute Content for free for your use.

Mondaq hopes that our registered users will support us in maintaining our free to view business model by consenting to our use of your personal data as described below.

Mondaq has a "free to view" business model. Our services are paid for by Contributors in exchange for Mondaq providing them with access to information about who accesses their content. Once personal data is transferred to our Contributors they become a data controller of this personal data. They use it to measure the response that their articles are receiving, as a form of market research. They may also use it to provide Mondaq users with information about their products and services.

Details of each Contributor to which your personal data will be transferred is clearly stated within the Content that you access. For full details of how this Contributor will use your personal data, you should review the Contributor’s own Privacy Notice.

Please indicate your preference below:

Yes, I am happy to support Mondaq in maintaining its free to view business model by agreeing to allow Mondaq to share my personal data with Contributors whose Content I access
No, I do not want Mondaq to share my personal data with Contributors

Also please let us know whether you are happy to receive communications promoting products and services offered by Mondaq:

Yes, I am happy to received promotional communications from Mondaq
No, please do not send me promotional communications from Mondaq
Terms & Conditions

Mondaq.com (the Website) is owned and managed by Mondaq Ltd (Mondaq). Mondaq grants you a non-exclusive, revocable licence to access the Website and associated services, such as the Mondaq News Alerts (Services), subject to and in consideration of your compliance with the following terms and conditions of use (Terms). Your use of the Website and/or Services constitutes your agreement to the Terms. Mondaq may terminate your use of the Website and Services if you are in breach of these Terms or if Mondaq decides to terminate the licence granted hereunder for any reason whatsoever.

Use of www.mondaq.com

To Use Mondaq.com you must be: eighteen (18) years old or over; legally capable of entering into binding contracts; and not in any way prohibited by the applicable law to enter into these Terms in the jurisdiction which you are currently located.

You may use the Website as an unregistered user, however, you are required to register as a user if you wish to read the full text of the Content or to receive the Services.

You may not modify, publish, transmit, transfer or sell, reproduce, create derivative works from, distribute, perform, link, display, or in any way exploit any of the Content, in whole or in part, except as expressly permitted in these Terms or with the prior written consent of Mondaq. You may not use electronic or other means to extract details or information from the Content. Nor shall you extract information about users or Contributors in order to offer them any services or products.

In your use of the Website and/or Services you shall: comply with all applicable laws, regulations, directives and legislations which apply to your Use of the Website and/or Services in whatever country you are physically located including without limitation any and all consumer law, export control laws and regulations; provide to us true, correct and accurate information and promptly inform us in the event that any information that you have provided to us changes or becomes inaccurate; notify Mondaq immediately of any circumstances where you have reason to believe that any Intellectual Property Rights or any other rights of any third party may have been infringed; co-operate with reasonable security or other checks or requests for information made by Mondaq from time to time; and at all times be fully liable for the breach of any of these Terms by a third party using your login details to access the Website and/or Services

however, you shall not: do anything likely to impair, interfere with or damage or cause harm or distress to any persons, or the network; do anything that will infringe any Intellectual Property Rights or other rights of Mondaq or any third party; or use the Website, Services and/or Content otherwise than in accordance with these Terms; use any trade marks or service marks of Mondaq or the Contributors, or do anything which may be seen to take unfair advantage of the reputation and goodwill of Mondaq or the Contributors, or the Website, Services and/or Content.

Mondaq reserves the right, in its sole discretion, to take any action that it deems necessary and appropriate in the event it considers that there is a breach or threatened breach of the Terms.

Mondaq’s Rights and Obligations

Unless otherwise expressly set out to the contrary, nothing in these Terms shall serve to transfer from Mondaq to you, any Intellectual Property Rights owned by and/or licensed to Mondaq and all rights, title and interest in and to such Intellectual Property Rights will remain exclusively with Mondaq and/or its licensors.

Mondaq shall use its reasonable endeavours to make the Website and Services available to you at all times, but we cannot guarantee an uninterrupted and fault free service.

Mondaq reserves the right to make changes to the services and/or the Website or part thereof, from time to time, and we may add, remove, modify and/or vary any elements of features and functionalities of the Website or the services.

Mondaq also reserves the right from time to time to monitor your Use of the Website and/or services.

Disclaimer

The Content is general information only. It is not intended to constitute legal advice or seek to be the complete and comprehensive statement of the law, nor is it intended to address your specific requirements or provide advice on which reliance should be placed. Mondaq and/or its Contributors and other suppliers make no representations about the suitability of the information contained in the Content for any purpose. All Content provided "as is" without warranty of any kind. Mondaq and/or its Contributors and other suppliers hereby exclude and disclaim all representations, warranties or guarantees with regard to the Content, including all implied warranties and conditions of merchantability, fitness for a particular purpose, title and non-infringement. To the maximum extent permitted by law, Mondaq expressly excludes all representations, warranties, obligations, and liabilities arising out of or in connection with all Content. In no event shall Mondaq and/or its respective suppliers be liable for any special, indirect or consequential damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action, arising out of or in connection with the use of the Content or performance of Mondaq’s Services.

General

Mondaq may alter or amend these Terms by amending them on the Website. By continuing to Use the Services and/or the Website after such amendment, you will be deemed to have accepted any amendment to these Terms.

These Terms shall be governed by and construed in accordance with the laws of England and Wales and you irrevocably submit to the exclusive jurisdiction of the courts of England and Wales to settle any dispute which may arise out of or in connection with these Terms. If you live outside the United Kingdom, English law shall apply only to the extent that English law shall not deprive you of any legal protection accorded in accordance with the law of the place where you are habitually resident ("Local Law"). In the event English law deprives you of any legal protection which is accorded to you under Local Law, then these terms shall be governed by Local Law and any dispute or claim arising out of or in connection with these Terms shall be subject to the non-exclusive jurisdiction of the courts where you are habitually resident.

You may print and keep a copy of these Terms, which form the entire agreement between you and Mondaq and supersede any other communications or advertising in respect of the Service and/or the Website.

No delay in exercising or non-exercise by you and/or Mondaq of any of its rights under or in connection with these Terms shall operate as a waiver or release of each of your or Mondaq’s right. Rather, any such waiver or release must be specifically granted in writing signed by the party granting it.

If any part of these Terms is held unenforceable, that part shall be enforced to the maximum extent permissible so as to give effect to the intent of the parties, and the Terms shall continue in full force and effect.

Mondaq shall not incur any liability to you on account of any loss or damage resulting from any delay or failure to perform all or any part of these Terms if such delay or failure is caused, in whole or in part, by events, occurrences, or causes beyond the control of Mondaq. Such events, occurrences or causes will include, without limitation, acts of God, strikes, lockouts, server and network failure, riots, acts of war, earthquakes, fire and explosions.

By clicking Register you state you have read and agree to our Terms and Conditions