Genetic Information Nondiscrimination Act of 2008 (GINA)

Genetic Information Nondiscrimination Act of 2008 (GINA)

GINA is short for Genetic Information Nondiscrimination Act of 2008 and is a federal law prohibiting Genetic Information Discrimination.  Title I of GINA prohibits discrimination based on genetic information in health coverage.  Title II of GINA prohibits discrimination based on genetic information in employment.  Genetic Information Nondiscrimination Act of 2008 (GINA)

What is Considered Genetic Information? 

“Genetic information means information about an individual’s genetic tests, the genetic tests of family members of the individual, the manifestation of a disease or disorder in family members of the individual or any request for or receipt of genetic services, or participation in clinical research that includes genetic services by the individual or a family member of the individual. The term genetic information includes, with respect to a pregnant woman (or a family member of a pregnant woman) genetic information about the fetus and with respect to an individual using assisted reproductive technology, genetic information about the embryo. Genetic information does not include information about the sex or age of any individual.” Sourced from the US DOL

Title I of GINA

Who is Covered by Title I of GINA?

Health Insurers and Group Health Plans – (Employers and other entities covered by Title II are liable for actions that violate Title II; health plans and health insurance issuers are liable for actions that violate Title I.  The same actor cannot be held liable under both, but the same act may lead to liability for both employer and health plan)

Under Title I of GINA, group health plans and health insurance issuers are prohibited from discriminating against covered individuals based on genetic information.  The Department of Labor states that while “HIPAA prevents a plan or issuer from imposing a preexisting condition exclusion based solely on genetic information, and prohibits discrimination in individual eligibility, benefits, or premiums based on any health factor (including genetic information). GINA provides additional underwriting protections; prohibits requesting or requiring genetic testing; and restricts the collection of genetic information.”

Specifically, Health Insurers and Group Plans may not:

1-Use genetic information to make eligibility, coverage, underwriting, or premium-setting decisions.

2-Request or require individuals or their family members to undergo genetic testing or to provide genetic information.

3-Use genetic information obtained intentionally or unintentionally in decisions about enrollment or coverage.

4-Use of genetic information as a preexisting condition is prohibited in both the Medicare supplemental policy and individual health insurance markets.


However, there are two exceptions to insurers obtaining Genetic Information:

1-Known Genetic Risk

2-For research purposes, insures may request in writing that an individual undergo genetic testing.  This is voluntary and not required.  Refusal to participant will have NO negative effect on their premium or status.  The collected genetic information may be used for research purposes only, and not for underwriting decisions.

The Title I regulations attempt to clarify the intent of the law by modifying the Privacy Rule to state that genetic information is health information and to prohibit the use and disclosure of genetic information by covered health plans for underwriting purposes, which include:

» Eligibility determinations

» Premium computations

» Applications of any pre-existing condition exclusion

» And any other activities related to the creation, renewal, or replacement of a contract of health insurance or health benefits.

Who Administers and Enforces Title I of GINA?

» DOL: The Department of Labor has jurisdiction with respect to employment-based group health plans.

» HHS: Health and Human Services (HHS) in conjunction with the States administers these provisions with respect to health insurance issuers.

» Treasury & IRS: The Treasury and IRS administer these provisions with respect to EMPLOYERS.

» HHS: Title I of GINA also includes individual insurance market provisions under the Public Health Service Act and privacy and confidentiality provisions under the Social Security Act, which are both within the jurisdiction of HHS.



Under Title II of GINA, it is illegal to discriminate against employees or applicants because of genetic information regarding hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term or condition of employment.  Title II was added in 2009.  Title II of GINA:

» Prohibits the use of genetic information in making employment decisions

» Restricts employers and other entities covered by Title II from requesting, requiring or purchasing genetic information

» Strictly limits the disclosure of genetic information.

Who are “covered entities” of Title II of GINA?

» Private Employers with 15 or more employees

» State and local government employers with 15 or more employees

» Employment Agencies

» Labor Organizations

» Joint Labor-Management Training & Apprenticeship programs

» It also covers Congress and federal executive branch agencies. The NPRM and this document use the term “covered entity” to refer collectively to all entities subject to Title II of GINA.

» Note: Employers and other entities covered by Title II are liable for actions that violate Title II; health plans and health insurance issuers are liable for actions that violate Title I.  The same actor cannot be held liable under both, but the same act may lead to liability for both employer and health plan


 Harassment Because of Genetic Information

Under GINA it is illegal to harass someone because of their genetic information.  Derogatory statements and comments are unnecessary and offensive.  They can lead an employee or applicant to file harassment under GINA.   The EEOC states that, “Although the law doesn’t prohibit simple teasing, offhand comments, or isolated incidents that are not very serious, harassment is illegal when it is so severe or pervasive that it creates a hostile or offensive work environment or when it results in an adverse employment decision.  The harasser can be the victim’s supervisor, a supervisor in another area of the workplace, a co-worker, or someone who is not an employee, such as a client or customer.”


Under GINA, it is illegal to fire, demote, harass, or otherwise “retaliate” against an applicant or employee for filing a charge of discrimination, participating in a discrimination proceeding (such as a discrimination investigation or lawsuit), or otherwise opposing discrimination.

Exceptions to Acquire Genetic Information:

According to the EEOC: “Though it is not lawful for a covered entity (employers, ect…listed above) to acquire genetic information, there are six exceptions:

1-Inadvertent acquisitions of genetic information do not violate GINA, such as in situations where a manager or supervisor overhears someone talking about a family member’s illness.

2-Genetic information (such as family medical history) may be obtained as part of health or genetic services, including wellness programs, offered by the employer on a voluntary basis, if certain specific requirements are met.

3-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

4-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 (such as websites and on-line discussion groups that focus on issues such as genetic testing of individuals and genetic discrimination).

5-Genetic information may be acquired through a genetic monitoring program that monitors the biological effects of toxic substances in the workplace where the monitoring is required by law or, under carefully defined conditions, where the program is voluntary.

6-Aquisition of genetic information of employees by employers who engage in DNA testing for law enforcement purposes as a forensic lab or for purposes of human remains identification is permitted, but the genetic information may only be used for analysis of DNA markers for quality control to detect sample contamination.”


It is illegal for companies to share or disclose genetic information about applicants, employees or members. Genetic information must be kept in a separate medical file. Thee EEOC states, “There are six limited circumstances under which an employer may disclose genetic information:

1-To the employee or family member about whom the information pertains upon receipt of the employee’s or family member’s written request;

2-To an occupational or other health researcher conducting research in compliance with certain federal regulations;

3-In response to a court order, except that the covered entity may disclose only the genetic information expressly authorized by the order;

4-To government officials investigating compliance with Title II of GINA, if the information is relevant to the investigation;

5-In accordance with the certification process for FMLA leave or state family and medical leave laws; or

6-To a public health agency only with regard to information about the manifestation of a disease or disorder that concerns a contagious disease that presents an imminent hazard of death or life-threatening illness.”

Who Administers and Enforces Title II of GINA?

The EEOC or Equal Employment Opportunity Commission, addresses discrimination in employment based on genetic information.

Potential Penalties include: Front and/or back pay; Reinstatement; Compensatory damages; Punitive damages; and Attorneys’ fees.  (Punitive damages are not available against federal, state, or local government employers.)  

UPDATE ON 5/17/2016: WELLNESS Programs & GINA

Information obtained from the EEOC:  The final rule says employers may provide limited financial and other inducements (also called incentives) in exchange for an employee’s spouse providing information about his or her current or past health status as part of a wellness program, whether or not the program is part of a group health plan.  This kind of information usually is provided as part of a HRA, which may include a questionnaire or medical examination, such as a blood pressure test or blood test to detect high cholesterol or high glucose levels.  The program must be reasonably designed to promote health or prevent disease and must not be over burdensome to the employee. (The employees’ own rights are primarily governed by the ADA.)

» The provisions of the final rule related to wellness program inducements will apply only prospectively to employer-sponsored wellness programs as of the first day of the first plan year that begins on or after January 1, 2017, for the health plan used to determine the level of inducement permitted under this rule.

» The EEOC defines “Wellness Program” as health promotion and disease prevention programs and activities offered to employees. Some wellness programs are part of an employer-sponsored group health plan, and other wellness programs are not tied to group health plans. Many of these programs ask employees to answer questions on a health risk assessment (HRA) and/or undergo biometric screenings for risk factors (such as high blood pressure or cholesterol). Other wellness programs provide educational health-related information or programs that may include nutrition classes, weight loss and smoking cessation programs, onsite exercise facilities, and/or coaching to help employees meet health goals. Some employers now extend wellness programs to employees’ family members, particularly those who are enrolled in employer group health plans.

Inducements are Permitted

“Inducements” include not only cash payments, but also “in-kind” items, “such as time-off awards, prizes, or other items of value, in the form of either rewards or penalties.”

This rule applies only where a portion of the inducement offered within a wellness program is for an employee’s spouse to answer questions about his or her current or past health status or to take a medical examination. GINA does not apply to inducements made available in exchange for an employee’s spouse engaging in certain activities that do not require obtaining information about current or past health status, such as attending a weight loss or nutrition program or exercising a certain amount each week. However, inducement limits and a requirement to provide a reasonable alternative standard may apply to some of these programs under HIPAA, as amended by the Affordable Care Act.

» If a wellness program is open only to employees and family members in a particular group health plan, then the maximum inducement for the employee’s spouse to provide information about current or past health status is 30 percent of the total cost of self-only coverage under the group health plan in which the employee and family members are enrolled. NOTE: The employee’s share of the inducement cannot exceed 30 percent of the employer’s cost of providing individual coverage. And then the spouse’s share can’t exceed the difference between the employee’s share of the inducement and the total allowable inducement for spousal/family coverage.

» The final rule does not allow employers to offer inducements for children due to the increase of possible discrimination based on the children’s genetic information.  The final rule reiterates that employers may offer children the opportunity to participate in wellness programs, as long as they are not offered inducements in exchange for information about their current health status or about their genetic information. It also clarifies that the prohibition on offering inducements in exchange for information about the current or past health status of children applies to adult and minor children.

» The final rule also increases confidentiality to include — in addition to sale — exchange, transfer, or other distribution. Some public comments indicated that genetic information may be transferred from one entity to another by means other than a sale.

» The final preamble also references some best practices for ensuring confidentiality including establishing clear policies, training staff who handle confidential information, encryption of information stored electronically, and prompt reporting of data breaches. The same kinds of best practices are referenced in the Appendix (Interpretive Guidance) to the ADA final rule.

» The requirement that genetic information gathered as part of a wellness program be disclosed to employers only in aggregate terms has not been changed by the final rule, and that limitation on disclosure continues to apply. Genetic Information Nondiscrimination Act of 2008 (GINA

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