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Prohibiting discrimination based on genetic information
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3/9/2010 by Mia Thibodeau |
In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA) prohibiting discrimination against individuals based upon the results of genetic tests that identify vulnerability to inherit diseases. GINA prohibits discrimination by health plan sponsors, their insurers and employers based on genetic information.
For example, health plan sponsors and insurers cannot request or require “genetic information” for use in decisions regarding coverage, rates or preexisting conditions. Prior to GINA, there were many reports of discrimination. The American Civil Liberties Union reported one woman from Kentucky was denied healthcare coverage for her children because they carry a gene for alpha-1 antitrypsin deficiency (a disorder that can cause lung and liver disease), even though her sons are only carriers and will never develop the condition.
Fearing such discrimination, individuals have declined potentially life-saving tests out of worry the results would be used to affect insurance coverage or cost for them or their families. The federal law now prohibits such discrimination. Available remedies under GINA include monetary penalties, corrective action and private litigation by individuals. Notably, GINA generally does not apply to employers with fewer than 15 employees.
The law defines “genetic information” as:
• An individual’s genetic test, including genetic tests that are part of a research study;
• Genetic tests of an individual’s family members, defined as dependents and up to and including fourth degree relatives;
• Genetic tests of any fetus of an individual or family member who is a pregnant woman;
• Genetic tests of any embryo legally held by an individual or family member using assisted reproductive technology;
• The manifestation of disease or disorder in family members (family history);
• any request for, or receipt of, genetic services or participation in clinical research that includes genetic services (genetic testing, counseling, or education) by an individual or family member;
• Genetic information does not include information on the sex or age of any individual.
Employer access
For employers, GINA prohibits the use of “genetic information” in making an employment decision. The Equal Employment Opportunity Commission has stated GINA affirms the principle central to all employment discrimination laws — all people have the right to be judged according to their ability to do a job, not on stereotypical assumptions. So GINA restricts the acquisition of genetic information by employers and others.
There are six narrow exceptions in which an employer may obtain genetic information from an employee:
• 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.
• 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. (See “Example ” No. 4, next page)
• Genetic information may be acquired as part of the certification process for the Family Medical Leave Act (or leave under similar state or local laws), when an employee is asking for leave to care for a family member with a serious health condition.
• Acquisition through commercially and publicly available documents like newspapers is permitted, as long as the employer is not searching those sources with the intent of finding genetic information.
• Acquisition through a genetic monitoring program that monitors the biological effects of toxic substances in the workplace is permitted when the monitoring is required by law, or under carefully defined conditions, when the program is voluntary.
• Acquisition 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 only may be used for analysis of DNA markers for quality control to detect sample contamination.
While an employer may be able to obtain genetic information under one of the above exceptions, it is unlawful to disclose genetic information about applicants or employees. Employers should obtain advice of counsel before requesting genetic information. Additionally, GINA requires employers to keep genetic information confidential and in a separate medical file.
GINA also prohibits harassment of a person because of his or her genetic information. Harassment may include making offensive or derogatory remarks about an applicant or employee’s genetic information. Harassment is illegal when it is so severe or pervasive that it creates a hostile or offensive work environment, or results in an adverse employment decision (such as the victim being fired or demoted). A harasser may be the victim’s supervisor, a coworker or someone who is not an employee, such as a client or customer.
Finally, the law precludes an employer from “retaliating” against an employee who has alleged discrimination based on genetic information. Under GINA, it is illegal to fire, demote or harass an employee for filing a charge of discrimination or participating in a discrimination proceeding, such as discrimination investigation or lawsuit.
Health plan insurers
For health plan sponsors and their insurers, GINA establishes three general prohibitions, subject to the rules of construction or exceptions included in the law.
First, GINA precludes the collection of genetic information, such as family medical history, if that information will be used for underwriting purposes. “Underwriting purposes” include changing deductibles or other cost-sharing mechanisms, or providing discounts, rebates, payments in kind, or other premium differential mechanisms in return for activities such as completing a health risk assessment or participating in a wellness program. Therefore, health plan sponsors and their insurers may not request family medical history before an individual is enrolled (or reenrolled) in a plan, or if a reward will be given for providing such information (or penalty assessed for not providing it).
The regulations clarify “the determination of medical appropriateness” is not within the meaning of “underwriting purposes.” Therefore, if an individual seeks a benefit under a plan and coverage is based on whether the benefit is “medically appropriate,” the plan can collect the relevant genetic information and condition the benefit on that information.
Second, group health plan sponsors and their insurers are prohibited from adjusting premiums or contributions for the group on the basis of the genetic information of individuals within the group. GINA permits insurers to increase premiums based on claims data, but prohibits the use of that information as genetic information for other family members.
Third, health plan sponsors and their insurers can’t require an individual or family member to undergo a genetic test. Plan sponsors and insurers may request a genetic test only in connection with research programs that meet certain requirements. For instance, risks associated with the research must be minimized and reasonable in relation to anticipated benefits, and adequate provisions in place to protect the privacy of subjects and maintain data confidentiality.
Examples
Interim final regulations provide examples that help clarify the GINA rules for health plan sponsors and their insurers. Among them:
1. A group health plan provides a premium reduction to enrollees who complete a Health Risk Assessment (HRA) after enrollment. The HRA includes questions about family medical history. Since completing the HRA results in a premium reduction, the request is for underwriting purposes and violates the prohibition on collecting genetic information under GINA.
2. A group health plan requests enrollees complete an HRA before enrollment and includes questions on family medical history. There is no penalty or reward for completing the HRA. Since the HRA requests genetic information prior to enrollment, and is not an incidental request, this request violates GINA.
3. A group health plan requests that enrollees complete an HRA after enrollment and does not provide a premium reduction or reward. The HRA includes questions about family medial history. Based on their answers, enrollees may become eligible for additional benefits under the plan by enrolling in a disease management program. Since completing the HRA results in additional benefits, the request is for underwriting purposes and violates the prohibition on collecting genetic information under GINA.
4. A group health plan offers a diabetes management program that provides enhanced benefits related only to diabetes for individuals who qualify for the program. The plan sends out a notice to all participants describing the program and asks individuals interested in enrolling to demonstrate they have diabetes or are at risk for developing the disease. Individuals who do not currently have diabetes may submit genetic information to demonstrate that they are at risk. Since the plan is only requesting genetic information to determine whether the disease management program is medically appropriate for the individual, and only requests the minimum necessary for that purpose, the collection is not for underwriting purposes and does not violate GINA.
5. A group health plan requests enrollees complete two distinct HRAs after enrollment. The first does not include a request for any genetic information. The plan offers a reward for completing the first HRA. The second asks about family medial history and genetic tests the individual has undergone. The plan offers no reward for completing the second HRA, and makes it clear participation is wholly voluntary and does not affect the reward for completing the first HRA. Since the first HRA does not request genetic information and the second HRA does not provide a reward or incentive and is completed after enrollment, the combination of the two HRAs does not violate GINA.
GINA will have an impact on employers, health plan sponsors and their insurers due to cost associated with ensuring compliance and uncertainty over the impact on healthcare expenditures. However, GINA will enable Americans to use genetic tests to make informed healthcare decisions without fear of discrimination by employers or insurers.
Mia E. Thibodeau is an attorney at Fryberger, Buchanan, Smith & Frederick, P.A. She practices in the area of family law, elder law, estate planning and wills,guardianships, trusts & probate and nonprofit organizations. You can reach her at the firm’s Duluth office, 218-722-0861.
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