Your Genetic Information and Your Health Plan – Know The Protections Against Discrimination
GINA expands these protections in a number of ways:
The Department of Labor, the Department of the Treasury, and the Department of Health and Human Services are responsible for the administration of the provisions of GINA prohibiting discrimination by group health plans and health insurance issuers based on genetic information. The GINA protections for the individual insurance market and privacy and confidentiality under the Social Security Act are within the jurisdiction of the Department of Health and Human Services. The provisions of GINA addressing discrimination in employment based on genetic information is under the jurisdiction of the Equal Employment Opportunity Commission.
This publication addresses the GINA provisions applicable to employment-based group health plans.
What is Genetic Information?
Genetic information includes:
For pregnant women (or a family member of a pregnant woman), this includes genetic information about the fetus or embryo (when assisted reproductive technology is used).
Genetic information does not include information about the sex or age of any individual.
What is a Manifested Disease?
A manifested disease is a disease, disorder, or pathological condition for which an individual has been or could reasonably be diagnosed by a health care professional (with appropriate training and expertise in the field of medicine involved).
A disease is not manifested if a diagnosis is based principally on genetic information. For example, an individual whose genetic tests indicate a genetic variant associated with colorectal cancer and another that indicates an increased risk of developing cancer, but who has no signs or symptoms of disease and has not and could not reasonably be diagnosed with a disease does not have a manifested disease.
What are Genetic Services and Tests?
Genetic services mean genetic tests, genetic counseling, or genetic education. Genetic test means an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, if the analysis detects genotypes, mutations, or chromosomal changes. A genetic test does not include an analysis of proteins or metabolites directly related to a manifested disease, disorder, or pathological condition.
Some examples of genetic tests are tests to determine whether an individual has a BRCA1, BRCA2, or colorectal cancer genetic variant. In contrast, an HIV test, complete blood count, cholesterol test, liver function test, or test for the presence of alcohol or drugs is not a genetic test.
Now that you know what genetic information is, read on to know your rights under GINA
Health Plan Premiums
GINA prohibits a group health plan from adjusting group premium or contribution amounts for a group of similarly situated individuals based on the genetic information of members of the group. This is a change from HIPAA’s prior nondiscrimination requirements, which allowed plans to adjust premiums or contributions for the group health plan or group of similarly situated individuals (but not for specific individuals within the group) based on genetic information. Therefore, even if a plan obtained individual genetic information about group members before GINA’s effective date (January 1, 2010 for calendar year plans), it cannot be used to adjust the group premium.
Plans can charge a higher group premium or contribution based on the manifested disease or disorder of an individual enrolled in the plan. This is because information about an individual’s manifested disease or disorder is not genetic information with respect to that individual. However, a plan cannot use the manifestation of a disease or disorder in one individual as genetic information about other group members to further increase the group premium.
A plan can take into account the costs associated with providing benefits for covered genetic tests or genetic services in determining overall premium or contribution amounts.
Note that under HIPAA, a plan cannot charge an individual more for coverage than other similarly situated individuals in the group based on any health factor, including a manifested disease or disorder.
Group health plans and health insurers generally cannot request or require an individual or family member to undergo a genetic test. However, there are three exceptions to this general rule:
Provision of Health Care Services
A health care professional includes but is not limited to a physician, nurse, physician’s assistant, or technicians that provide health care services to patients.
Payment of Claims
For example, if a plan normally covers mammograms starting at age 40, but covers them at age 30 for individuals with a high risk of breast cancer, the plan generally may require that an individual under 40 submit genetic test results or family medical history as evidence of a high risk of breast cancer in order to have the claim for the mammogram paid. Because the medical appropriateness of a mammogram depends on the patient’s genetic makeup, the minimum amount of information necessary for determining payment of the claim may include the results of a genetic test or the individual’s family medical history.
Collection of Genetic Information
Under GINA, collecting genetic information includes requesting, requiring or purchasing the information.
Plans cannot collect your genetic information, including your family medical history, either before you enroll or in connection with your enrollment in the group health plan.
Plans also cannot collect your genetic information as part of their underwriting procedures. Under GINA, the definition of underwriting purposes is broad. This means that no genetic information can be collected by the plan for purposes of:
GINA generally prohibits plans from offering rewards in return for the provision of genetic information, including family medical history information collected as part of a Health Risk Assessment (HRA).
However, genetic information that is obtained incidental to the collection of other information is permitted if:
Health Risk Assessments
A plan may use an HRA that requests family medical history if it is requested to be completed after and unrelated to enrollment and if there is no premium reduction or any other reward for completing the HRA (it is not used for underwriting purposes).
If an HRA does not request family medical history or other genetic information, such as information about any genetic tests the individual has undergone, a plan may offer a premium discount or other reward for completing the HRA. The HRA must explicitly state that genetic information should not be provided. This ensures that any genetic information collected is within the incidental collection exception. However, the plan may not use any genetic information it obtains incidentally for underwriting purposes.
Under GINA group health plans may also reward:
If you have questions regarding your GINA rights under an employer-sponsored group health plan, call the Department of Labor's Employee Benefits Security Administration toll free at 1-866-444-3272 or contact EBSA electronically. You can also visit the EBSA Web site for more information including a list of all of the publications available from EBSA. For more information on HIPAA, you can request a copy of Your Health Plan and HIPAA…Making the Law Work for You.
The individual market provisions under GINA are administered by the Department of Health and Human Services’ Centers for Medicare & Medicaid Services.
The privacy and confidentiality provisions are administered by the Department of Health and Human Services’ Office for Civil Rights.
The employment-related provisions are administered by the Equal Employment Opportunity Commission (EEOC).
Note: The Affordable Care Act provides additional protections for your benefits under your health plan. This publication does not reflect the passage of the Affordable Care Act. For further information, visit the EBSA Web site. Also visit the Department of Health and Human Services Web site.
This publication has been developed by the U.S. Department of Labor, Employee Benefits Security Administration, and is available on the Web at www.dol.gov/ebsa. For a complete list of the agency's publications, call our toll free number at 1-866-444-3272. This material will be made available in alternate format upon request, Voice phone: 202-693-8664, TTY: 202-501-3911.
This booklet constitutes a small entity compliance guide for purposes of the Small Business Regulatory Enforcement Act of 1996.