Living With HD
- Stages Of HD
- Living At Risk
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- Treatment Guidelines for Huntington's disease
- Long Term Care
- Physician's Guide to the Management of HD - 3rd Edition
- HDSA Concerns with AAN Chorea Treatment Recommendations
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- HDSA Forum
The Genetic Information Nondiscrimation Act (GINA)
The Genetic Information Non-Discrimination Act (GINA) created new protections against the misuse of genetic information by health insurance companies and employers. GINA made it illegal for health insurance companies to deny coverage or to charge a higher rate or premium to an otherwise healthy individual found to have a genetic predisposition to a disease or disorder. GINA also made it illegal for employers to use an employee's genetic information when making employment decisions such as hiring, firing, promotions, or any other terms of employment.
GINA offers significant protection, but those who are at risk should still carefully consider the use of genetic services. HDSA strongly recommends individuals considering genetic tests to speak with a trained genetic counselor both before and after testing. Taking a genetic test for HD is a very personal decision with outcomes that should be given much thought before the test.
- cannot request or require an individual or family member to undergo a genetic test;
- cannot request, require or purchase genetic information before or after enrollment;
- may obtain the results of a genetic test only for payment purposes and can only; request the minimum amount of information regarding the test
- may obtain genetic information incidentally without penalty;
- cannot use genetic information to determine eligibility, premiums, or contribution amounts;
- cannot exercise any pre-existing condition clause unless disease is manifested;
- cannot use genetic information to determine rules for the creation, renewal or replacement of a health insurance contract;
- Group health plans and health insurance companies offering group (not individual) health insurance may increase the contribution from an employer when that individual becomes symptomatic;
- Group health plans and health insurance companies offering group health insurance or any Medicare issuer cannot make rules for continued eligibility or change premiums or contribution amounts for individuals or family members who become symptomatic;
- Health insurance companies offering individual plans can make rules for eligibility, or continued eligibility, or premium/contribution amounts when an individual or family member covered under individual's policy becomes symptomatic;
- cannot refuse to hire, discharge, or otherwise discriminate against any employee with respect to compensation, terms, conditions or privileges
- cannot limit, segregate or classify employees or in any way deprive any employee of employment opportunities
- cannot request, require or purchase genetic information with respect to an employee or any family member, except in very specific cases
- cannot cause or attempt to cause (in the case of employment agencies and labor organizations) an employer to discriminate against an employee
- cannot discriminate with respect to an individuals admission to or employment in any apprenticeship, training or retraining program, and cannot segregate or classify participants in such programs
- cannot be penalized for possessing genetic information if given voluntarily by the employee or incidentally received, but must maintain such information as a confidential medical record. Employer cannot disclose the genetic information of employees except in very specific cases.
Who is Considered Family
- Any dependent (except in Medicare) of the covered individual
- Any first, second, third or fourth degree relative of covered individual
- The fetus of any individual or family member who is a pregnant woman
- The embryo legally held by individual or family member utilizing assisted reproduction
What is Considered Genetic Information
- Any information about an individual's genetic tests (that test genotypes, mutations or chromosomal changes), the genetic tests of family members, and manifestation of disease or disorder in family members of an individual
- Any request for, or receipt of, genetic services or participation in clinical research that includes genetic services (genetic tests, counseling or education).
Genetic information is now treated as health information under HIPAA (Health Insurance Portability and Accountability Act of 1996), thus making genetic information subject to HIPAA's privacy regulations.
Will my genetic information be protected if I decide to participate in a clinical trial?
A health insurance company can never request or require an individual to provide genetic information other than for payment purposes. However, an insurer may request, but not require, a genetic test following a group member's participation in federally approved and regulated research. Any such request must be made in writing and state clearly that compliance is voluntary and that non-compliance will have no effect on enrollment status, premiums or contribution amounts.
What can change when a gene positive individual becomes symptomatic?
Depending on your kind of insurance plan, your health insurance company may be able to reevaluate the terms of coverage when the disease becomes manifest. If you are under a group health plan then the insurance company cannot change terms due to manifestation of the disease. However, if you are under an individual health plan (meaning you pay your entire contribution and no other source, such as an employer, pays a part of the insurance cost) then an insurance company may still make changes to the terms.
Do the same protections apply to other kinds of insurance under GINA?
Unfortunately, GINA only provides for protection under health insurance and Medicare. Other kinds of insurance such as long term care insurance, disability insurance and life insurance may still request genetic information to determine eligibility and other coverage terms.
My policy coverage start date is before May 21. When will GINA take effect?
If you are insured under an individual insurance plan, meaning you cover the cost of your insurance completely, then all amendments of GINA are in effect. However, if you are insured under a group health plan or by a health insurance company offering a group health insurance then, because of the way the law is written, GINA will take effect the date the plan or policy year starts after May 21, 2009. For example, if your plan start date is in January, GINA will become effective until the January 2010. The latest GINA can possibly take effect is May 20, 2010.
Where GINA Applies
Group Health Insurance
Individual Health Insurance
Where GINA DOES NOT Apply
Long Term Care Insurance
Insurance for Military personnel/V.A. beneficiaries