GINA Notice
Genetic Information Nondiscrimination Act of 2008
1. What is GINA?
The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects Americans from discrimination based on their genetic information. GINA was signed into law on May 21, 2008, and its protections are divided into two titles: Title I addresses genetic discrimination in health insurance, and Title II addresses genetic discrimination in employment.
As a genomic health platform, Atlagene wants you to understand your rights under GINA and related laws before and after you submit your genetic data for analysis. This notice is provided for educational purposes and summarizes the key protections available to you.
2. Title I Protections — Health Insurance
GINA Title I prohibits health insurers from:
- Using genetic information to make eligibility, coverage, underwriting, or premium-setting decisions. A health insurer cannot charge you more, deny you coverage, or impose pre-existing condition exclusions based on your genetic test results.
- Requesting or requiring that you or your family members undergo genetic testing as a condition of enrollment or coverage.
- Requesting, requiring, or purchasing genetic information about you for underwriting purposes. This applies even if the insurer obtains the information incidentally (e.g., from medical records).
- Using genetic information about a fetus, embryo, or newborn as a basis for coverage decisions about the mother.
Title I applies to group health plans, health insurance issuers in the group and individual markets, and issuers of Medicare supplemental (Medigap) policies. It is enforced by the U.S. Department of Health and Human Services (HHS), the Department of Labor, and the Department of the Treasury.
Important distinction: GINA protects against the use of genetic information (predisposition and risk). It does not prohibit insurers from using information about a condition that has already been diagnosed through clinical means, even if the condition has a genetic component. For example, an insurer cannot use your BRCA1 test result to deny coverage, but once breast cancer is clinically diagnosed, standard insurance rules for pre-existing conditions apply (subject to ACA protections).
3. Title II Protections — Employment
GINA Title II prohibits employers from:
- Using genetic information in any employment decision, including hiring, firing, promotion, demotion, compensation, job assignments, layoffs, training, or any other term or condition of employment.
- Requesting, requiring, or purchasing genetic information about an employee or job applicant, with very limited exceptions (e.g., inadvertent acquisition, publicly available information, FMLA certification, employer-sponsored wellness programs with voluntary genetic testing).
- Requesting, requiring, or purchasing genetic information about an employee's family members.
- Retaliating against an employee for filing a charge of discrimination, participating in a proceeding, or opposing unlawful genetic discrimination.
- Disclosing genetic information about employees or applicants, except in limited circumstances (e.g., to the employee upon request, for research with safeguards, as required by court order).
Title II applies to private employers with 15 or more employees, employment agencies, labor organizations, and joint labor-management training programs. It is enforced by the U.S. Equal Employment Opportunity Commission (EEOC). Under GINA, "genetic information" includes your genetic test results, the genetic test results of your family members, family medical history (going back four generations), requests for or receipt of genetic services by you or your family members, and genetic information about a fetus or embryo.
4. What GINA Does NOT Cover
Important: GINA has significant gaps in coverage. You should be aware of the following limitations before sharing your genetic results:
- Life insurance: GINA does not prohibit life insurance companies from requesting genetic test results, using genetic information in underwriting decisions, or denying coverage based on genetic predisposition. Some states have enacted protections (see below).
- Disability insurance: GINA does not apply to disability insurance (short-term or long-term). Disability insurers may request and use genetic information in coverage decisions.
- Long-term care insurance: GINA does not apply to long-term care insurance policies. Long-term care insurers may request and use genetic information.
- Employers with fewer than 15 employees: GINA Title II does not apply to employers with fewer than 15 employees. These employees may have state-level protections depending on their jurisdiction.
- U.S. military: Members of the U.S. military are covered under different frameworks. GINA's employment protections may not apply in the same way. Military-specific genetic privacy policies apply.
- Federal employees: While federal employees have similar protections under Executive Order 13145 and the Rehabilitation Act, the enforcement mechanisms differ from GINA Title II.
- Indian Tribal employers: Federally recognized Indian Tribes are generally exempt from Title VII of the Civil Rights Act and may also be exempt from certain GINA provisions.
5. State-Specific Protections
Several states have enacted genetic privacy laws that extend beyond federal GINA protections. The following table highlights notable state laws (this is not exhaustive):
| State | Law | Key Protections |
|---|---|---|
| California | CalGINA (SB 559); Cal. Ins. Code 10123.35 | Extends GINA-like protections to housing, mortgage lending, education, and public accommodations. Cal. Insurance Code 10123.35 prohibits life and disability insurers from using genetic information — stronger than federal GINA. Covers employers of 5+ employees (vs. federal 15+). |
| Illinois | Genetic Information Privacy Act (410 ILCS 513) | Requires separate, written informed consent before collecting, storing, or disclosing genetic information. Provides a private right of action with statutory damages of $1,000–$5,000 per violation plus attorney's fees. |
| New York | Civil Rights Law 79-l; Insurance Law 2612 | Requires written informed consent prior to performing any genetic test. Prohibits life, disability, and long-term care insurers from requesting or using genetic test results for underwriting purposes. |
| Florida | FL Stat. 760.40 | Genetic test results are the exclusive property of the person tested. Results may not be disclosed without the person's written consent. Violations are a first-degree misdemeanor. |
| Vermont | 18 V.S.A. 9331–9335 | Broad protections covering insurance (including life and disability), employment, and housing. Requires informed consent for genetic testing. One of the most comprehensive state genetic privacy laws. |
We encourage you to research the specific laws in your state. State attorney general offices can provide information about genetic privacy protections in your jurisdiction.
6. How Atlagene Protects You
Atlagene takes the following measures to protect your genetic privacy, many of which go beyond what the law requires:
- No employer or insurer sharing: We will never share your genetic data with employers, health insurers, life insurers, disability insurers, long-term care insurers, or any entity that could use it for discriminatory purposes. This commitment applies regardless of whether the specific insurance type is covered by GINA.
- Encrypted, isolated storage: Your genetic data is encrypted at rest using AES-256 encryption and stored in a database that is physically isolated from your personally identifiable information (name, email, address). Even in the event of a breach of one database, the data cannot be linked to your identity without access to both systems.
- No sale or licensing: We do not sell, license, or lease individual genetic data to any third party for any purpose, including research, pharmaceutical development, or marketing.
- User control: You maintain full control over who can access your results. You can download your data at any time and delete all your genetic data permanently through your account settings.
- Minimum necessary sharing: When sharing data with physician partners for required clinical review, we share only the specific variants and results requiring review — not your complete genome data.
- De-identification for research: Any research use of genetic data requires separate consent and uses data stripped of all identifiers per the HIPAA Safe Harbor method.
- Audit trail: All access to your genetic data is logged and auditable. You may request an accounting of who has accessed your data by contacting us at privacy@atlagene.com.
7. Filing a Complaint
If you believe your rights under GINA or state genetic privacy laws have been violated by any party (not just Atlagene), you may file a complaint with the appropriate agency:
Health Insurance Discrimination (GINA Title I)
U.S. Department of Health and Human Services
Office for Civil Rights
200 Independence Avenue, S.W.
Washington, D.C. 20201
Phone: 1-877-696-6775
Website: www.hhs.gov/ocr/complaints
Employment Discrimination (GINA Title II)
U.S. Equal Employment Opportunity Commission (EEOC)
131 M Street, N.E.
Washington, D.C. 20507
Phone: 1-800-669-4000
Website: www.eeoc.gov/filing-charge-discrimination
Important: You must file an EEOC charge within 180 days of the alleged discriminatory act (or 300 days if your state has a local anti-discrimination agency that enforces a similar law).
State-Specific Complaints
For violations of state genetic privacy laws, contact your state attorney general's office or state civil rights agency. Many states have their own enforcement mechanisms with potentially greater remedies than federal law. You can find your state attorney general at www.naag.org/find-my-ag.
8. Important Disclaimer
This GINA Notice is provided by Atlagene for educational and informational purposes only. It is not legal advice. The information contained herein is a summary of federal and select state laws and may not reflect the most recent legal developments or the specific laws applicable to your situation. If you have questions about your rights under GINA or state genetic privacy laws, or if you believe your rights have been violated, we strongly recommend that you consult a qualified attorney or contact the relevant enforcement agency directly.
Questions
For questions about GINA, your genetic privacy rights, or how Atlagene protects your genetic data, contact us at privacy@atlagene.com.