Finding Health Care
Insurance and privacy issues
(adapted from the brochure Genetic Information, Privacy and Discrimination: What You Need to Know. Copyright FORCE: Facing of Cancer Empowered, National Society of Genetic Counselors, 2003)
Laws against genetic discrimination
Important note: The Genetic Information Nondiscrimination Act (GINA) was signed into law on May 21, 2008. This legislation is federal legislation that prohibits health insurance and employment discrimination on the basis of genetic information or a genetic test result. The health insurance protections offered by GINA took effect in May 2009, the employment protections will be fully realized in November 2009.
With regard to health insurance discrimination, the Act:
- prohibits enrollment restriction and premium adjustment on the basis of genetic information;
- prevents health plans and insurers from requesting or requiring that an individual take a genetic test;
- prevents health plans and insurers from pursuing or being provided information on predictive genetic information or genetic services prior to enrollment – the time when this information is most likely to be used in making enrollment decisions;
- covers all health insurance programs, including those regulated by the federal government under ERISA, state-regulated plans, Medigap, and the individual market.
With regard to employment discrimination, the Act will:
- prohibit discrimination in hiring, compensation, and other personnel processes;
- prohibit the collection of genetic information, and allow genetic testing only to monitor the adverse effects of hazardous workplace exposures;
- require genetic information possessed by employers to be confidentially maintained and disclosed only to the employee or under other tightly controlled circumstances;
- cover employers, employment agencies, labor organizations, and training programs.
Genetic information can refer to family history of a disease or a genetic test result. Genetic discrimination occurs when a person is treated differently because he or she has an inherited disorder or is at risk to develop an inherited disorder. Most concerns about genetic discrimination relate to discrimination by health insurance companies and by employers.
There are other federal and state laws that protect against genetic discrimination but they do not protect everyone. Because laws are constantly changing, you may want to research the most current laws by speaking with a genetics professional in your area.
Every state defines genetic information differently and each state offers different protection forf genetic information. Most states have some laws to prevent insurance companies and employers from discriminating based on a hereditary risk for disease. However, not every state offers the same protections, and some states have not yet passed laws prohibiting genetic discrimination. You may want to research and understand how your state defines genetic information. The National Conference of State Legislatures has a state-by-state list of laws pertaining to genetic tests.
The Health Insurance Portability and Accountability Act (HIPAA) protects people with group health insurance against being denied insurance, having their insurance canceled, or having their rates individually increased due to any pre-existing condition. For HIPAA protection to apply, an individual must have had health insurance for at least 12 months without a lapse of 63 consecutive days or longer.
Although HIPAA prohibits discrimination against an individual with group insurance coverage based on any medical condition, it does not prohibit the insurance company from denying coverage to or increasing the rates of the entire group based on the medical records of one member of the group. HIPAA does not prevent insurance companies from requiring applicants to reveal whether they have had genetic testing in order to enroll in their group plans, even though the insurance companies are not allowed to use this information. Further, HIPAA laws do not provide protection to people covered by individual health insurance plans.
Federal employees have additional protection. An executive order enacted in 2000 prohibits discrimination in federal employment based on genetic information. There are currently no federal laws providing adequate protection against life or disability insurance discrimination based on hereditary disease risk.
Risk of genetic discrimination
Although many people cite fear of genetic discrimination as the reason they do not pursue genetic testing, documented cases of genetic discrimination are rare. However, a study published in the American Journal of Medical Genetics, the authors found that people with inherited disorders or inherited risk were very concerned about genetic discrimination. They also found that there were some gaps in protection despite laws to protect individuals from workplace and insurance discrimination.
Some health care providers and advocacy groups believe that genetic discrimination could become more common if more federal laws are not enacted. In addition, there is a perception on the part of the public and some health care providers that there is a significant risk of genetic discrimination, particularly in health insurance. This perception is keeping many people from taking advantage of genetic tests that could make a significant difference in their health care decisions and outcomes. This fear also prevents many people from becoming involved in the medical research that could provide better information and choices for those affected by hereditary diseases in the future. In one study, researchers found that 39% of those surveyed listed fear of genetic discrimination as the most important reason for not pursuing genetic testing.
According to Dr. Francis Collins, director of the National Human Genome Research Institute, all diseases are affected by hereditary factors. “The study of the genome will reveal over the next decade the hereditary factors that contribute to virtually all common diseases, including diabetes, cancer, heart disease, mental illness, hypertension, and many others.”
Therefore, anyone could be at risk for genetic discrimination. Family medical history could be considered “genetic information” and could be the basis for genetic discrimination even for someone who has never had genetic testing.
It is important for anyone considering genetic testing to weigh the potential benefit of a genetic test against the fear of discrimination, and it is important to base the decision whether or not to have genetic testing on credible and up-to-date information received from a genetics specialist. To find a genetic counselor, visit our section on this topic.
Genetic privacy
HIPAA includes a privacy rule that requires health care professionals to notify you about your privacy rights and how your information can be used. The privacy rule provides for the release of your medical information (including genetic test results) for certain specified purposes, including the release to insurance companies for payment. However, in most instances, the privacy rule requires your permission before your health information can be shared with individuals or organizations. It is important to read and understand your health care providers’ policies and any medical release forms before signing them.
Some states have genetic privacy laws which offer more protection. The laws vary on what information is protected, whether a separate release must be signed before information can be shared with certain third parties and what penalties (if any) apply for violations. Because laws are constantly changing, you may want to research the most current laws in your state.
Genetic discrimination resources
Anyone who feels that they have been subjected to discrimination by an insurance company based on genetic information can contact their state insurance commissioner’s office.
Victims of genetic discrimination in the workplace can contact the Equal Employment Opportunity Commission (EEOC) which is the organization responsible for enforcing the Americans with Disabilities Act. The EEOC may be able to help some, but not all, applicants and employees who believe they have been subjected to genetic discrimination. Individuals who believe that they have faced discrimination on this basis should contact their local EEOC office. Local EEOC offices can be identified by consulting the Commission’s website, the federal government listings in the telephone directory, or by calling a toll-free information number at (800) 669-4000 or (800) 669-6820 (TDD). Time frames control the filing of charges of employment discrimination. Private sector employees may have as little as 180 days from the date of the alleged discriminatory act to initiate a claim. Federal government employees must contact an EEO counselor at their agency within 45 days of the act of alleged discrimination.
(Source: Communication with the EEOC)
Other websites
Genetic
Discrimination Resources
The Genetic Alliance site includes this good collection of links to information
provided by government agencies, advocacy groups, and academia.
Coalition for Genetic Fairness resources about GINA
HealthCareCoach.com
A wide range of useful information about health insurance and other subjects
related to health and wellness. The site's Action Center provides resources
to help health care consumers understand and exercise their rights. The site
is produced by the nonprofit National Health Law Program.
The National Partnership for Women and Families, a public education and advocacy group, offers another good introduction to issues, legislative protection that currently exists at the federal and state level, and bills that have been introduced in Congress.
Equal Employment Opportunity Commission (EEOC)
The
organization responsible for enforcing the American with Disabilities Act.
The EEOC may be able to help some, but not all, applicants and employees who
believe they have been subjected to genetic discrimination.
Expanded
Insurance Coverage for Breast Reconstruction for Mastectomy Patients
A brief article describing aspects of the Women’s Health and Cancer Rights
Act of 1998 and links to more information from the government agencies responsible
for implementing this legislation.
MyPHR
Information on issues such as the ownership, access, and accuracy of your medical
information. The site is produced by the American Health Information Management
Association.
Viewing Your Health
Insurance Record
You can request a copy of your record from MIB Group, Inc., which provides
insurance companies with medical information about individuals who apply for
policies. There is a small fee, which may be waived if you have received notification
of an "adverse action" from a company for whom MIB provides data.
Patient Advocate Foundation
"A national nonprofit organization that serves as an active liaison between
patient and their insurer, employer and/or creditors to resolve insurance, job
discrimination and/or debt crisis matters relative to their diagnosis through
case managers, doctors and attorneys."
National Health Law Program
Getting the Best out of Managed Care: three fact sheets from the National Health Law Program, an organization that works
to improve access to health care for low-income people.
- Getting the Best out of Managed Care: #1 How can this information help me?
- Getting the Best out of Managed Care: #2 Understanding Quality Measures
- Getting the Best out of Managed Care: #3 Figuring Out Which Health Care Plan Meets Your Needs
State Insurance
Regulators
Find the links to your state's Department of Insurance.
State Genetics
Laws and Legislative Activity
From the National Conference of State Legislatures.
National Human Genome Research Institute's pages on genetic discrimination laws, including its database of federal and state policy and legislation relating to genetic discrimination.
Further reading
Preempting
Genetic Discrimination and Assaults on Privacy: Report of a Symposium
Aileen
Shinaman, Lisa J. Bain, Ira Shoulson. American Journal of Medical Genetics.
Volume120A, Issue 4: p. 589-93, August 2003.
Life
Insurance and Breast Cancer risk Assessment: Adverse Selection, Genetic
Testing Decisions, and Discrimination
Katrina Armstrong, M.D., M.S.C.E.
Barbara Weber, Genevieve FitzGerald, John C. Hershey, Mark V. Pauly, Jean
Lemaire, Krupa Subramanian, David A. Asch. American Journal of Medical
Genetics. Volume 120A, Issue 3: p. 359-364, July 2003.
Genetic
Counseling and Testing in Families With Hereditary Nonpolyposis Colorectal
Cancer
Donald W. Hadley, Jean Jenkins, Eileen Dimond, Kenneth Nakahara,
Liam Grogan, David J. Liewehr, Seth M. Steinberg, Ilan Kirsch. Archives
of Internal Medicine. Volume 163, Number 5: p. 573-582, March 2003.