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Privacy & Legal Issues

Learn how to locate medical experts for risk management and long term follow up care.

Related Force Information

GINA update: The newly enacted federal ban on genetic discrimination and what it means for you
Webinar presented by Jennifer R. Leib, Sc.M., C.G.C. Partner, HealthFutures LLC (a CRD Associates Company) focusing on the protections afforded by the Genetic Information Nondiscrimination Act (GINA) and the gaps that remain after its enactment.

Insurance Coverage for Cancer Genetic Counseling
Fall 2011 Joining FORCEs Newsletter article about how insurance companies are required to cover genetic counseling as part of preventive care under the Health Care Reform Act.

Books

Breast Cancer: Covered or Not?
A free resource from the Pennsylvania Breast Cancer Coalition that has information on what insurance companies are required to cover for breast cancer treatment. Has helpful information on writing appeals for coverage.

Other Websites

Genetic Information Nondiscrimination Act Website
Website developed by the Genetic Alliance which provides an introduction to the Genetic Information Nondiscrimination Act and its protections in health insurance and employment. It includes answers to common questions about GINA.

Health Care Coach
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.

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.

U.S. Equal Employment
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.

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.

Request Your MIB Consumer File
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

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
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.

Medicare coverage criteria for genetic testing
This site links criteria for BRCA testing coverage under Medicare.

Healthcare.gov
Website administered by the U.S. Department of Health & Human Services which provides information about health care and insurance provisions.