BY SARAH ROTH, MFA
Ginahelp.org provides an introduction to GINA and its protections in health insurance and employment.
Knowledge can be both frightening and empowering, and knowledge of your child’s predisposition for a genetic condition is no exception. Moreover, the decision to pursue genetic testing can provide as many questions as answers. From a small sample of skin, saliva or blood, your family is given a set of signs—pluses, minuses, numbers and letters—that foretell the ways in which your child’s genes might shape his or her long-term experience. Fortunately, some crucial resources can help your family to feel supported and savvy as you navigate testing, care and plans for the future.
One of these resources is ginahelp.org. Curated by Genetic Alliance, the website explains your child’s rights under the Genetic Information Nondiscrimination Act (GINA) of 2008. GINA ensures that your child will be protected from genetic discrimination in the workplace as well as in the health insurance marketplace. From testing, to diagnosis, to treatment and long-term care, GINA allows your child’s genetic information to remain your child’s genetic information.
Clarice Morris,1 a mother from Tulsa, Oklahoma, shares the story of her son’s experience with genetic testing and predictive diagnosis in Genetic Testing Stories. When Jeff, Clarice’s husband, was diagnosed with von Hippel-Lindau (VHL) Syndrome in 1992, Clarice decided to have her two children screened for the mutation behind VHL. The results of her daughter’s test were negative. The results from her son’s test were positive.
Clarice writes, “We were offered further contact with our genetic counselor following the results of the tests. The tests were very beneficial, in that they let our family know what we were dealing with. My son’s health has been monitored regularly since his diagnosis” (49). Today, Clarice’s son has two sons of his own. Each has been screened for VHL, and each test came back negative.
With the holidays approaching, you may be wondering when or if this is the right time to share your news or concerns. It’s family, right? If you’ve recently learned of a predictive or definitive diagnosis, you may be asking yourself a number of questions.
GINA & YOUR JOB
How will this information shape my child’s experience when he or she enters the workforce?
GINA makes it against the law for employers to use your genetic information in the following ways:
• To make decisions about hiring, firing, promotion, pay, privileges or terms
• To limit, segregate, classify, otherwise mistreat an employee
This means that it’s illegal for your child’s employers to use family health history and genetic test results to make decisions about his or her employment. It’s also illegal for an employer to request, require or purchase your child’s genetic information—whether your child is an applicant, a current employee or the partner of a current employee. There are a few exceptions to this rule (see:ginahelp.org). If, within one of these exceptions, an employer does hold your child’s genetic information, they will keep it in a distinct and confidential medical file.
Boiled Down: Employers can’t use your family health history to make employment decisions.
GINA & YOUR HEALTH INSURANCE
Will my child be eligible for health insurance?
GINA makes it against the law for health insurers to request, require, or use genetic information to make decisions about:
• Your eligibility for health insurance
• Your health insurance premium, contribution amounts, or coverage terms
This means that it’s illegal for your health insurer to use a genetic test result or family health history as a reason to deny you health insurance, or to determine the cost of your health insurance. In addition, GINA makes it against the law for your health insurer to:
• Consider family history or a genetic test result a pre-existing condition
• Ask or require that you have a genetic test
• Use any genetic information they do have to discriminate against you, even if they did not mean to collect it
Fact: Companies cannot use your family health history to deny your child health insurance.
While ginahelp.org can help to answer some of your questions, you may still feel uneasy about what to share and with whom. And although GINA protects individuals from certain discrimination, GINA does not prevent long-term care, disability or life insurance providers from using genetic test results to make decisions about your coverage.
Another resource that may be helpful before, during, and after genetic testing is GenesinLife.org. Genes in Life compares different types of tests, as well as what information can and can’t be discovered from testing. You should consider making a list of benefits and possible risks for genetic testing and whether the results of the test will provide your family with relief. For talking through the decision to pursue genetic testing, and for determining what course of action will best suit your family’s needs, a genetic counselor is the ultimate resource.
SHARING YOUR DIAGNOSIS
How do I broach the topic with my child and/or family?
Deciding to share your, or your child’s, test results or diagnosis with your family can be a difficult decision. And knowing when to bring up the subject, especially if the results infer that others could be affected, can be very stressful. Genetic Alliance has created several resources for families on sharing your diagnosis, discussing family health history and when and why to seek advice from a genetic counselor.
When Jeff was diagnosed with VHL in 1992, Clarice used this information to screen early, take preventative measures, and ensure her son’s long-term health. With resources such as genetic counseling, tools like GenesInLife.Org and ginahelp.org, and under the protection of legislation like the Genetic Information Nondiscrimination Act, knowledge of your Family Health History can brighten your family’s health future. As Angelina Jolie has recently remarked on her struggle with the BRCA1 gene, “knowledge is power.” Sometimes, the right resources can steady our ships amid storms of unease from a new diagnosis. From a place of informed calm, we can trust ourselves to make the right – the empowered – dare I say it, the best decisions for ourselves and for our families. •
ABOUT THE AUTHOR:
Sarah Roth is Program Coordinator for Genes in Life. She is interested in the relationship between storytelling and health support systems. She received her MFA from the University of Notre Dame and her BA from Washington University in St. Louis. Sarah can be found @selizabethroth
WHAT IS GINA? The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects individuals from genetic discrimination in health insurance and employment. Genetic discrimination is the misuse of genetic information. Ginahelp.org provides an introduction to GINA and its protections in health insurance and employment.
GENETIC TESTING STORIES
In this monograph, Genetic Alliance collected the stories of men, women and children with experiences of genetic testing. The monograph is grouped by testing type and by condition. These stories convey the diverse voices of individuals, families and communities with genetic conditions. Every health experience is an odyssey.
Genetic Alliance, Parent to Parent USA, and Family Voices created this roadmap of resources across the life course for individuals with special healthcare needs and their families. The site includes tangible tools, templates, and tips created by parents, parent advocacy groups, disease-specific advocacy groups, disability groups, and other partner organizations and are grouped by category to be easily accessible. Each page includes a story from a person on their own journey advocating for services, supports, and access.