Protect Yourself - Know the Limits of the Genetic Privacy Laws
So, it is important that we patients know the limits of a key federal privacy laws that protects us when we do have genetic testing.
MUSIC
This is Joel Nowak for Cancer ABCs.
Genetic testing now plays a major and an ever-increasing role in the management of many different cancers, including prostate cancer. It also plays an increasing role in the identification of risks for cancer, so it is important that we patients know the limits of a key federal privacy laws that protects us when we do have genetic testing.
In June, 2020, there was a new set of recommendations on the use of genetic testing published by the International Philadelphia Prostate Cancer Consensus Conference that strongly endorses the testing of all men with metastatic prostate cancer to aid with treatment decisions and to assess eligibility for clinical trials.
It is important that we understand that there are limits to the Genetic Information Nondiscrimination Act (GINA) of 2008, which was written to protect against discrimination in employment and medical insurance for people with known genetic risk factors for diseases, including cancer.
GINA as well as the patch work of different state regulations may not protect us if they are looking to purchase either disability or long-term care insurance.
GINA builds on the protections offered by the Americans With Disabilities Act of 1990 or ADA, but there are important distinctions. The distinctions result from the history how these laws were developed.
The regulations known as ADA and other similar laws, such as the Rehabilitation Act of 1973, were passed by congress because patients were subjected to patterns and practices of discrimination when they had a disability.
GINA was enacted because of concerns that people would be reluctant to undergo genetic testing or to participate in research projects that involved the collection of their genetic information, or their DNA. It had nothing to do with physical or mental symptoms as the ADA.
For example, if you have a predisposition to a disease discovered by genetic testing, but don’t have symptoms of the disease you would have protection under GINA but not under the ADA regulations. In order to qualify under ADA you need to have symptoms, or a physical or mental disability that substantially limits a major life function or ability.
It is true, many states do have some regulations that address the potential misuse of genetic information. For example, New York State prohibits discrimination on the basis of "predisposing genetic characteristics" but this is in the narrow context of hiring, retaining, and or discharging employees.
A "handful" of states, including California, have laws that prohibit genetic discrimination in housing, lending, and land use.
At best there is a jumble of disparate regulations that vary state to state. Many states have no or minimal regulations and those that do have regulations are inconsistent in what they actually cover. The domains which might be covered could include discrimination in purchasing life insurance, long-term care insurance, disability insurance, health insurance, employment, and housing, but there is a wide variation in coverages among states, and most states lack adequate coverage, protections, or remedies.
The time has come for Congress to catch up and amend GINA to include full nationwide protections for patient’s, protection against discrimination because of genetic predispositions in the sale of life insurance or long-term care insurance, as well as in employment and land use.
Without these changes many of us will be hesitant to move forward with the best standard of care, genetic testing. Genetic testing will help us to find the best treatments as well as allow us to know who will need to start screening programs to “catch” a cancer while it remains easily treated.
This has been Joel Nowak for Cancer ABCs.
Remember, when you are considering genetic testing make sure you have applied for all of the insurance you may need prior to getting the test.