Genetic Test Information Impact on Life Insurance Rates and Privacy

Genetic testing results could possibly affect your premium rate when applying for life insurance, but the conditions that would negatively affect rates appears narrow.

Privacy Trade Off
You may feel inclined not to share genetic information for the sake of privacy or the concern your information will be shared or stolen. Keep in mind obtaining individual life insurance is voluntary. An applicant gives up their health information privacy in order to obtain coverage. The advantage in allowing access to all your information, fully underwritten life insurance, is to get the lowest premium with the broadest most favorable product selection and the highest amounts of coverage. Genetic test information is likely going to get swept up in the process unless you’re young or in excellent health to qualify for expedited underwriting. Life insurance companies have experienced data breaches, but they are part of a wider trend affecting millions across multiple business and government entities. Life carriers have done more to firewall their information, but only time will tell how effective their measures will be.

An applicant for life insurance gives up their health information privacy in order to obtain coverage. It’s voluntary to obtain the lowest premium and most favorable coverage. Genetic test information is likely going to get swept up in the process unless you’re young or in excellent health are allowed expedited underwriting.

Testing the Waters Confidentially
If you’re concerned about how your genetic testing results will affect your application and wish to retain your privacy, try an informal quote request to the major carriers. Brokers like myself can put together an anonymous summary of your information: age, height, weight, medications, health history and life insurance carriers will respond with a tentative rate class in one to two business days. At that point you will know if relinquishing your privacy to obtain coverage is feasible before making a decision to go forward.

Application Step One: Script check, MIB Check
Underwriters first line of review are the prescription databases and the medical information board (MIB) that codes the activity of previous life applications. It helps immensely to avoid medical records requests if you have never taken prescription medications, or your prescription for a common medication is fully explained on the application. Underwriters also review paramed test results and depending on the applicant’s age and information, they decide whether to request medical records from the primary care physician or specialists.

Have you shared your genetic test information with your primary care physician or a specialist? If you have then the carrier will review what you have discussed and if additional genetic tests were recommended. Can that genetic information or discussions be redacted and treated as confidential? No. You can try, but that request is likely to go nowhere.

Will your genetic testing information affect the underwriter’s decision? It’s possible. One can not categorically rule it out. Genetics already plays a part in rate classifications. Each carrier has family history underwriting guidelines for cardiovascular disease and cancer. Generally having a parent under age 60 have had or passed away from one or both of these conditions disallows the preferred best rate. Carriers may consider exceptions on larger premium cases. If you don’t like a decision a carrier has made, the agent can shop your case with a summary to try and get a better offer.

Is a genetic record review valid or necessary? Parsing the following article, though limited in scope there is a sufficient population base per 100,000 to justify life insurance underwriting’s attention: hereditary cancers, early-onset Alzheimer’s Disease, a much smaller subset of amyotrophic lateral sclerosis (ALS). Life carriers don’t want to be stuck assuming unwarranted risks associated with major health conditions omissions and misrepresentations.

Time to End the Use of Genetic Test Results in Life Insurance Underwriting
Mark A. Rothstein, J.D. 
Published in final edited form as: J Law Med Ethics. 2018 Sep; 46(3): 794–801

“Relatively few genetic-related disorders have demonstrable importance for medical underwriting in life insurance because they must have the following six characteristics…..Some conditions meeting these six criteria are early-onset Alzheimer’s disease; some neurodegenerative diseases, such as amyotrophic lateral sclerosis and Huntington disease; some hereditary cancers, such as some breast and colon cancers; and some syndromic conditions, including Li-Fraumeni syndrome and Lynch syndrome.”

State Genetic Privacy Laws (state by state basic guide)

“State genetic privacy laws typically restrict any or certain parties (such as insurers or employers) from carrying out a particular action without consent. Laws in 16 states require informed consent for a third party either to perform or require a genetic test or to obtain genetic information. Twenty-four states require informed consent to disclose genetic information. In addition, Rhode Island and Washington require written authorization to disclose genetic information. Alaska, Colorado, Florida, Georgia, and Louisiana explicitly define genetic information as personal property. Alaska also extends personal property rights to DNA samples. In 2001 Oregon repealed its property right to DNA samples and genetic information. Four states mandate individual access to personal genetic information, and 18 states have established specific penalties – civil, criminal or both – for violating genetic privacy laws.”


Florida
Florida Law HB 1189 (2020) Genetic Information for Insurance Purposes, Effective date: 7/1/2020
:(2) USE OF GENETIC INFORMATION.—
(a) In the absence of a diagnosis of a condition related to genetic information, health insurers, life insurers, and long-term care insurers authorized to transact insurance in this state may not cancel, limit, or deny coverage, or establish differentials in premium rates, based on such information.
(b) Health insurers, life insurers, and long-term care insurers may not require or solicit genetic information, use genetic test results, or consider a person’s decisions or actions relating to genetic testing in any manner for any insurance purpose.”

California

Senate Bill 41 Genetic Information Privacy Act, Approved by Governor October 6, 2021

“(f) (1) Notwithstanding any other provision in this section, and except as provided in paragraph (2), a direct-to-consumer genetic testing company shall not disclose a consumer’s genetic data to any entity that is responsible for administering or making decisions regarding health insurance, life insurance, long-term care insurance, disability insurance, or employment or to any entity that provides advice to an entity that is responsible for performing those functions.
(2) A direct-to-consumer genetic testing company may disclose a consumer’s genetic data or biological sample to an entity described in paragraph (1) if all of the following are true: (A) The entity is not primarily engaged in administering health insurance, life insurance, long-term care insurance, disability insurance, or employment. (B) The consumer’s genetic data or biological sample is not disclosed to the entity in that entity’s capacity as a party that is responsible for administering, advising, or making decisions regarding health insurance, life insurance, long-term care insurance, disability insurance, or employment. (C) Any agent or division of the entity that is involved in administering, advising, or making decisions regarding health insurance, life insurance, long-term care insurance, disability insurance, or employment is prohibited from accessing the consumer’s genetic data or biological sample.”