BILL NUMBER: S5415A

SPONSOR: HOYLMAN-SIGAL
 
TITLE OF BILL:

An act to amend the insurance law, in relation to prohibiting insurance
companies from discriminating based on genetic predisposition; and to
repeal certain provisions of such law relating thereto

 
PURPOSE:

This bill will protect individuals from being discriminated against due
to a genetic predisposition.

 
SUMMARY OF PROVISIONS:

Section one sets the name of the bill, which shall be known and may be
cited as "the genetic testing protection act of New York".

Section two of the bill repeals § 2615 of the insurance law and adds a
new § 2615 relating to discrimination based on genetic predisposition.
Subdivision (a) prohibits life, accident, health, disability, long term
              

care, or medical indemnity insurers from conditioning insurance rates,
renewals, or any other coverage on the agreement of an individual to
undergo. genetic testing. This subdivision also precludes insurers from
requiring or soliciting genetic information, using genetic testing
results, or consider a person's decisions or actions related to genetic
testing for insurance purposes.

Subdivision (b) prohibits life, accident, health, disability, long term
care, or medical indemnity insurers from refusing to issue, renew,
cancel, or alter the terms or conditions of coverage of a policy based
on a genetic predisposition of an individual or a member of their fami-
ly.

Subdivision (c) states that nothing in this section shall be construed
to prevent an insurer from accessing an individual's medical records if
otherwise provided by law. This subdivision also provides that this
section does not prohibit insurers from consideration a medical diagno-
sis, including an individual's medical records, even if a diagnosis was
made based on the results of a genetic test.

Subdivision (d) states "genetic testing" and "genetic predisposition"
shall have the same meaning as in section seventy-nine-1 of the civil
rights law.

Section three of the bill provides the effective date.

 
JUSTIFICATION:

Due to the recent rise in direct-to-consumer genetic testing such as
"23andMe" and "Ancestry", there is also recent interest in the use of
genetic testing results in life insurance practices.

Genetic information helps you know and understand health conditions that
run in your family, as well as your risk for developing certain health
conditions or having a child with certain conditions. This information
can help you make healthy lifestyle choices and important life and

medical decisions. It also helps your doctor in providing you the best
care possible.

The Genetic Information Nondiscrimination Act of 2008 (GINA) is a feder-
al law that protects individuals from genetic discrimination in health
insurance and employment. Genetic discrimination is the misuse of genet-
ic information. Though GINA prevents against genetic discrimination in
health insurance and employment instances, when it comes to life insur-
ance there are no such protections. Life insurance agencies have the
ability to deny individuals who carry certain genes and leave them with-
out life insurance policies. Many who would like to have genetic testing
done are afraid to do so, due to the chances of losing their coverage.
Consumers should not be hindered in their ability to better understate
their ancestry and genetic composition at the expense of being able to
financially protect themselves and their loved ones in the event of
their death.

A study by the Cornell Personalized Medicine Collaborative shows that we
can only estimate the percent of a disease or trait that is due to
genetic factors (heritability) and the percent of a disease or trait
that is due to non-genetic factors, like lifestyle and environment.
Only 21% of the risk for melanoma is believed to be due to genetic
factors and 79% is believed to be due to non-genetic factors such as sun
exposure. Additionally, according to the Cystic Fibrosis Foundation, if
someone with Cystic Fibrosis has a child, the chances are 50% (1 in 2)
the child will be a carrier but will not have CF and 50% (1 in 2) the
child will have CF.

A study done by the Institute of Statistics and Decision Sciences from
Duke University found that 85% of female breast cancer carriers will get
breast cancer, and 65% of women who are ovarian cancer carriers will get
ovarian cancer, by the age of 70 years. This means that there is still a
chance that women who are carriers of either breast cancer or ovarian
cancer will not develop the disease. The National Cancer Institute stat-
ed that even when people have one copy, of a dominant cancer-predispos-
ing mutation, two copies of a recessive mutation, or, for males, one
copy of an X-linked recessive mutation, they may not develop cancer.
Some mutations are "incompletely penetrant," which means that only some
people will show the effects of these mutations. Mutations can also
"vary in their expressivity," which means that the severity of the symp-
toms may vary from person to person.

Therefore, not everyone who is a carrier of a disease will develop the
disease. It is unjust to strip New Yorker's of their right to life
insurance based only on the fact that they have a genetic predisposition
to a certain disease, with no guarantee that the individual will develop
the disease of the gene they carry. Life insurance companies should not
cancel, refuse to issue or renew, charge an increased rate, restrict any
length of coverage or in any way practice discrimination against a
person unless reliable information relating to the insured's mortality
or morbidity, based on sound and actuarial principles or actual, reason-
ably anticipated claim experience is found.

 
PRIOR LEGISLATIVE HISTORY:

2022: A.9837 - Insurance

2018: A.10229 - Insurance
 
FISCAL IMPLICATIONS:

None to the State

 
EFFECTIVE DATE:
Immediately.