BILL NUMBER: S1208REVISED 2/12/24

SPONSOR: PERSAUD
 
TITLE OF BILL:

An act to amend the civil rights law, in relation to requiring genetic
testing results only be received by patients and health care providers
providing direct care while health insurance companies only receive a
record that the genetic testing was performed for payment purposes

 
PURPOSE OR GENERAL IDEA OF BILL:

This bill requires that genetic testing results be shared only by
patients and health care providers and that health insurance companies
only receive information on the fact that a genetic test was done.

 
SUMMARY OF SPECIFIC PROVISIONS:

Section 1. Subdivision 3 of section 79-1 of the civil rights law is
amended to include language that states test results confirming genetic
:est were performed is enough information for health insurers or health
maintenance to perform claim administration duties. In addition, no
              

health insurer or life insurer should demand to see results of genetic
test, nor base their policies on the findings of genetic test, including
taking any adverse action against a policyholder because they cannot
access their genetic test results or findings.

Section 2. Provides for the effective date.

 
JUSTIFICATION:

Under the Genetic Information Nondiscrimination Act (GINA) of 2008,
Americans are protected from genetic information based discrimination
from health insurance companies and employers. GINA is supposed to
prevent health insurance companies from using the results of a genetic
test against policyholders to do things like cancel their health insur-
ance or raise their rates. What GINA does not protect is the other types
of insurance companies, such as life insurance, from using your genetic
test results against you.

Life insurance companies can raise the cost of plans based on your
genetic information. If a perspective policyholder is found to have a
genetic dispositions that make them more likely to get a certain
illness, then they will face higher rates as they are seen as "higher
risk". According to the National Institute of Health, genetic test can
currently detect 450 diseases, most of which are rare. The detection of
these diseases can be used to inform people of genetic variations that
they have which led to them having the disease. If a person has a genet-
ic deposition, but has not developed the disease, this information can
help prevent or treat the person before their disease ever develops.

Yet because of possible retaliation from insurance companies, in the
form of higher rates, many people choose to not have genetic tests to
help inform them of possible genetic based illnesses. The National
Institute of Health states how 22 percent of Americans with genetic
disorders or having relatives with genetic disorder have been denied
health insurance because of their genetic information. A report from The
Society of Actuaries explains that only the applicant for insurance
knows of the results of genetic test results, but that the applicant and
insurance company know about the family history. When both parties know
the history, claim cost are projected to rise by 3 percent each year
from 2016 to 2035, based on the face amount cost of the average policy
plan. In addition, all women will face higher life insurance claims due
to genetic test results. Currently females make up less than 30 percent
of all baseline claims, but 50 percent of claim costs from genetic tests
leading to higher costs.

This issue becomes more prevalent as the cost of a genetic test per
genome is less than 1,000 dollars per genome, when 20 years ago it was
at 100 million dollars per genome. This means that more people will be
able to get a genetic test, which can be a necessity in preventative
health care, in order to best treat a patient with a possible family
history of a disease. Yet, a patient may be too afraid to be tested due
to insurance cost, which can hurt their overall health, as you lose the
opportunity to detect a possibly deadly disease.

This bill aims to protect and promote the privacy of policyholders in
regards to genetic testing information not being accessible to insurance
companies in order to protect the policyholder's privacy and prevent
increase in claims due to genetic information.

 
PRIOR LEGISLATIVE HISTORY:

2022: S8631 referred to Codes

 
FISCAL IMPLICATIONS:

None

 
EFFECTIVE DATE:
The act shall take effect on the ninetieth day after it shall become
law.