BILL NUMBER: S8631

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 that test results confirming
genetic test 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 genet-
ic 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 do not take genetic test 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 Actu-
aries 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 histo-
ry, 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 addi-
tion, 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 lead-
ing 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.

The protection and promotion of policyholder's privacy extends to clos-
ing the loophole in New York Civil Rights Law S79-1 of 1996 granting the
use of genetic test results for research purposes. This bill will ban
the use of genetic test results for research purposes closing an avenue
that insurance companies could use to get policyholders genetic test
results.

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:

New bill

 
FISCAL IMPLICATIONS:

None

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