Requires 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; provides insurers cannot require access to genetic testing results and cannot take adverse action against someone for not providing genetic testing results.
NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A7451
SPONSOR: Solages 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:
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:
Section 1. Amends subdivision 3 of section 79-1 of the civil rights law.
Section 2. Sets 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. However, GINA does not
protect insurance companies from using genetic tests against clients to
raise rates or cancel policies.
Revealing genetic testing results to health insurance companies could
potentially lead to discriminatory practices. Insurers might deny cover-
age, increase premiums, or limit benefits based on an individual's
genetic predispositions or risks. This creates an unfair and discrimina-
tory healthcare system that punishes individuals for factors beyond
their control. The National Institute of Health states that 22% of Amer-
icans with genetic disorders have been denied health insurance because
of their genetic information. By limiting access to genetic test results
for insurance purposes, the law ensures fair access to healthcare
services, regardless of an individual's genetic profile. It promotes
equal treatment and prevents discrimination based on genetic informa-
tion, fostering a more just and inclusive healthcare system.
RACIAL JUSTICE IMPACT:
There is concern that access to genetic information by insurance compa-
nies could be used to discriminate against individuals based on their
race or ethnicity. Insurance companies may use genetic test results as a
pretext to engage in behavior such as increasing rates or denying cover-
age based on the person's ethnicity/race. By limiting the access of
health insurance companies to genetic testing results, the law helps
mitigate potential discrimination and disparities in healthcare. It
prevents insurers from using genetic information to deny coverage or
charge higher premiums based on an individual's racial or ethnic back-
ground.
GENDER JUSTICE IMPACT:
To highlight how insurance companies have historically discriminated
against women based on genetic testing, a well-known example is genetic
testing for breast cancer susceptibility, specifically the BRCA1 and
BrRCA2 genes. These gene mutations significantly increase a woman's risk
of developing breast and ovarian cancers. Insurance companies have been
known to discriminate against women who test positive for these muta-
tions by denying coverage, charging higher premiums, or excluding cover-
age for breast and ovarian cancer treatments. A study published in the
Journal of Clinical Oncology found that 6.3% of women with a BRCA1/2
mutation reported insurance discrimination, including denial of coverage
or increased premiums. Genetic testing results have also been used by
life insurance companies to discriminate against women. Women who test
positive for certain genetic mutations may face higher premiums or even
denial of coverage. Insurers argue that these genetic markers indicate
an increased risk of developing certain health conditions, and there-
fore, they justify discriminatory practices. This places an unfair
burden on women, limiting their access to necessary insurance coverage
and potentially affecting their financial security.This legislation will
prevent insurance companies from discriminating against women based on
genetic test results that are beyond their control.
PRIOR LEGISLATIVE HISTORY:
2021-22: A9929; referred to governmental operations.
FISCAL IMPLICATIONS:
TBD.
EFFECTIVE DATE:
This act shall take effect on the ninetieth day after it shall have
become a law and shall apply to policies and contracts issued, renewed,
modified, altered, or amended on or after such date.
STATE OF NEW YORK
________________________________________________________________________
7451
2023-2024 Regular Sessions
IN ASSEMBLY
May 22, 2023
___________
Introduced by M. of A. SOLAGES -- read once and referred to the Commit-
tee on Governmental Operations
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
The People of the State of New York, represented in Senate and Assem-bly, do enact as follows:
1 Section 1. Subdivision 3 of section 79-l of the civil rights law, as
2 added by chapter 497 of the laws of 1996, is amended and a new subdivi-
3 sion 12 is added to read as follows:
4 3. (a) All records, findings and results of any genetic test performed
5 on any person shall be deemed confidential and shall not be disclosed
6 without the written informed consent of the person to whom such genetic
7 test relates. This information shall not be released to any person or
8 organization not specifically authorized by the individual subject of
9 the test. Unauthorized solicitation or possession of such information
10 shall be unlawful, except for the unintentional possession of such
11 information as part of a health record created prior to the effective
12 date of this section and provided no action adverse to the interests of
13 the subject are taken as a result of such possession. [Nothing in this
14 section shall preclude the release of such information, with the
15 subject's consent, to a health insurer or health maintenance organiza-
16 tion of any information reasonably required for purposes of claims
17 administration, provided, however, that further distribution within the
18 insurer or to other recipients shall require the subject's informed
19 consent in each case.]
20 (b) No person who lawfully possesses information derived from a genet-
21 ic test on a biological sample from an individual shall incorporate such
22 information into the records of a non-consenting individual who may be
23 genetically related to the tested individual; nor shall any inferences
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[] is old law to be omitted.
LBD02539-01-3
A. 7451 2
1 be drawn, used, or communicated regarding the possible genetic status of
2 the non-consenting individual.
3 (c) No findings or results of any genetic test shall be released to
4 any health insurer or health maintenance organization required for
5 purposes of claims administration. All health insurers or health mainte-
6 nance organizations shall accept records without the test result
7 confirming that the genetic test was performed and the records, findings
8 or results were received by the health care provider providing direct
9 care for the purposes of claims administration.
10 12. (a) No health insurer or life insurer shall require any records,
11 findings or results of any genetic test be provided to such insurer.
12 The health care provider and/or the policyholder shall provide any
13 necessary records to the insurance company to confirm such genetic test
14 was completed and the records, findings, or results of such test were
15 received by such provider.
16 (b) No health insurer or life insurer shall base their policies on
17 genetic test records, findings or results or being provided access to
18 genetic test records, findings or results.
19 (c) No health insurer or life insurer shall take adverse action
20 against a policyholder or potential policyholder for not having access
21 to the records, findings or results of a genetic test.
22 § 2. This act shall take effect on the ninetieth day after it shall
23 have become a law and shall apply to policies and contracts issued,
24 renewed, modified, altered, or amended on or after such date.
