BILL NUMBER: S9834
SPONSOR: BAILEY
 
TITLE OF BILL:
An act to amend the general business law, the insurance law and the
public health law, in relation to collection of social security account
numbers for registration with the New York state donate life registry
 
PURPOSE OR GENERAL IDEA OF BILL:
To improve the accuracy, integrity, and reliability of registrations in
New York State by expressly authorizing and requiring the limited,
secure transmission of donor data by authorized insurers and related
entities to the New York State Donate Life Registry.
 
SUMMARY OF PROVISIONS:
The bill updates existing law to explicitly authorize the use of data
for organ and tissue donation registration purposes and clarifies data
facilitation frameworks within the Insurance Law. Specifically, the
bill:
*Amends section 399-ddd of the General Business Law to expressly recog-
nize organ donation as a permissible purpose for requesting and using a
Social Security number, consistent with the Public Health Law.
*Creates a new section of the Insurance Law authorizing insurers,
producers, and other authorized entities to request and collect an indi-
vidual's Social Security number upon an affirmative election to register
as an organ and tissue donor.
*Requires entities to transmit necessary registration information,
including Social Security numbers, to the Department of Health and/or
the entity operating the New York State Donate Life Registry solely for
the purposes of donor registration.
*Prohibits the use of Social Security numbers collected under this
authority for underwriting, rating, eligibility determinations, market-
ing, claims handling, or any purpose unrelated to donor registration.
 
JUSTIFICATION:
New York State has made significant progress in expanding opportunities
for individuals to register as organ and tissue donors through the
Department of Motor Vehicles, online platforms, and, more recently,
health insurance enrollment and renewal processes. As these enrollment
pathways have expanded, ensuring the integrity and accuracy of donor
records has become increasingly important.
The New York State Donate Life Registry relies on stable, unique identi-
fiers to ensure that an individual's affirmative decision to donate is
accurately captured, preserved, and honored at a critical moment. While
DMV-issued identifiers function effectively within motor vehicle trans-
actions, many insurers and health plans do not collect those identifiers
and instead rely on Social Security numbers as their primary unique
identifier. The absence of a shared identifier across enrollment chan-
nels increases the risk of duplicate records, incomplete donor profiles,
and administrative inefficiencies. This bill addresses that challenge
by providing clear statutory authority for the limited use of Social
Security numbers as a shared identifier for donor registration purposes
only. The bill does not create a new registry, expand eligibility, or
mandate donation. Rather, it ensures that when a New Yorker chooses to
register as a donor, that decision is accurately recorded and reliably
linked to a single, complete registry record.
Strong privacy and security protections are embedded throughout the
bill. Use of Social Security numbers is strictly limited to donor regis-
tration functions, secondary uses are expressly prohibited, and all data
handling remains subject to existing state and federal privacy and secu-
rity requirements. Individuals receive notice that providing a Social
Security number is optional and that it will be used solely for donor
registration purposes.
By improving data quality and reducing duplication, the bill supports
more accurate donor statistics, strengthens public trust in the regis-
tration process, and enhances the state's ability to honor lifesaving
donor decisions. These targeted, commonsense updates align with prior
legislative efforts to modernize organ donation registration while
preserving robust privacy safeguards.
 
PRIOR LEGISLATIVE HISTORY:
New.
 
FISCAL IMPLICATIONS:
None.
 
EFFECTIVE DATE:
This act shall take effect immediately.

Statutes affected:
S9834: 399-ddd general business law, 399-ddd(3) general business law, 3217-a insurance law, 4324 insurance law, 4408 public health law, 4408(9) public health law