What's happening
This bill requires health care practitioners to provide information and resources to pregnant women receiving a positive prenatal trisomy diagnosis.
Why it matters
Ensures that women who receive a prenatal diagnosis of trisomy 13, 18, or 21 get comprehensive, up-to-date, and medically reviewed information. not just about the diagnosis, but about expected outcomes, life expectancy, and treatment options, which can support better informed decision-making.
Requires health care practitioners to provide resources for emotional and community support. by giving contact information for nonprofit organizations, potentially helping families connect with networks that offer guidance, advocacy, and shared experiences.
Mandates that the state health department curate and disseminate these resources and ensure accessibility. including culturally and linguistically appropriate materials—so information is not only accurate but also reaches families of diverse backgrounds and languages.
Allows trisomy-related organizations to request their materials be included in official state resources. , which could broaden the range and depth of support information available to expectant parents, reflecting the latest research and lived experience.
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Who cares
Headline styles
Inform Parents of Trisomy Diagnosis
Plain English, a few words. Used as the page title.
Sponsors
No co-sponsors yet.
History
- Referred to health
- Referred to health
Companion bill
The same bill in the other chamber. A bill becomes law when one version passes both houses and the governor signs it, so either number can carry it.
Inform Parents on Trisomy Diagnoses
In Assembly Committee · Health · Sponsor Alicia Hyndman
Full text
2 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
STATE OF NEW YORK
663
2019-2020 Regular Sessions
IN SENATE (Prefiled)
January 9, 2019
Introduced by Sen. BOYLE -- read twice and ordered printed, and when printed to be committed to the Committee on Health
AN ACT to amend the public health law, in relation to prenatal trisomy diagnosis awareness
The People of the State of New York, represented in Senate and Assembly, do enact as follows:
Section 1. The public health law is amended by adding a new section 2533 to read as follows:
§ 2533. Prenatal trisomy diagnosis awareness. 1. For purposes of this section, the following terms shall have the following meanings:
(a) "Health care practitioner" means a medical professional that provides prenatal or postnatal care and administers or requests administration of a diagnostic or screening test to a pregnant woman that detects for trisomy conditions; and
(b) "Trisomy conditions" means trisomy 13, otherwise known as Patau syndrome; trisomy 18, otherwise known as Edwards syndrome; and trisomy 21, otherwise known as Down syndrome.
2. A health care practitioner who orders prenatal tests for a pregnant woman to screen for trisomy conditions shall provide the following information to the pregnant woman if the test reveals a positive result for any of the trisomy conditions:
(a) Up-to-date and evidence-based information about the trisomy conditions that has been reviewed by medical experts and national trisomy organizations. The information must be provided in a written or an alternative format and must include the following:
i. expected physical, developmental, educational, and psychosocial outcomes;
ii. life expectancy;
iii. the clinical course description;
iv. expected intellectual and functional development; and
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD04555-01-9
S. 663 2
v. treatment options available for the particular syndrome for which the test was positive.
(b) Contact information for nonprofit organizations that provide information and support services for trisomy conditions.
3. (a) The commissioner shall provide written information to health care practitioners necessary to implement subdivision two of this section.
(b) Additionally, the commissioner shall post such information on the department's website.
(c) The commissioner shall follow existing department practice to ensure that the information is culturally and linguistically appropriate for all recipients.
(d) Any local or national organization that provides education or services related to trisomy conditions, may request that the commissioner include the organization's informational material and contact information on the department's website. Once a request is made, the commissioner may add the information to the website.
§ 2. This act shall take effect on the ninetieth day after it shall have become a law. Effective immediately, the addition, amendment and/or repeal of any rule or regulation necessary for the implementation of this act on its effective date are authorized to be made and completed on or before such effective date.
Reflowed for reading: line numbers and page breaks removed. Cite the official text.
Sponsor's memo
Title of bill
An act to amend the public health law, in relation to prenatal trisomy diagnosis awareness
Purpose or general idea of bill
Requires health care practitioners who order testing to screen for trisomy conditions such as Down Syndrome to provide up-to-date and evidence based information about the diagnosed condition.
Summary of specific provisions
Section 1. Adds a new section 2532 to the public health law. Section
2532
1. Definitions.
2. Requirements for information to be provided by health care practi- tioners to patients with a diagnosed trisomy condition. The information must have been reviewed by medical experts and national trisomy organ- izations, and must be provided in a written or an alternative format and must include, among other things, expected physical, developmental, educational, and psychosocial outcomes, life expectancy, expected intel- lectual and functional development, treatment options available for the particular syndrome for which the test was positive, and contact infor- mation for nonprofit organizations that provide information and support services for trisomy conditions.
3. Requirements for the commissioner to provide information to health care practitioners.
Section 2. Effective date.
Justification
Surveys have shown that 99% of practitioners offer prenatal testing for trisomy conditions such as Down Syndrome, but only 29% provide educa- tional materials to their patients. Prenatal testing is not only about providing information about a positive or negative result of a test, but also encompasses information about the tested-for condition.
The purpose of this legislation is to ensure that expectant and new parents receive accurate, up-to-date information on the nature of the testing that is conducted and on the conditions that are detected. Legislation is needed because medical professionals too often do not educate their patients about trisomy conditions or refer them to support organizations after a diagnosis.
Expectant mothers accepting prenatal testing are seeking information and value having information that they can refer to at home, outside of the physician's office, after receiving a diagnosis.
Prior legislative history
2017-18 Referred to Health.
Fiscal implications
To be determined.
Effective date
This act shall take effect on the ninetieth day after it shall have become a law.
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.