Bill Text: NY A02881 | 2019-2020 | General Assembly | Amended
Bill Title: Authorizes the department of health to establish a program for familial dysautonomia, Canavan's and Tay-Sachs disease screening and counseling and to provide grants and to enter into contracts with public and non-profit private entities to assist in such program; and provides that participation in such program shall be voluntary and all information shall be confidential.
Spectrum: Partisan Bill (Democrat 5-0)
Status: (Introduced - Dead) 2020-05-04 - print number 2881a [A02881 Detail]
Download: New_York-2019-A02881-Amended.html
STATE OF NEW YORK ________________________________________________________________________ 2881--A 2019-2020 Regular Sessions IN ASSEMBLY January 28, 2019 ___________ Introduced by M. of A. DINOWITZ, JAFFEE, L. ROSENTHAL, HEVESI, WEPRIN -- read once and referred to the Committee on Health -- recommitted to the Committee on Health in accordance with Assembly Rule 3, sec. 2 -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee AN ACT to amend the public health law, in relation to the establishment of a program for familial dysautonomia, Canavan's disease and Tay- Sachs disease screening and counseling The People of the State of New York, represented in Senate and Assem- bly, do enact as follows: 1 Section 1. The public health law is amended by adding a new section 2 206-c to read as follows: 3 § 206-c. 1. Program for familial dysautonomia, Canavan's disease and 4 Tay-Sachs disease screening and counseling. The commissioner shall 5 establish within the department, within amounts appropriated therefor, a 6 program for familial dysautonomia, Canavan's disease and Tay-Sachs 7 disease screening and counseling for the purposes of establishing volun- 8 tary familial dysautonomia, Canavan's disease and Tay-Sachs disease 9 screening and counseling programs, primarily through other existing 10 health programs. 11 2. The commissioner may make grants to and enter into contracts with 12 public and nonprofit private entities for the establishment and opera- 13 tion of programs under this section. The commissioner shall promulgate 14 regulations pursuant to this section. In making grants authorized under 15 this section the commissioner shall give priority to programs that: 16 (a) provide services first to blood relatives of known familial 17 dysautonomia, Canavan's disease or Tay-Sachs disease victims, and second 18 to high-risk population groups in which familial dysautonomia, Canavan's 19 disease and Tay-Sachs disease occur with greatest frequency and 20 especially to those persons in such groups who are entering their child- 21 bearing years; and EXPLANATION--Matter in italics (underscored) is new; matter in brackets [] is old law to be omitted. LBD00745-02-0A. 2881--A 2 1 (b) operate in areas which the commissioner determines to have the 2 greatest number of persons in need of the screening and counseling 3 services provided under such programs. 4 3. The participation by any individual in any program under this 5 section shall be wholly voluntary and shall not be a prerequisite to 6 eligibility for, or receipt of, any other service or assistance from, or 7 to participation in, any other program. All test results, medical 8 records and any other information regarding familial dysautonomia, 9 Canavan's disease and Tay-Sachs disease screening or counseling acquired 10 or made by a public or private entity or an individual under this 11 section shall be kept confidential and shall not be admissible as 12 evidence in an action or proceeding in any court or before any other 13 tribunal, board, agency or person; provided, however, that the 14 provisions of this subdivision shall not apply to: 15 (a) such information as the patient, or his or her guardian, consents 16 to be released; or 17 (b) statistical data compiled without reference to the identity of any 18 such patient; or 19 (c) such information as is released by written order of a court of 20 competent jurisdiction, issued by such court after receipt of an appli- 21 cation on appropriate notice and an opportunity for all relevant parties 22 to be heard, showing good cause for the following reasons: 23 (i) other ways of obtaining the information are not available or would 24 be ineffective; or 25 (ii) there is a reasonable likelihood that the records will disclose 26 information of substantial value in a civil and/or criminal proceeding. 27 In any application brought under this paragraph, unless the court 28 orders all papers filed under seal, the subject of the record shall be 29 identified only by fictitious name, and the application and responding 30 papers shall not contain or otherwise disclose the subject's identity or 31 other confidential information. 32 4. On or before July first, two thousand twenty-two, the commissioner 33 shall issue a report on the administration of this program to the gover- 34 nor, the temporary president of the senate, the minority leader of the 35 senate, the speaker of the assembly, and the minority leader of the 36 assembly. Such report shall contain such recommendations for additional 37 legislation as the commissioner deems necessary. 38 § 2. Subdivision 1 of section 207 of the public health law is amended 39 by adding a new paragraph (p) to read as follows: 40 (p) Familial dysautonomia, Canavan's disease and Tay-Sachs disease 41 education, screening, and counseling. 42 § 3. This act shall take effect on the one hundred eightieth day after 43 it shall have become a law. Effective immediately, the addition, amend- 44 ment and/or repeal of any rule or regulation necessary for the implemen- 45 tation of this act on its effective date are authorized and directed to 46 be made and completed on or before such effective date.