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.
STATE OF NEW YORK
________________________________________________________________________
190
2013-2014 Regular Sessions
IN SENATE(Prefiled)
January 9, 2013
___________
Introduced by Sen. SQUADRON -- 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 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 article
2 27-DDD to read as follows:
3 ARTICLE 27-DDD
4 PROGRAM FOR FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE
5 AND TAY-SACHS DISEASE SCREENING AND COUNSELING
6 Section 2770. Legislative findings and declaration of purpose.
7 2771. Program for familial dysautonomia, Canavan's disease and
8 Tay-Sachs disease screening and counseling.
9 2772. Commissioner; functions, powers and duties.
10 2773. Costs.
11 2774. Voluntary participation.
12 2774-a. Application; administration as to grants and contracts.
13 2774-b. Confidentiality of information.
14 2774-c. Reports.
15 § 2770. Legislative findings and declaration of purpose. 1. The
16 legislature hereby finds and declares:
17 (a) that familial dysautonomia, Canavan's disease and Tay-Sachs
18 disease are debilitating, inheritable diseases that have affected many
19 citizens of the state;
20 (b) that familial dysautonomia, Canavan's disease and Tay-Sachs
21 disease are deadly and tragic burdens which are likely to strike one-
22 fourth of the children born to parents both of whom are familial dysau-
23 tonomia, Canavan's disease and Tay-Sachs disease carriers;
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[] is old law to be omitted.
LBD00266-01-3
S. 190 2
1 (c) that efforts with respect to familial dysautonomia, Canavan's
2 disease and Tay-Sachs disease must be directed toward the education,
3 screening, and counseling of carriers of familial dysautonomia,
4 Canavan's disease and Tay-Sachs disease;
5 (d) that simple and inexpensive screening tests have been devised
6 which identify those who have the diseases or are familial dysautonomia,
7 Canavan's disease and Tay-Sachs disease carriers;
8 (e) that programs with respect to familial dysautonomia, Canavan's
9 disease and Tay-Sachs disease must be based entirely upon the voluntary
10 cooperation of the individuals involved;
11 (f) that the application of methods of screening and counseling with
12 respect to familial dysautonomia, Canavan's disease and Tay-Sachs
13 disease deserve the highest priority; and
14 (g) that the establishment of familial dysautonomia, Canavan's disease
15 and Tay-Sachs disease education, screening, and counseling programs will
16 be cost beneficial to the citizens of the state.
17 2. In order to preserve and protect the public health and welfare, the
18 legislature hereby declares as its purpose the establishment of a
19 program for familial dysautonomia, Canavan's disease and Tay-Sachs
20 disease screening and counseling.
21 § 2771. Program for familial dysautonomia, Canavan's disease and Tay-
22 Sachs disease screening and counseling. The commissioner shall estab-
23 lish within the department a program for familial dysautonomia,
24 Canavan's disease and Tay-Sachs disease screening and counseling for the
25 purposes of:
26 1. the establishment and operation of voluntary familial dysautonomia,
27 Canavan's disease and Tay-Sachs disease screening and counseling
28 programs, primarily through other existing health programs; and
29 2. the development of information and educational materials relating
30 to familial dysautonomia, Canavan's disease and Tay-Sachs disease, and
31 the dissemination of such information and materials to persons providing
32 health care and to the public generally.
33 § 2772. Commissioner; functions, powers and duties. In carrying out
34 the provisions of this article, the commissioner shall have the follow-
35 ing functions, powers and duties:
36 1. in his or her discretion, to make grants to and enter into
37 contracts with, public and nonprofit private entities for projects for
38 the establishment and operation of voluntary familial dysautonomia,
39 Canavan's disease and Tay-Sachs disease screening and counseling
40 programs;
41 2. to carry out a program to develop information and educational mate-
42 rials relating to familial dysautonomia, Canavan's disease and Tay-Sachs
43 disease and to disseminate such information and materials to persons
44 providing health care and to the public generally;
45 3. to make grants to public and nonprofit private entities and to
46 enter into contracts with public and private entities and individuals
47 for the purpose of effectuating the duty prescribed by subdivision two
48 of this section;
49 4. to adopt, promulgate, amend and rescind suitable rules and regu-
50 lations to carry out the provisions and purposes of this article; and
51 5. to exercise and perform such other functions, powers and duties as
52 are contained in this article or as may from time to time be conferred
53 or imposed by law.
54 § 2773. Costs. Costs incurred by the commissioner in making payments
55 pursuant to grants and contracts authorized by subdivisions one and
56 three of section twenty-seven hundred seventy-two of this article shall
S. 190 3
1 be payable, after submission of a voucher certified by the commissioner,
2 upon audit and warrant of the comptroller from moneys made available for
3 such purpose by appropriation.
4 § 2774. Voluntary participation. The participation by any individual
5 in any program or portion thereof established under this article shall
6 be wholly voluntary and shall not be a prerequisite to eligibility for
7 or receipt of any other service or assistance from, or to participation
8 in, any other program.
9 § 2774-a. Application; administration as to grants and contracts. 1.
10 A grant authorized by section twenty-seven hundred seventy-two of this
11 article may be made upon application to the commissioner at such time,
12 in such manner, upon such forms, containing and accompanied by such
13 information, as the commissioner shall deem necessary and, by regu-
14 lation, prescribe.
15 2. Notwithstanding the provisions of subdivision one of this section,
16 any application made pursuant to this section shall at least provide:
17 (a) that the programs and activities for which assistance under this
18 article is sought will be administered by or under the supervision of
19 the applicant;
20 (b) for strict confidentiality of all test results, medical records,
21 and other information regarding screening or counseling, except for (i)
22 such information as the patient (or his or her guardian) consents to be
23 released; or (ii) statistical data compiled without reference to the
24 identity of any such patient;
25 (c) for appropriate community representation in the development and
26 operation of any program funded by a grant under this article;
27 (d) in the case of an application for a grant authorized by subdivi-
28 sion one of section twenty-seven hundred seventy-two of this article,
29 assurances satisfactory to the commissioner that (i) the screening and
30 counseling services to be provided under the program for which the
31 application is made will be directed first to the blood relatives of
32 known familial dysautonomia, Canavan's disease or Tay-Sachs disease
33 victims; and second, to the high-risk population groups in which fami-
34 lial dysautonomia, Canavan's disease and Tay-Sachs disease occurs with
35 greatest frequency and especially to those persons in these groups who
36 are entering their childbearing years; and (ii) appropriate arrangements
37 have been made to provide genetic counseling to persons found to be
38 familial dysautonomia, Canavan's disease or Tay-Sachs carriers;
39 (e) for such fiscal control and fund accounting procedures as the
40 commissioner may deem necessary to assure proper disbursement of and
41 accounting for funds paid to the applicant pursuant to this article; and
42 (f) for making such reports in such form and containing such informa-
43 tion as the commissioner may, by regulation, reasonably require.
44 3. In making or entering into any grant or contract pursuant to this
45 article, the commissioner shall:
46 (a) take into account the number of persons to be served by the
47 program supported by such grant or contract and the extent to which
48 rapid and effective use will be made of funds under the grant or
49 contract; and
50 (b) give priority to programs operating in areas which the commission-
51 er determines to have the greatest number of persons in need of the
52 screening and counseling services provided under such programs.
53 § 2774-b. Confidentiality of information. All test results, medical
54 records and any other information regarding familial dysautonomia,
55 Canavan's disease and Tay-Sachs disease screening or counseling acquired
56 or made by a public or private entity or an individual under this arti-
S. 190 4
1 cle shall be kept confidential, and shall not be admissible as evidence
2 in an action or proceeding in any court or before any other tribunal,
3 board, agency or person; provided, however, that the provisions of this
4 section shall not apply to:
5 1. such information as the patient, or his or her guardian, consents
6 to be released; or
7 2. statistical data compiled without reference to the identity of any
8 such patient; or
9 3. such information as is released by written order of a court of
10 record, issued by such court after receipt of an application on appro-
11 priate notice and an opportunity for all relevant parties to be heard,
12 showing good cause for the following reasons:
13 (a) other ways of obtaining the information are not available or would
14 be ineffective; and
15 (b) there is a reasonable likelihood that the records will disclose
16 information of substantial value in a civil and/or criminal proceeding.
17 In any application brought under this subdivision, unless the court
18 orders all papers filed under seal, the subject of the record shall be
19 identified only by fictitious name, and the application and responding
20 papers shall not contain or otherwise disclose the subject's identity or
21 other confidential information.
22 § 2774-c. Reports. 1. The commissioner shall prepare and submit to the
23 governor and the legislature as soon as practicable after the enactment
24 of this article, but no later than one year following such enactment, a
25 comprehensive report on the administration of this article.
26 2. Such report shall contain such recommendations for additional
27 legislation as the commissioner deems necessary.
28 § 2. This act shall take effect on the one hundred eightieth day after
29 it shall have become a law, provided, however, that effective immediate-
30 ly, the addition, amendment and/or repeal of any rule or regulation
31 necessary for the implementation of this act on its effective date are
32 authorized and directed to be made and completed on or before such
33 effective date.
