CHAPTER 186
HB 1505-FN – FINAL VERSION
05Mar2008… 0729h
05/01/08 1481s
05/01/08 1645s
21May2008… 1857eba
2008 SESSION
08/05
HOUSE BILL 1505-FN
AN ACT establishing the New Hampshire birth conditions program.
SPONSORS: Rep. Daler, Hills 4; Rep. Matarazzo, Hills 20; Rep. Pilliod, Belk 5; Rep. French, Merr 5; Sen. Sgambati, Dist 4; Sen. Fuller Clark, Dist 24
COMMITTEE: Health, Human Services and Elderly Affairs
This bill establishes the New Hampshire birth conditions program.
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Explanation: Matter added to current law appears in bold italics.
Matter removed from current law appears [in brackets and struckthrough.]
Matter which is either (a) all new or (b) repealed and reenacted appears in regular type.
05Mar2008… 0729h
05/01/08 1481s
05/01/08 1645s
21May2008… 1857eba
08-2428
08/05
STATE OF NEW HAMPSHIRE
In the Year of Our Lord Two Thousand Eight
AN ACT establishing the New Hampshire birth conditions program.
Be it Enacted by the Senate and House of Representatives in General Court convened:
186:1 New Chapter; Birth Conditions Registry. Amend RSA by inserting after chapter 141-I the following new chapter:
CHAPTER 141-J
BIRTH CONDITIONS PROGRAM
141-J:1 Birth Conditions Program Authorized. The department of health and human services may establish and maintain a statewide, population-based public health surveillance program on birth conditions, to be known as the New Hampshire birth conditions program if established. The program shall:
I. Determine the prevalence and trends of birth conditions among New Hampshire residents.
II. Develop and assess prevention strategies relating to birth conditions.
III. Promote scientific collaboration through data analysis, investigations, and epidemiological studies on the public health impact of birth conditions and possible cause of birth conditions, including exposure to environmental or occupational hazards, maternal and stillborn fetal conditions, and illnesses or complications during pregnancy, labor, or delivery.
141-J:2 Definitions. In this chapter:
I. “Birth condition” means one or more of the birth conditions listed in the “Guidelines for Conducting Birth Defects Surveillance” established by the National Birth Defects Prevention Network.
II. “Commissioner” means the commissioner of the department of health and human services.
III. “Department” means the department of health and human services.
IV. “Health information” means vital records, hospital discharge data, parental, stillborn fetal, pediatric, or infant medical records, hospital or clinic records, results of genetic tests relating to birth conditions in infants and children, or fetal death reports indicating the birth conditions only but not the tests themselves or any other information therefrom, records of induced termination of pregnancies as to which a diagnosis of a birth condition has been made provided that such information does not include any individually identifiable health information or information that identifies the physician or other medical provider, laboratory reports, and infant, pediatric, or stillborn fetal autopsy reports.
V. “Individually identifiable health information” means health information that explicitly or by implication identifies the individual who is the subject of the information including names, street addresses, birth dates, death dates, admission or discharge dates, telephone numbers, facsimile numbers, electronic mail addresses, social security numbers, medical record numbers, health plan beneficiary numbers, account numbers, certificate/license numbers, biometric identifiers, including finger and voice prints, genetic tests, facial photographic or other images, any other unique identifying number, characteristic, or code.
141-J:3 Program Access to Health Information.
I. Health care providers, health care facilities, clinics, laboratories, medical records departments, and state offices, agencies, and departments shall allow the program to have access to individually identifiable health information relating to the occurrence of birth conditions in children, infants, or stillborn fetuses. The program may acquire the same information relating to New Hampshire residents from health care facilities, birth conditions surveillance programs, and other sources in other states. The program shall not provide individually identifiable health information relating to New Hampshire residents to any similar program operated by any other state or the federal government.
II. Except as otherwise provided in this chapter, no health care provider, health care facility, clinic, laboratory, medical records department, or state office, agency, or department shall be held liable in any action for civil damages for providing the department or the program with access to individually identifiable health information authorized by paragraph I.
141-J:4 Program Ability to Share Data. Program staff and authorized department employees, agents, and contractors may use or disclose individually identifiable health information solely for the purposes specified in RSA 141-J:1. Such uses or disclosures shall be limited to the minimum amount of individually identifiable health information necessary to further such purposes.
141-J:5 Election Not to Participate in the Program.
I. An individual who is the subject of individually identifiable health information may elect not to participate in the program. If the individual is a minor or is legally incompetent, the individual’s parent or legal guardian may so elect on the individual’s behalf.
II. The program shall notify each individual with a confirmed birth condition diagnosis whose individually identifiable health information it proposes to include in the program of the election prior to obtaining any individually identifiable health information relating to the individual, other than name and address and diagnosis. The program shall not obtain any individually identifiable health information for any individual who does not have a confirmed birth condition diagnosis and shall retain the name and address only of any such individual for a period not to exceed 2 years.
III. The notices required by paragraph II shall be in writing, on a form developed and revised from time to time by the commissioner. At a minimum, the notice shall:
(a) Be written in clear, plain language.
(b) Contain the following:
(1) A statement explaining the nature and purpose of the program.
(2) A statement of the election in paragraph I or the absence of a statement of election in paragraph V, and a statement of the election in RSA 141-J:6, I.
(3) Contact information for the program.
(4) A place for the individual to sign and date.
IV. If an individual elects not to participate in the program, the program shall acknowledge in writing that it has received and will honor the election.
V. If the program has notified an individual pursuant to paragraph II or III, and within 60 days of providing such notice has not received the individual’s election not to participate in the program, the program may obtain access to, or retain, as the case may be, individually identifiable health information relating to the individual.
VI. The program shall not acquire, retain, use, or disclose individually identifiable health information, including birth condition, with respect to those individuals who have elected not to participate in the program under paragraph I or RSA 141-J:6, I. The program shall retain a list of those individuals who have elected not to participate in the program and the dates of such elections but shall not disclose this information to any other entity.
141-J:6 Rights of Individuals. An individual with respect to whom the program retains individually identifiable health information may:
I. Elect at any time not to participate in the program. Upon such election, the program shall remove any individually identifiable health information relating to the individual.
II. Review any individually identifiable health information in program records relating to the individual.
III. Upon payment of any reasonable costs involved, obtain a copy of any individually identifiable health information in program records relating to the individual.
IV. Request amendments or corrections to the individual’s individually identifiable health information in program records.
V. Prohibit the release of individually identifiable health information in program records relating to the individual.
VI. Review and, upon payment of any reasonable costs involved, obtain a copy of the list of persons given access to individually identifiable health information relating to the individual.
141-J:7 Program Records Not Public Records. Any individually identifiable health information acquired, used, disclosed, or retained by the program shall not constitute a public record. The names and addresses of individuals who have elected not to participate in the program shall not be a public record. No individually identifiable health information retained by the program shall be discoverable or compelled to be produced pursuant to subpoena or compelled testimony in any legal proceeding without the written authorization of the person about whom the information relates. Analyses and compilations of data that do not disclose individually identifiable health information shall be available to the public under RSA 91-A.
141-J:8 Privacy and Confidentiality Protections.
I. Any person allowed access to individually identifiable health information in program records shall sign a confidentiality agreement, in a form specified by the department, requiring adherence to privacy and security protections equivalent to or greater than the protections provided in this chapter.
II. The department shall maintain a list of any persons other than program staff given access to individually identifiable health information. The list shall include:
(a) The name of the person authorizing access.
(b) The name, title, and organizational affiliation of each person given access.
(c) The date of access.
(d) The specific purpose for which the information was used.
III. Individually identifiable health information in the records of the program may be retained for 18 years or, if the information relates to a minor, until the individual reaches the age of 18. Thereafter, the program may use and retain the information only in a form where an individual’s identity cannot be discerned.
141-J:9 Rulemaking. The commissioner of the department of health and human services may adopt rules under RSA 541-A concerning the following:
I. The form and manner through which information shall be made available to and by the program under RSA 141-J:3 and 4.
II. The election procedure pursuant to RSA 141-J:5.
III. The rights of individuals under RSA 141-J:6.
IV. The privacy and confidentiality protections under RSA 141-J:8.
141-J:10 Penalties.
I. Any person who violates the provisions of this chapter is guilty of a class B misdemeanor.
II. An individual harmed by a person violating this chapter may bring a civil action against the person and, if successful, shall be awarded the greater of actual damages or liquidated damages of $2,500 for each violation, reasonable attorneys’ fees and other litigation costs reasonably incurred, and such other equitable relief as the court determines to be appropriate.
141-J:11 Advisory Panel. If the department establishes or maintains the New Hampshire birth conditions program, the department shall establish an advisory panel for the program. The panel shall provide technical guidance regarding the operation of the program and such assistance as needed to carry out the program’s goals. The panel shall include representatives from:
I. Health care services.
II. Persons or agencies that may use program data in discharging duties or undertaking research.
III. The New Hampshire March of Dimes and other organizations concerned with birth conditions.
IV. Parents of children with birth conditions and adults with birth conditions.
186:2 Conditions of Genetic Testing. Amend RSA 141-H:2, III to read as follows:
III. Except as provided in paragraph II, or authorized by RSA 141-J, no person shall disclose to any other person that an individual has undergone genetic testing, and no person shall disclose the results of such testing to any other person, without the prior written and informed consent of the individual, the parent, guardian, or custodian if the individual is a minor under the age of 18, or the legal guardian or conservator if the individual is an incompetent person. Discussion and disclosure of genetic testing for a patient, requested of a physician by a patient, by appropriate professionals within a physician’s medical practice or hospital shall not be a violation of this chapter.
186:3 Effective Date. This act shall take effect upon its passage.
Approved: June 11, 2008
Effective Date: June 11, 2008