Vieques congenital conditions registry: what it collects and how it protects you

It is the epidemiological registry of congenital conditions among Vieques children. The law itself orders that it be interpreted liberally in everything that ensures the efficient accumulation of scientific-medical data on congenital conditions in Vieques infants. It is attached to the Department of Health, which assigns the necessary personnel and resources; the Department may delegate some of its duties to other public agencies or instrumentalities better suited, but retains at all times the primary responsibility for administering the Registry.

Vieques infants with congenital conditions, understood as mental or physical deficiencies, functional or structural, in a human embryo, fetus or infant no older than 5 years, resulting from one or more genetic or environmental causes. Medical facilities and health professionals certified in Puerto Rico are those bound to supply records when the Department requires them.

• That it be a Vieques infant diagnosed with a congenital condition, or at risk of developing one.Verified against the official source
• For a third party to access the information: reliably demonstrating to the Department a valid scientific interest in an epidemiological, demographic or medical study.Verified against the official source

• The infant’s medical records — and the mother’s — which the Department may require from the medical facility or health professional with twenty (20) days’ notice.
• For third-party access: personal data, the organization or entity they work for, a preliminary research plan and the specific purpose of the request, plus a written confidentiality commitment.

1. 1

   Step 1: Know which condition enters the registry

   The law defines a congenital condition in infants as a mental or physical deficiency, functional or structural in nature, in a human embryo, fetus or infant no older than 5 years, resulting from one or more genetic or environmental causes. The definition covers both the genetic and the environmental, and that second element is central to the registry’s purpose.

2. 2

   Step 2: Understand how your record reaches the registry

   The Department of Health or the entity it designates may require, with twenty (20) days’ notice, from every medical facility and every health professional certified in Puerto Rico, the medical records of Vieques infants diagnosed with congenital conditions, or at risk of developing them; the medical records of those infants’ mothers may also be required. The facility, professional or employee who discloses the required information shall not be criminally or civilly liable for doing so — unless they act with gross negligence or maliciously.

3. 3

   Step 3: Know the shield: it is not a public document

   Three rules protect the information. Access is restricted to officials authorized by the Department. The Registry’s information shall not be considered a public document and carries the restrictions that entails. And the most important for a family: the registry’s information may not be used to restrict health coverage or the provision of health services. In addition, everyone who gains access — official or private citizen — must commit in writing to confine themselves to the authorized use and maintain confidentiality, a commitment that survives even when their functions cease or the purpose for which it was requested is fulfilled.

4. 4

   Step 4: Know when it can be shared

   The Department may supply registry information in four circumstances: for strictly statistical purposes, provided the identification of any person is avoided; to medical personnel, public or private, to the extent necessary to protect the registered infant’s life or health; if the person with legal custody or parental authority over the infant gives informed consent to disclosure; and to medical personnel, state agencies and public officials performing the duties the law provides.

5. 5

   Step 5: Misuse is a crime

   Any individual or entity that uses the Registry’s information contrary to what this Act orders shall be guilty of a misdemeanor and, if convicted, shall be punished with imprisonment not exceeding six (6) months or a fine not exceeding five hundred (500) dollars, or both at the Court’s discretion. The law further clarifies that those penalties also apply to whoever improperly performs the information destructions it orders.

6. 6

   Step 6: Know your child’s data is destroyed at age 12

   The Registry shall last thirty (30) years; at the end of that time, the particularized information on the infants’ identity shall be destroyed and only statistical data kept, and the Registry shall become a public document. But in addition, within that period periodic destructions shall occur: each time one of the registered infants reaches twelve (12) years of age, the information concerning that infant shall be destroyed, keeping only their general statistical data making no mention of the child’s identity. Both processes are the Department’s responsibility.

The Department of Health administers the Registry and retains primary responsibility even when delegating duties. The Secretary of Health must constitute an Advisory Committee to assist, composed of experts in epidemiology, public health, computer science, statistics, hospital administration, pediatrics and other contributing disciplines — and, alongside them, two public-interest representatives residing in Vieques and two parents of Vieques infants with congenital conditions; the Vieques Commissioner is also part of the Committee. At the close of each year of operations, the Department issues an exhaustive report to the Legislature with the statistical picture of incidence and patterns, the administrative measures in force or planned to promptly address the registered conditions, and research on cause, prevention and treatment.

• Believing the registry provides treatment or benefits: it is an epidemiological surveillance instrument.
• Fearing the information will affect your health plan: the law expressly forbids using it to restrict coverage or the provision of health services.
• Thinking anyone can consult it: the information is not considered a public document and access is restricted to authorized officials.
• Assuming the data stays forever: each infant’s identifiable information is destroyed when they turn twelve (12).
• Believing the medical facility risks liability by handing over the record: the law exempts it, except for gross negligence or malicious conduct.
• Forgetting that the parent’s or guardian’s consent is one of the routes by which the information may indeed be disclosed.

These are the government pages this guide is based on.

• Departamento de Salud de Puerto Rico

  Salud

  bvirtualogp.pr.gov