Genetic information discrimination: a felony, and treble damages

It is a civil rights law with two halves: an employment half and an insurance half. The employment half prohibits using genetic information to decide about employment and further prohibits obtaining it. The insurance half prohibits using it to decide on coverage, eligibility or premium. A broad definition joins the two halves: the law defines **genetic information** so as to include not only your own but **that of your family members and the manifestation of a disease or health disorder in one of them**, as well as information obtained as a result of requesting or receiving genetic services or participating in a clinical research study that includes genetic services. And it expressly excludes **information about the person’s sex or age**.

Anyone. The Article 1 public policy reaches **every natural or legal person, public or private, residing in or operating under the jurisdiction of the Commonwealth of Puerto Rico**, and the employment prohibition expressly names government agencies, public corporations, municipalities and instrumentalities, private employers and unions. The law defines "employee" broadly: any laborer, day worker, artisan, worker, clerk, retail employee and every person employed for wages, salary, daily pay or other compensation in any occupation, establishment, business or industry. No prior procedure is needed to be protected.

• Having been subject to an employment decision, or a coverage, eligibility or premium decision by a health plan, made on the basis of genetic information as the law defines it.Verified against the official source
• For the damages action, observing the term: one (1) year counted from the date the person discriminated against — or their guardian, heir or successor — learns of the discrimination.Verified against the official source

• Whatever documents the decision and its basis: the letter or communication from the employer or insurer, the genetic test request if there was one, and the coverage denial. The law requires genetic information to be kept in separate files treated as confidential medical records, so that file exists by legal mandate.

1. 1

   Step 1: What "genetic information" means here

   The Article 5 definition is broader than people assume, so it is worth reading first. **Genetic information includes all of a person’s information obtained through genetic medical examinations or genetic services and that of their family members, the manifestation of a disease or health disorder in one of a person’s family members, as well as genetic information obtained as a result of requesting or receiving genetic services, or participation in a clinical research study including genetic services by a person or their family members.** And it closes: **the term genetic information excludes information about the person’s sex or age**. Put another way: that your mother had a disease is your genetic information for this law’s purposes. Article 2 adds the technical definitions: **genetic tests** are analyses of DNA, RNA, chromosomes, proteins and metabolites detecting genotypes, mutations or chromosomal changes — excluding protein or metabolite analyses that do not detect those; **genetic services** includes every genetic test and genetic counseling, including obtaining, interpreting or evaluating genetic information; and **genetic monitoring** is the periodic examination of employees to evaluate changes in their genetic material from exposure to toxic substances in the workplace.

2. 2

   Step 2: In employment: they may neither use it nor obtain it

   Article 2[bis] makes two distinct prohibitions. On **use**: using genetic information in employment decisions is prohibited, in government agencies, public corporations, municipalities and instrumentalities, private employers and unions, and it applies **to any aspect of employment, including hiring, pay, work assignments, promotions, dismissals, training, fringe benefits, bonuses or any other term or condition of employment**. On **obtaining**: **employers, both government and private, are prohibited from requiring their employees or job applicants to undergo genetic tests, or from acquiring, by purchase or otherwise, the employee’s or applicant’s genetic information**. The law gives the reason in a line worth citing: **an employer may not use genetic information to make an employment decision, since genetic information is not relevant to a person’s ability to work**. The same article further orders that recruitment, selection, promotion, fringe benefits, training or transfer be carried out **solely following the merit principle**, which the law defines by reference to Act 184-2004 — and OGP notes that subsection was substituted by subsection (35) of Act 8-2017. We reproduce the reference and the note; **we do not describe either of those two laws, which we did not read**.

3. 3

   Step 3: The three employment exceptions

   The prohibition is not absolute and the law marks its edges. **By way of exception, the use of genetic information is permitted for the sole purpose of evaluating reasonable accommodation requests where the disability claimed in the request is one reflected in the person’s genetic information.** Also permitted is **using genetic information to assist the employee in matters of their own health or wellbeing**; and **to monitor genetic material for the effects of toxic substances in the work area**, or where certain specific circumstances arise, which the law lists as two conditions: **(1) that the employee provide their informed consent in writing, and it must be conscious, free, voluntary, without coercion, violence or intimidation**, for the purpose of providing their genetic information; and **(2) that the monitoring be authorized under some federal or state provision**. The consent wording — conscious, free, voluntary, without coercion, violence or intimidation — is deliberately demanding.

4. 4

   Step 4: Where it must be kept and who may see it

   Article 3 imposes custody: **every employer, employment agency, union organization or management committee holding an employee’s genetic information shall keep such information in separate files treated as confidential medical records**. And it lists exhaustively when it may be disclosed: **(1)** when the employee themselves authorizes it in writing, expressly and consciously, because they are receiving some service or treatment; **(2)** to an occupational health researcher, if the research is conducted under the federal regulations in Title 45 of the Code of Federal Regulations; **(3)** in response to an order from a court of competent jurisdiction, provided **only the genetic information specified in the order** is disclosed and the **employee is informed** that it is being disclosed under that order; **(4)** to government personnel investigating a claim under this Act; **(5)** when requested under the health certifications to obtain family medical leave, under the federal Family Medical Leave Act, HIPAA and Puerto Rico’s Act 232-2000 on Health Certification; and **(6)** to a federal or state government health agency, solely to learn aspects relevant to determining any contagious disease or other condition affecting the person’s life and safety.

5. 5

   Step 5: In health insurance

   Article 4 is the half people miss because the law sounds like an employment statute. It says: **health plan groups and public or private insurers are prohibited from denying a person individual or group coverage based solely on genetic predisposition to develop a disease in the future**. And it continues: **health insurers may not require individuals to provide genetic information about themselves or their family group or any family member in order to be eligible for insurance coverage or for a given premium**; **they may not use genetic information for the purpose, direct or indirect, of making decisions about benefit and service coverage**; and **they may not request or require that a person or any family member take a given genetic test**. It closes with the Medicare case: in any Medicare supplemental health plan the information may not be used to deny coverage for a preexisting condition, as established in the federal **Genetic Information Nondiscrimination Act (GINA)**, which the law cites by name and which **we do not describe because we did not read it**.

6. 6

   Step 6: The consequences: a felony, one year, and treble

   Three consecutive articles do the work. Article 6: **any person, natural or legal, public or private, who discriminates under this Act’s provisions shall commit a felony and be punished with a fine of ten thousand (10,000.00) dollars for a first offense. On repeat, the fine shall be twenty thousand (20,000.00) dollars.** Article 7 opens the civil route: **any person discriminated against on the basis of genetic information may bring a damages action** against any natural or legal person who engages in the discrimination. Article 8 sets the term and who may sue: **when the person with standing to sue is unable to do so, for whatever reason, their guardian, heir or successor may bring that action**, and **this action shall have a prescriptive period of one (1) year counted from the date the person discriminated against, guardian, heir or successor learns of the discrimination**. Note the year runs not from when the discrimination occurred but from when it became known. And Article 9 closes with the figure: **the indemnity payable by the defendant in a damages case shall be a sum equal to triple the amount of the damages the act caused the person**.

Act 107-2013 designates no enforcing agency and creates no administrative procedure of its own: it opens a damages action in the courts and makes the discrimination a felony. Article 3 does mention, among the permitted disclosure scenarios, **government personnel investigating a claim under this Act**, which presupposes such investigations exist, but the law does not say which agency conducts them. We link the Department of Labor and the Office of the Insurance Commissioner because they are the general forums for the two halves the law regulates — employment and health insurance — and we want to be clear that **that assignment does not come from this law**. What we do not publish: forms, addresses, administrative deadlines or administrative fines, because this law creates none. That is why cost and processing time stay unverified. The only term the law does set is the one-year prescriptive period for the civil action.

• Accepting a genetic test as an employment requirement: the law prohibits requiring it of employees and applicants.
• Believing the law covers only your own information: the definition includes family members’ and the manifestation of a disease in one of them.
• Assuming sex or age count as genetic information: the law expressly excludes them.
• Giving verbal consent for genetic monitoring: the law requires informed written consent, conscious, free and voluntary, without coercion.
• Letting the year lapse: the action prescribes in one year, counted from when the discrimination became known, not from when it occurred.
• Accepting an insurer asking for your family’s genetic information to set your premium: Article 4 prohibits it.
• Not asking where the information is kept: the law requires separate files treated as confidential medical records.
• Accepting a broad disclosure under a court order: the law limits disclosure to the information specified in the order and requires informing you.

These are the government pages this guide is based on.

• Departamento del Trabajo y Recursos Humanos (DTRH)

  Departamento del Trabajo

  bvirtualogp.pr.gov

• Department of Labor and Human Resources (DTRH)

  DTRH

  www.trabajo.pr.gov

• Office of the Insurance Commissioner (OCS)

  OCS

  www.ocs.pr.gov