Pennsylvania HB 1179: An Act providing for privacy, transparency and compensation regarding the disclosure of information collected by genetic material testing entities.

Bill Text

PRINTER'S NO. 1316
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE BILL
No. 1179
Session of
2025
INTRODUCED BY KINKEAD, MUNROE, ISAACSON, MERSKI, MADDEN, HILL-
EVANS, RABB, HOWARD, PIELLI, HANBIDGE, SANCHEZ, SHUSTERMAN,
CIRESI, CEPEDA-FREYTIZ, RIVERA, CERRATO, GREEN, WARREN AND
SAMUELSON, APRIL 9, 2025
REFERRED TO COMMITTEE ON CONSUMER PROTECTION, TECHNOLOGY AND
UTILITIES, APRIL 9, 2025
AN ACT
Providing for privacy, transparency and compensation regarding
the disclosure of information collected by genetic material
testing entities.
The General Assembly of the Commonwealth of Pennsylvania
hereby enacts as follows:
Section 1. Short title.
This act shall be known and may be cited as the Genetic
Materials Privacy and Compensation Act.
Section 2. Definitions.
The following words and phrases when used in this act shall
have the meanings given to them in this section unless the
context clearly indicates otherwise:
"Genetic material." As follows:
(1) Deoxyribonucleic acid, including mitochondrial DNA,
complementary DNA and DNA derived from ribonucleic acid.
(2) The term includes a gene, chromosome or alteration
of a gene or chromosome that may be tested to determine the
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existence or risk of a disease, disorder, trait, propensity,
syndrome or information identifying an individual or a blood
relative.
(3) The term does not include family history or a
genetically transmitted characteristic whose existence or
identity is determined through means other than a genetic
test.
"Genetic material collection." Information collected, or
planned to be collected, by a genetic material testing entity
about the content accessed, personal identifiers, reports or
knowledge derived from testing and any other reports or
statistics combined with the information or data.
"Genetic material testing." As follows:
(1) DNA or genetic typing and testing to determine the
presence or absence of genetic characteristics in an
individual.
(2) The term includes a test of nucleic acids or
chromosomes in order to diagnose or identify a genetic
characteristic.
(3) The term does not include:
(i) A routine physical measurement.
(ii) A test for drugs, alcohol, cholesterol or human
immunodeficiency virus.
(iii) A chemical, blood or urine analysis.
(iv) Any other diagnostic test that is widely
accepted and in use in clinical practice.
"Genetic material testing entity." An entity collecting,
testing or otherwise analyzing the genetic material of
individuals, including:
(1) A medical facility.
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(2) An entity that provides genealogy services.
(3) A law enforcement agency.
"Prominently disclose." As follows:
(1) To communicate in a manner that is difficult to miss
and easily understandable by ordinary individuals, including
the following:
(i) A visual disclosure that, by its size, contrast,
location, length, appearance and other characteristics,
stands out from accompanying text or other visual
elements so that it is easily noticed, read and
understood.
(ii) An audible disclosure, including by telephone
or streaming video, that is delivered in a volume, speed
and cadence sufficient for ordinary individuals to easily
hear and understand.
(iii) An interactive electronic medium, such as in
connection with an update to device firmware, the
disclosure of which is unavoidable.
(iv) A disclosure that uses diction and syntax
understandable to ordinary individuals and appears in
each language in which the triggering representation
appears.
(v) A disclosure that complies with the requirements
in each medium through which it is received, including
all electronic devices and face-to-face communications.
(vi) A disclosure that is not contradicted,
mitigated by or inconsistent with anything else in the
communication.
(2) When the communication targets a specific audience,
such as children, the elderly or the terminally ill, the term
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"ordinary individuals" includes reasonable members of that
group.
"Third party." An entity that gathers or otherwise has
access to an individual's genetic material whether obtained for
the entity's purposes or accessed from another entity.
Section 3. Disclosure requirements.
(a) Prohibition.--In addition to other requirements imposed
by law, a genetic material testing entity, directly or through a
corporation, subsidiary, division, website or other device or
affiliate, may not misrepresent, expressly or by implication:
(1) The extent to which data is collected, used or
maintained or methods for protecting the privacy,
confidentiality or security of genetic material.
(2) The purpose of the collection, use or disclosure of
genetic material.
(b) Notice and consent.--
(1) A genetic material testing entity or third party,
directly or through a corporation, subsidiary, division,
website or other device or af