HOUSE OF REPRESENTATIVES STAFF ANALYSIS
BILL #: CS/HB 833 Unlawful Use of DNA
SPONSOR(S): Judiciary Committee, Tomkow
TIED BILLS: IDEN./SIM. BILLS: SB 1140
REFERENCE ACTION ANALYST STAFF DIRECTOR or
BUDGET/POLICY CHIEF
1) Criminal Justice & Public Safety Subcommittee 16 Y, 0 N Frost Hall
2) Judiciary Committee 16 Y, 0 N, As CS Frost Kramer
SUMMARY ANALYSIS
Deoxyribonucleic acid (DNA) is hereditary material existing in the cells of all living organisms. A person’s DNA
may be collected from his or her biological material and may be used for many purposes, such as criminal
investigations, determining paternity, tracking ancestry, or genetic testing to diagnose a medical condition.
Since the advent of genetic testing, there have been concerns about the use of personal genetic information by
third parties. The current widespread availability of direct to consumer genetic tests has given rise to even
more questions and concerns regarding the appropriate use of genetic information. While an individual may
voluntarily submit to genetic testing in an effort to gain insights into his or her own genetic history, third parties
may seek to obtain this same information for other purposes. Although existing federal and state laws may
protect a person’s DNA from being misused by insurance providers or for discriminatory purposes, no current
law specifically protects a person’s DNA from being collected or analyzed without his or her consent.
CS/HB 833 creates the “Protecting DNA Privacy Act.” The bill changes the level of consent currently required
for a lawful analysis of a person’s DNA and disclosure of the results of such analysis by requiring his or her
express consent, which means authorization from a person or his or legal guardian or representative,
evidenced by an affirmative act demonstrating his or her intentional decision, after receiving a clear and
prominent disclosure regarding the specified purpose for the collection, use, retention, maintenance, or
disclosure of the DNA sample or analysis thereof. The bill also requires express consent for collecting,
retaining, or submitting for analysis another person’s DNA.
The bill creates new crimes with increased penalties prohibiting a person from willfully, and without express
consent:
Collecting or retaining another person’s DNA sample with intent to analyze such sample, as a first degree
misdemeanor.
Submitting another person’s DNA sample for analysis or conducting or procuring the conducting of such
analysis, as a third degree felony.
Disclosing another person’s DNA analysis results to a third party, as a third degree felony.
Selling or otherwise transferring another person’s DNA sample or analysis results to a third party, as a
second degree felony.
The bill defines the terms “DNA analysis” and “DNA sample” and specifies that each instance of unlawful
activity is a separate criminal offense. The bill clarifies current law by providing that “exclusive property” means
a person’s right to exercise control over his or her DNA sample or analysis with regard to the collection, use,
retention, maintenance, disclosure, or destruction of such sample or analysis.
Under the bill, a DNA sample, analysis, or analysis result is exempt from the required consent when used for
specified purposes such as criminal investigation, determining paternity, complying with a court order or with
federal law, and other specified healthcare purposes.
The bill may have an indeterminate positive impact on the number of prison beds by creating new felony
crimes relating to unlawful use of DNA.
This bill provides an effective date of October 1, 2021.
This document does not reflect the intent or official position of the bill sponsor or House of Representatives .
STORAGE NAME: h0833c.JDC
DATE: 3/24/2021
FULL ANALYSIS
I. SUBSTANTIVE ANALYSIS
A. EFFECT OF PROPOSED CHANGES:
Background
DNA
Deoxyribonucleic acid (DNA) is hereditary material that exists in the cells of all living organisms. A DNA
profile is created by testing the DNA in a person’s cells.1 Similar to fingerprints, a person’s DNA profile
is a unique identifier, except for identical twins, who have the exact same DNA profile. A DNA sample
may be collected from any biological material, such as hair, teeth, bones, skin cells, blood, semen,
saliva, urine, feces, and other bodily substances.2 A DNA sample may be used for many purposes,
such as:
Criminal investigations;
Determining a child’s paternity;
Tracking a person’s ancestry;
Developing vaccines, human growth hormones, or insulin; or
Genetic testing to diagnose a medical condition or determine predisposition to a particular
medical condition.3
Genetic Testing
Since the advent of genetic testing, there have been concerns about the use of personal genetic
information by third parties. The availability and use of genetic tests has increased dramatically in
recent years. As of August 2017, there were approximately 75,000 genetic testing products on the
market, with an average of 10 new testing products entering the market every day.4 Genetic testing is
generally performed by a healthcare provider who can determine the type of test needed, order the test
from a laboratory, collect and send a person’s DNA sample, interpret the test results, and then share
the results with the patient.5 Before a person completes genetic testing from a healthcare provider, a
medical professional obtains specified permission to complete the testing, called informed consent.
"Informed" means that he or she has enough information to make an educated decision about the
testing and "consent" means the person's voluntary agreement to have the testing done.6
Direct-to-Consumer Genetic Testing
In recent years, direct-to-consumer (DTC) genetic testing options have become widely available online
and in stores. For a relatively low fee, anyone can purchase a DTC genetic test kit allowing a person to
spit into a tube or swab the inside of his or her mouth to obtain DNA, mail the sample off, and receive
an analysis shortly thereafter. According to an October 2020 Consumer Reports survey, about one in
five Americans has taken a DTC genetic test.7 Some of the most common brands, such as 23andMe
and Ancestry, offer a variety of information, including matching a person with unknown relatives,
determining what country a person’s ancestors are from, revealing a person’s risk of having certain
1 FindLaw, How DNA Evidence Works, https://criminal.findlaw.com/criminal-procedure/how-dna-evidence-works.html (last visited Mar.
24, 2021).
2 Id.
3 Revolutionary Science, Common Uses for DNA Extraction, (Jul. 9, 2020) https://www.revsci.com/common-uses-for-dna-extraction/
(last visited Mar. 24, 2021).
4
NCBI, Genetic Testing and Spending: Where are we Now? Where are we Going? (May 2018)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5987210/#:~:text=As%20of%20August%201%2C%202017,tests%20were%20single%2
Dgene%20tests (last visited Mar. 24, 2021).
5 MedlinePlus, What is Direct-to-Consumer Testing? NIH National Library of Medicine
https://medlineplus.gov/genetics/understanding/dtcgenetictesting/directtoconsumer/ (last visited Mar. 24, 2021).
6 MedlinePlus, What is Informed Consent, NIH National Library of Medicine
https://medlineplus.gov/genetics/understanding/testing/informedconsent/ (last visited Mar. 24, 2021).
7 Catherine Roberts, Read This Before You Buy a Genetic Testing Kit, Consumer Reports, (Feb. 2, 2021)
https://www.consumerreports.org/genetic-testing/genetic-testing-kit-read-this-before-you-buy/ (last visited Mar. 24, 2021).
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illnesses, and even suggesting what diet is best. However, in addition to potentially useful insights, the
tests can reveal information a person may prefer not to know, and once a person’s genetic data is
shared, it can potentially be sold or used to discriminate against him or her.8
While DTC genetic testing is increasing the number of people who are able to access their genetic
information without involving a healthcare provider or health insurance, regulation of the companies
offering such services has not developed accordingly. The U.S. Food and Drug Administration (FDA)
reviews some DTC genetic tests, but in general, the FDA does not review tests intended for non-
medical, general wellness, or low risk medical purposes or to help a person explore his or her
ancestry.9
Privacy Concerns
The current widespread availability of DTC genetic tests has given rise to questions and concerns
regarding the appropriate use of genetic information. An individual may voluntarily submit to genetic
testing in an effort to gain insights into his or her own genetic history, but third parties may seek to
obtain this same information for other purposes. While federal law does not directly address consumer
privacy issues relating to DTC genetic testing and there is no comprehensive federal law relating to
collecting DNA samples or the sale of genetic information, several laws at the federal and state levels
provide some protection for a person who submits to genetic testing.
Federal Laws
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) included the first federal
regulations on the use of personal genetic information.10 HIPAA prohibits health insurers from using
“preexisting condition” exclusions based solely on an individual’s genetic information. Under HIPAA,
insurers can make coverage decisions using information reflecting diagnosed health conditions, but not
based on genetic indicators alone.11
The Genetic Information Nondiscrimination Act of 2008 (GINA) extended federal patient protections by
protecting a person from genetic discrimination in healthcare and employment. GINA prohibits a health
insurance provider from using or requiring genetic information to make decisions about a person's
insurance eligibility or coverage and prohibits an employer from using a person's genetic information
when making decisions about hiring, promotion, and several other terms of employment.12 However,
the protections in GINA do not extend to other types of insurance, such as life insurance and long-term
care insurance, and GINA only applies when an employer has more than 15 employees.13
The federal Patient Protection and Affordable Care Act14 (PPACA) prohibits most individual and group
health insurers from excluding coverage to or otherwise discriminating against persons with pre-
existing or complex health conditions. Moreover, the law prohibits plans from using most forms of
medical underwriting, which had previously been used to link personal health status to the cost and
availability of health insurance.15
Florida Law
8 Id.
9 FDA, Direct-to-Consumer Test, (Dec. 12, 2019) https://www.fda.gov/medical-devices/vitro-diagnostics/direct-consumer-tests#list (last
visited Mar. 24, 2021).
10 Mark A. Hall. and Rich S. Stephen, Laws Restricting Health Insurers' Use of Genetic Information: Impact on Genetic Discrimination.
AJHG 66(1): 293-307, (Jan. 1, 2000) https://doi.org/10.1086/302714 (last visited Mar. 24, 2021).
11 Id.
12 U.S. Equal Employment Opportunity Commission, The Genetic Information Nondiscrimination Act of 2008,
https://www.eeoc.gov/laws/statutes/gina.cfm (last visited Mar. 24, 2021).
13 Id.
14 Patient Protection and Affordable Care Act (PPACA), Pub. L. No. 111-148. On March 30, 2010, PPACA was amended by the Health
Care and Education Reconciliation Act of 2010, Pub. L. No. 111-152.
15 42 U.S.C. 300gg. The law allows insurers to consider an individual’s age and tobacco use in the development of applicable rates.
However, virtually all other underwriting is prohibited.
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While federal law protects a person’s genetic information only from misuse by a health insurer, in 2020,
the Legislature expanded genetic information protections in Florida by amending s. 627.4301, F.S., to
prohibit a health insurer, life insurer, or long-term care insurer from canceling, limiting, or denying
coverage, and from setting different premium rates, based on a person’s genetic information unless an
insured person has a specific diagnosis related to genetic information.16 Such insurers are also
prohibited from requiring or soliciting genetic information, using the results of any genetic testing a
person may choose to complete, or considering a person’s decisions or actions relating to genetic
testing for any insurance purpose, unless he or she is diagnosed with a condition related to genetic
information.17
Chapter 760, F.S., relates to civil rights and prohibits discrimination in the treatment of persons. Under
s. 760.40, F.S., DNA analysis means the medical and biological examination and analysis of a person
to identify the presence and composition of genes in his or her body and includes DNA typing and
genetic testing. Unless a DNA analysis is used for determining paternity18 or entering a person’s
information into the Florida Department of Law Enforcement’s (FDLE) criminal DNA database,19 a
person commits a first degree misdemeanor by:
Failing to get the informed consent of the person undergoing the analysis; or
Misappropriating, failing to keep confidential, or disclosing without permission a person’s DNA
analysis results, regardless of whether such results are held by a public or private entity.20
A person performing a DNA analysis or receiving records, results, or findings of a DNA analysis must
provide the person tested with notice that the analysis was performed or that the information was
received. The notice must state that the person tested may request that the information be given to his
or her physician and whether the information was used in any decision to grant or deny any insurance,
employment, mortgage, loan, credit, or educational opportunity. If the information was used in any such
decision, the DNA analysis must be repeated to verify the results, and if the first analysis is found to be
inaccurate, the denial must be reviewed.21
Misuse of DNA
As the cost of genetic testing continues to drop and testing becomes increasingly available to the
general public, instances of misusing another person’s DNA have increased. For example, media
sources have collected the DNA of public figures and celebrities without their consent to sell online;
online companies offer to secretly test DNA samples in cases of suspected infidelity or disputed
paternity; and blackmailers, nosy neighbors, or others with ill intent may collect a person’s DNA without
consent for personal vengeance or malicious intent.22
In a Florida case involving alleged defamation and a hate-mail campaign, an attorney created paper
exhibits treated with chemicals designed to gather DNA from any person the paper touched. The
attorney surreptitiously made sure the accused party touched such exhibits during a deposition and
collected the accused party’s used water bottles to perform a DNA analysis and compare the results to
the DNA and fingerprints left on the hate mail.23 The judge in the case stated that “no binding authority
has ever definitively answered the question of whether genetic material such as DNA constitutes
‘property.’”24
16 Ch. 2020-159, Laws of Fla.
17 See also s. 626.9706, F.S., which prohibits insurers from refusing coverage or charging higher premiums to individuals determined to
carry the sickle-cell trait.
18 As provided in ss. 409.256 or 742.12(1), F.S.
19 As provided in s. 943.325, F.S.
20 S. 760.40(2)(a), F.S.
21 S. 760.40(3), F.S.
22 Elizabeth E. Joh, DNA Theft: Recognizing the Crime of Nonconsensual Genetic Collection and Testing, 91 B.U. L. Rev. 665, 670-
972, (2011) https://www.bu.edu/law/journals-archive/bulr/documents/joh.pdf (last visited Mar. 24, 2021).
23 See Douberley v. Perlmutter, 219 So.3d 854, 855 (Fla. 4th DCA 2017).
24 The Columbia Journal of Law & the Arts, Marvel CEO’s Litigation Quagmire Adds to DNA-Property Debate, (Aug. 2, 2019)
https://journals.library.columbia.edu/index.php/lawandarts/announcement/view/56 (last visited Mar. 24, 2021).
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Although existing federal and state laws may protect a person’s unique genetic material from being
misused by insurance providers or for discriminatory purposes, no current law specifically protects a
person’s DNA from being surreptitiously collected or analyzed without his or her consent.
Effect of Proposed Changes
CS/HB 833 creates the “Protecting DNA Privacy Act,” to define terms, change the level of consent
currently required by a person for a lawful analysis of his or her DNA or disclosure of such analysis
results, and create new crimes with increased penalties for collecting or r