1     
GENETIC PRIVACY AMENDMENTS

2     
2022 GENERAL SESSION

3     
STATE OF UTAH

4     
Chief Sponsor: Michael S. Kennedy

5     
House Sponsor: Steve Eliason

6     

7     LONG TITLE
8     General Description:
9          This bill amends the Genetic Testing Privacy Act regarding genetic procedures.
10     Highlighted Provisions:
11          This bill:
12          ▸     amends the definition of "DNA" and "private genetic information";
13          ▸     defines "genetic procedure";
14          ▸     amends restrictions on employers regarding requests or inquiries about genetic
15     procedures;
16          ▸     amends restrictions on health insurers regarding requests or inquiries about genetic
17     procedures; and
18          ▸     makes technical and conforming changes.
19     Money Appropriated in this Bill:
20          None
21     Other Special Clauses:
22          None
23     Utah Code Sections Affected:
24     AMENDS:
25          26-45-102, as enacted by Laws of Utah 2002, Chapter 120
26          26-45-103, as enacted by Laws of Utah 2002, Chapter 120
27          26-45-104, as enacted by Laws of Utah 2002, Chapter 120
28          26-45-105, as enacted by Laws of Utah 2002, Chapter 120
29     REPEALS:
30          26-45-101, as enacted by Laws of Utah 2002, Chapter 120
31     

32     Be it enacted by the Legislature of the state of Utah:
33          Section 1. Section 26-45-102 is amended to read:
34     
CHAPTER 45. GENETIC TESTING AND PROCEDURE PRIVACY ACT

35          26-45-102. Definitions.
36          As used in this chapter:
37          (1) "Blood relative" means [a person's] an individual's biologically related:
38          (a) parent;
39          (b) grandparent;
40          (c) child;
41          (d) grandchild;
42          (e) sibling;
43          (f) uncle;
44          (g) aunt;
45          (h) nephew;
46          (i) niece; or
47          (j) first cousin.
48          (2) "DNA" means:
49          (a) deoxyribonucleic acid, ribonucleic acid, and chromosomes, which may be analyzed
50     to detect heritable diseases or conditions, including the identification of carriers, predicting risk
51     of disease, or establishing a clinical diagnosis[.]; or
52          (b) proteins, enzymes, or other molecules associated with a genetic process, which may
53     be modified, replaced in part or whole, superseded, or bypassed in function by a health or
54     medical procedure.
55          (3) "DNA sample" means any human biological specimen from which DNA can be
56     extracted, or DNA extracted from such specimen.
57          (4) "Employer" means the same as that term is defined in Section 34A-2-103.
58          [(4)] (5) (a) "Genetic analysis" or "genetic test" means the testing, detection, or analysis
59     of an identifiable individual's DNA that results in information that is derived from the
60     presence, absence, alteration, or mutation of an inherited gene or genes, or the presence or
61     absence of a specific DNA marker or markers.
62          (b) "Genetic analysis" or "genetic test" does not mean:
63          (i) a routine physical examination;
64          (ii) a routine chemical, blood, or urine analysis;
65          (iii) a test to identify the presence of drugs or HIV infection; or
66          (iv) a test performed due to the presence of signs, symptoms, or other manifestations of
67     a disease, illness, impairment, or other disorder.
68          [(5) "Individual" means the person from whose body the DNA sample originated.]
69          [(6) "Person" means any person, organization, or entity other than the individual.]
70          (6) "Genetic procedure" means any therapy, treatment, or medical procedure that is
71     intended to:
72          (a) add, remove, alter, activate, change, or cause mutation in an individual's inherited
73     DNA; or
74          (b) replace, supersede, or bypass a normal DNA function.
75          (7) "Health care insurance" means the same as that term is defined in Section
76     31A-1-301.
77          [(7)] (8) (a) "Private genetic information" means any information about an identifiable
78     individual that:
79          (i) is derived from:
80          (A) the presence, absence, alteration, or mutation of an inherited gene or genes[,]; or
81          (B) the presence or absence of a specific DNA marker or markers[,]; and [which]
82          (ii) has been obtained:
83          [(i)] (A) from a genetic test or analysis of the individual's DNA; [or]
84          [(ii)] (B) from a genetic test or analysis of [a person's DNA to whom the individual is]
85     the DNA of a blood relative[.] of the individual; or
86          (C) from a genetic procedure.
87          (b) "Private genetic information" does not include information that is derived from:
88          (i) a routine physical examination;
89          (ii) a routine chemical, blood, or urine analysis;
90          (iii) a test to identify the presence of drugs or HIV infection; or
91          (iv) a test performed due to the presence of signs, symptoms, or other manifestations of
92     a disease, illness, impairment, or other disorder.
93          Section 2. Section 26-45-103 is amended to read:
94          26-45-103. Restrictions on employers.
95          (1) Except as provided in Subsection (2), an employer[, as defined in Section
96     34A-2-103,] may not in connection with a hiring, promotion, retention, or other related
97     decision:
98          (a) access or otherwise take into consideration private genetic information about an
99     individual;
100          (b) request or require an individual to consent to a release for the purpose of accessing
101     private genetic information about the individual;
102          (c) request or require an individual or [his] the individual's blood relative to submit to:
103          (i) a genetic test; [and] or
104          (ii) a genetic procedure; or
105          (d) inquire into or otherwise take into consideration the fact that an individual or [his]
106     the individual's blood relative has:
107          (i) taken or refused to take a genetic test[.]; or
108          (ii) undergone or refused to undergo a genetic procedure.
109          (2) (a) Notwithstanding Subsection (1), an employer may seek an order compelling the
110     disclosure of private genetic information held by an individual or third party pursuant to
111     Subsection (2)(b) in connection with:
112          (i) an employment-related judicial or administrative proceeding in which the individual
113     has placed his health at issue; or
114          (ii) an employment-related decision in which the employer has a reasonable basis to
115     believe that the individual's health condition poses a real and unjustifiable safety risk requiring
116     the change or denial of an assignment.
117          (b) (i) An order compelling the disclosure of private genetic information pursuant to
118     this Subsection (2) may only be entered upon a finding that:
119          (A) other ways of obtaining the private information are not available or would not be
120     effective; and
121          (B) there is a compelling need for the private genetic information which substantially
122     outweighs the potential harm to the privacy interests of the individual.
123          (ii) An order compelling the disclosure of private genetic information pursuant to this
124     Subsection (2) shall:
125          (A) limit disclosure to those parts of the record containing information essential to
126     fulfill the objective of the order;
127          (B) limit disclosure to those persons whose need for the information is the basis of the
128     order; and
129          (C) include such other measures as may be necessary to limit disclosure for the
130     protection of the individual.
131          Section 3. Section 26-45-104 is amended to read:
132          26-45-104. Restrictions on health insurers.
133          (1) Except as provided in Subsection (2), an insurer offering health care insurance [as
134     defined in Section 31A-1-301] may not in connection with the offer or renewal of an insurance
135     product or in the determination of premiums, coverage, renewal, cancellation, or any other
136     underwriting decision that pertains directly to the individual or any group of which the
137     individual is a member that purchases insurance jointly:
138          (a) access or otherwise take into consideration private genetic information about an
139     asymptomatic individual;
140          (b) request or require an asymptomatic individual to consent to a release for the
141     purpose of accessing private genetic information about the individual;
142          (c) request or require an asymptomatic individual or [his] the individual's blood
143     relative to submit to a genetic test; [and]
144          (d) inquire into or otherwise take into consideration the fact that an asymptomatic
145     individual or [his] the individual's blood relative has taken or refused to take a genetic test[.];
146          (e) request or require an individual or the individual's blood relative to submit to a
147     genetic procedure; or
148          (f) inquire into the results of a genetic procedure that an individual or the individual's
149     blood relative undergoes.
150          (2) An insurer offering health care insurance:
151          (a) may request information regarding the necessity of a genetic test, but not the results
152     of the test, if a claim for payment for the test has been made against an individual's health
153     insurance policy;
154          (b) may request information regarding the necessity of a genetic procedure, including
155     the results of the procedure, if a claim for payment for the procedure has been made against an
156     individual's health insurance policy;
157          [(b)] (c) may request that portion of private genetic information that is necessary to
158     determine the insurer's obligation to pay for health care services where:
159          (i) the primary basis for rendering such services to an individual is the result of a
160     genetic test; and
161          (ii) a claim for payment for such services has been made against the individual's health
162     insurance policy;
163          [(c)] (d) may only store information obtained under this Subsection (2) in accordance
164     with the provisions of the Health Insurance Portability and Accountability Act of 1996; and
165          [(d)] (e) may only use or otherwise disclose the information obtained under this
166     Subsection (2) in connection with a proceeding to determine the obligation of an insurer to pay
167     for a genetic test or health care services, provided that, in accordance with the provisions of the
168     Health Insurance Portability and Accountability Act of 1996, the insurer makes a reasonable
169     effort to limit disclosure to the minimum necessary to carry out the purposes of the disclosure.
170          (3) (a) An insurer may, to the extent permitted by Subsection (2), seek an order
171     compelling the disclosure of private genetic information held by an individual or third party.
172          (b) An order authorizing the disclosure of private genetic information pursuant to this
173     Subsection (2) shall:
174          (i) limit disclosure to those parts of the record containing information essential to
175     fulfill the objectives of the order;
176          (ii) limit disclosure to those persons whose need for the information is the basis for the
177     order; and
178          (iii) include such other measures as may be necessary to limit disclosure for the
179     protection of the individual.
180          (4) Nothing in this section may be construed as restricting the ability of an insurer to
181     use information other than private genetic information to take into account the health status of
182     an individual, group, or population in determining premiums or making other underwriting
183     decisions.
184          (5) Nothing in this section may be construed as:
185          (a) requiring an insurer to pay for genetic testing or a genetic procedure; or
186          (b) prohibiting the use of step-therapy protocols.
187          (6) Information maintained by an insurer about an individual under this section may be
188     redisclosed:
189          (a) to protect the interests of the insurer in detecting, prosecuting, or taking legal action
190     against criminal activity, fraud, material misrepresentations, and material omissions;
191          (b) to enable business decisions to be made about the purchase, transfer, merger,
192     reinsurance, or sale of all or part of the insurer's business; and
193          (c) to the commissioner of insurance upon formal request.
194          Section 4. Section 26-45-105 is amended to read:
195          26-45-105. Private right of action.
196          (1) (a) An individual whose legal rights arising under this chapter have been violated
197     after June 30, 2003, may recover damages and be granted equitable relief in a civil action.
198          (b) Subsection (1)(a) does not create a legal right prior to the Legislature enacting the
199     right under this chapter.
200          (2) Any insurance company or employer who violates the legal rights of an individual
201     arising from this chapter shall be liable to the individual for each separate violation in an
202     amount equal to:
203          (a) actual damages sustained as a result of the violation;
204          (b) (i) $100,000 if the violation is the result of an intentional and [wilful] willful act; or
205          (ii) punitive damages if the violation is the result of a malicious act; and
206          (c) reasonable attorneys' fees.
207          Section 5. Repealer.
208          This bill repeals:
209          Section 26-45-101, Title.