H.B. 56

1

GENETIC PRIVACY AND DISCRIMINATION
2 2002 GENERAL SESSION
3 STATE OF UTAH
4 Sponsor: Paul Ray
5 This act modifies provisions related to health. The act defines terms. The act prohibits
6 employers from using private genetic information for hiring and promotion purposes. The
7 act places restrictions on health insurers' use of genetic information with limited exceptions.
8 The act provides a private right of action for violations after June 2003. The act authorizes
9 the attorney general to enforce the act. The act provides an effective date.
10 This act affects sections of Utah Code Annotated 1953 as follows:
11 ENACTS:
12 26-45-101, Utah Code Annotated 1953
13 26-45-102, Utah Code Annotated 1953
14 26-45-103, Utah Code Annotated 1953
15 26-45-104, Utah Code Annotated 1953
16 26-45-105, Utah Code Annotated 1953
17 26-45-106, Utah Code Annotated 1953
18 31A-22-1601, Utah Code Annotated 1953
19 31A-22-1602, Utah Code Annotated 1953
20 34A-11-101, Utah Code Annotated 1953
21 34A-11-102, Utah Code Annotated 1953
22 Be it enacted by the Legislature of the state of Utah:
23 Section 1. Section 26-45-101 is enacted to read:
24 CHAPTER 45. GENETIC TESTING PRIVACY ACT
25 26-45-101. Title.
26 This chapter is known as the "Genetic Testing Privacy Act."
27 Section 2. Section 26-45-102 is enacted to read:

28 26-45-102. Definitions.
29 As used in this chapter:
30 (1) "Blood Relative" means a person's biologically related:
31 (a) parent;
32 (b) grandparent;
33 (c) child;
34 (d) grandchild;
35 (e) sibling;
36 (f) uncle;
37 (g) aunt;
38 (h) nephew;
39 (i) niece; or
40 (j) first cousin.
41 (2) "DNA" means deoxyribonucleic acid, ribonucleic acid, and chromosomes, which may
42 be analyzed to detect heritable diseases or conditions, including the identification of carriers,
43 predicting risk of disease, or establishing a clinical diagnosis.
44 (3) "DNA sample" means any human biological specimen from which DNA can be
45 extracted, or DNA extracted from such specimen.
46 (4) (a) "Genetic analysis" or "genetic test" means the testing or analysis of an identifiable
47 individual's DNA that results in information that is derived from the presence, absence, alteration,
48 or mutation of an inherited gene or genes, or the presence or absence of a specific DNA marker
49 or markers.
50 (b) "Genetic analysis" or "genetic test" does not mean:
51 (i) a routine physical examination;
52 (ii) a routine chemical, blood, or urine analysis;
53 (iii) a test to identify the presence of drugs or HIV infection; or
54 (iv) a test performed due to the presence of signs, symptoms, or other manifestations of
55 a disease, illness, impairment, or other disorder.
56 (5) "Individual" means the person from whose body the DNA sample originated.
57 (6) "Person" means any person, organization, or entity other than the individual.
58 (7) (a) "Private genetic information" means any information about an identifiable

59 individual that is derived from the presence, absence, alteration, or mutation of an inherited gene
60 or genes, or the presence or absence of a specific DNA marker or markers, and which has been
61 obtained:
62 (i) from a genetic test or analysis of the individual's DNA; or
63 (ii) from a genetic test or analysis of a person's DNA to whom the individual is a blood
64 relative.
65 (b) "Private genetic information" does not include information that is derived from:
66 (i) a routine physical examination;
67 (ii) a routine chemical, blood, or urine analysis;
68 (iii) a test to identify the presence of drugs or HIV infection; or
69 (iv) a test performed due to the presence of signs, symptoms, or other manifestations of
70 a disease, illness, impairment, or other disorder.
71 Section 3. Section 26-45-103 is enacted to read:
72 26-45-103. Restrictions on employers.
73 (1) Except as provided in Subsection (2), an employer, as defined in Section 34A-2-103 ,
74 may not in connection with a hiring, promotion, retention, or other related decision:
75 (a) access or otherwise take into consideration private genetic information about an
76 individual;
77 (b) request or require an individual to consent to a release for the purpose of accessing
78 private genetic information about the individual;
79 (c) request or require an individual or his blood relative to submit to a genetic test; and
80 (d) inquire into or otherwise take into consideration the fact that an individual or his blood
81 relative has taken or refused to take a genetic test.
82 (2) (a) Notwithstanding Subsection (1), an employer may seek an order compelling the
83 disclosure of private genetic information held by an individual or third party pursuant to
84 Subsection (2)(b) in connection with:
85 (i) an employment-related judicial or administrative proceeding in which the individual
86 has placed his health at issue; or
87 (ii) an employment-related decision in which the employer has a reasonable basis to
88 believe that the individual's health condition poses a real and unjustifiable safety risk requiring the
89 change or denial of an assignment.

90 (b) (i) An order compelling the disclosure of private genetic information pursuant to this
91 Subsection (2) may only be entered upon a finding that:
92 (A) other ways of obtaining the private information are not available or would not be
93 effective; and
94 (B) there is a compelling need for the private genetic information which substantially
95 outweighs the potential harm to the privacy interests of the individual.
96 (ii) An order compelling the disclosure of private genetic information pursuant to this
97 Subsection (2) shall:
98 (A) limit disclosure to those parts of the record containing information essential to fulfill
99 the objective of the order;
100 (B) limit disclosure to those persons whose need for the information is the basis of the
101 order; and
102 (C) include such other measures as may be necessary to limit disclosure for the protection
103 of the individual.
104 Section 4. Section 26-45-104 is enacted to read:
105 26-45-104. Restrictions on health insurers.
106 (1) Except as provided in Subsection (2), an insurer offering health care insurance as
107 defined in Section 31A-1-301 may not in connection with the offer or renewal of an insurance
108 product or in the determination of premiums, coverage, renewal, cancellation, or any other
109 underwriting decision that pertains directly to the individual or any group of which the individual
110 is a member that purchases insurance jointly:
111 (a) access or otherwise take into consideration private genetic information about an
112 asymptomatic individual;
113 (b) request or require an asymptomatic individual to consent to a release for the purpose
114 of accessing private genetic information about the individual;
115 (c) request or require an asymptomatic individual or his blood relative to submit to a
116 genetic test; and
117 (d) inquire into or otherwise take into consideration the fact that an asymptomatic
118 individual or his blood relative has taken or refused to take a genetic test.
119 (2) An insurer offering health care insurance:
120 (a) may request h [ and obtain ] h information regarding the necessity of a genetic test, but
120a not

121 the results of the test, if a claim for payment for the test has been made against an individual's
122 health insurance policy;
123 (b) may request h [ and obtain ] h that portion of private genetic information that is
123a necessary to
124 determine the insurer's obligation to pay for health care services where:
125 (i) the primary basis for rendering such services to an individual is the result of a genetic
126 test; and
127 (ii) a claim for payment for such services has been made against the individual's health
128 insurance policy;
129 (c) may only store information obtained under this Subsection (2) h [ until the insurer's
130 obligation to pay for a genetic test or health care services has been fully resolved ] IN ACCORDANCE
130a WITH THE PROVISIONS OF THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF
130b 1996 h ; and
131 (d) may only use or otherwise disclose the information obtained under this Subsection (2)
132 in connection with a proceeding to determine the obligation of an insurer to pay for a genetic test
133 or health care services, provided that h [ : ] , IN ACCORDANCE WITH THE PROVISIONS OF THE
133a HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF 1996, THE INSURER MAKES A
133b REASONABLE EFFORT TO LIMIT DISCLOSURE TO THE MINIMUM NECESSARY TO CARRY OUT THE
133c PURPOSES OF THE DISCLOSURE. h
134 h [ (i) the disclosure of the information is limited to those persons who are direct participants
135 in the proceeding with a legitimate need to know the information;
136 (ii) the disclosure does not include disclosure of payment for a genetic test to a shared
137 insurance industry database; and
138 (iii) reasonable measures have been taken to limit disclosure for the protection of the
139 individual. ] h
140 (3) (a) An insurer may, to the extent permitted by Subsection (2), seek an order compelling
141 the disclosure of private genetic information held by an individual or third party.
142 (b) An order authorizing the disclosure of private genetic information pursuant to this
143 Subsection (2) shall:
144 (i) limit disclosure to those parts of the record containing information essential to fulfill
145 the objectives of the order;
146 (ii) limit disclosure to those persons whose need for the information is the basis for the
147 order; and
148 (iii) include such other measures as may be necessary to limit disclosure for the protection
149 of the individual.

150 (4) Nothing in this section may be construed as restricting the ability of an insurer to use
151 information other than private genetic information to take into account the health status of an

152 individual, group, or population in determining premiums or making other underwriting decisions.
153 (5) Nothing in this section may be construed as requiring an insurer to pay for genetic
154 testing.
155 (6) Information maintained by an insurer about an individual under this section may be
156 redisclosed:
157 (a) h [ except as prohibited by Subsection (2)(d)(ii), ] h to protect the interests of the insurer in
158 detecting, prosecuting, or taking legal action against criminal activity, fraud, material
159 misrepresentations, and material omissions;
160 (b) to enable business decisions to be made about the purchase, transfer, merger,
161 reinsurance, or sale of all or part of the insurer's business; and
162 (c) to the commissioner of insurance upon formal request.
163 Section 5. Section 26-45-105 is enacted to read:
164 26-45-105. Private right of action.
165 (1) An individual whose legal rights arising under this chapter have been violated after
166 June 30, 2003, may recover damages and be granted equitable relief in a civil action.
167 (2) Any h [ person ] INSURANCE COMPANY OR EMPLOYER h who violates the legal rights
167a of an individual arising from this chapter shall
168 be liable to the individual for each separate violation in an amount equal to:
169 (a) actual damages sustained as a result of the violation;
170 (b) (i) $100,000 if the violation is the result of an intentional and wilful act; or
171 (ii) punitive damages if the violation is the result of a malicious act; and
172 (c) reasonable attorneys' fees.
173 Section 6. Section 26-45-106 is enacted to read:
174 26-45-106. Enforcement.
175 (1) Whenever the attorney general has reason to believe that any person is using or is about
176 to use any method, act, or practice in violation of the provisions of this chapter, and that
177 proceedings would be in the public interest, the attorney general may bring an action against the
178 person to restrain or enjoin the use of such method, act, or practice.
179 (2) In addition to restraining or enjoining the use of a method, act, or practice, the court
180 may, after June 30, 2003, require the payment of:
181 (a) a civil fine of not more than $25,000 for each separate intentional violation; and
182 (b) reasonable costs of investigation and litigation, including reasonable attorneys' fees.

183 Section 7. Section 31A-22-1601 is enacted to read:
184 Part 16. Genetic Testing Restrictions on Insurers
185 31A-22-1601. Title.
186 This part is known as the "Genetic Testing Restrictions on Insurers Act."
187 Section 8. Section 31A-22-1602 is enacted to read:
188 31A-22-1602. Genetic testing restrictions.
189 With respect to matters related to genetic testing and private genetic information, an insurer
190 shall comply with Section 26-45-104 and the other applicable provisions of Title 26, Chapter 45,
191 Genetic Testing Privacy Act.
192 Section 9. Section 34A-11-101 is enacted to read:
193 CHAPTER 11. GENETIC TESTING RESTRICTIONS ON EMPLOYERS ACT
194 34A-11-101. Title.
195 This chapter is known as the "Genetic Testing Restrictions on Employers Act."
196 Section 10. Section 34A-11-102 is enacted to read:
197 34A-11-102. Restrictions on employers.
198 With respect to matters related to genetic testing and private genetic information, an
199 employer shall comply with Section 26-45-103 and the other applicable provisions of Title 26,
200 Chapter 45, Genetic Testing Privacy Act.
201 Section 11. Effective date.
202 This act takes effect on January 1, 2003.




Legislative Review Note
as of 11-20-01 8:32 AM

A limited legal review of this legislation raises no obvious constitutional or statutory concerns.

Office of Legislative Research and General Counsel

Committee Note

The Health and Human Services Interim Committee recommended this bill.