Print Friendly SENATE BILL NO. 1361 – Genetic testing privacy act
SENATE BILL NO. 1361
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S1361.......................................by COMMERCE AND HUMAN RESOURCES
GENETIC TESTING PRIVACY ACT - Adds to existing law relating to genetic
testing privacy to provide a short title; to define terms; to set forth
restrictions regarding genetic testing information applicable to employers
and insurers; to provide for a private right of action; and to provide for
02/08 Senate intro - 1st rdg - to printing
02/09 Rpt prt - to Com/HuRes
]]]] LEGISLATURE OF THE STATE OF IDAHO ]]]]
Fifty-eighth Legislature Second Regular Session - 2006
IN THE SENATE
SENATE BILL NO. 1361
BY COMMERCE AND HUMAN RESOURCES COMMITTEE
1 AN ACT
2 RELATING TO GENETIC TESTING PRIVACY; AMENDING TITLE 39, IDAHO CODE, BY THE
3 ADDITION OF A NEW CHAPTER 83, TITLE 39, IDAHO CODE, TO PROVIDE A SHORT
4 TITLE, TO DEFINE TERMS, TO SET FORTH RESTRICTIONS REGARDING GENETIC TEST-
5 ING INFORMATION APPLICABLE TO EMPLOYERS AND INSURERS, TO PROVIDE FOR A
6 PRIVATE RIGHT OF ACTION AND TO PROVIDE FOR ENFORCEMENT.
7 Be It Enacted by the Legislature of the State of Idaho:
8 SECTION 1. That Title 39, Idaho Code, be, and the same is hereby amended
9 by the addition thereto of a NEW CHAPTER, to be known and designated as Chap-
10 ter 83, Title 39, Idaho Code, and to read as follows:
11 CHAPTER 83
12 GENETIC TESTING PRIVACY ACT
13 39-8301. SHORT TITLE. This chapter shall be known and may be cited as the
14 "Genetic Testing Privacy Act."
15 39-8302. DEFINITIONS. As used in this chapter:
16 (1) "Blood relative" means a person's biologically related parent, grand-
17 parent, child, grandchild, sibling, uncle, aunt, nephew, niece or first
19 (2) "DNA" means deoxyribonucleic acid, ribonucleic acid and chromosomes
20 which may be analyzed to detect heritable diseases or conditions, including
21 the identification of carriers, predicting risk of disease, or establishing a
22 clinical diagnosis.
23 (3) "DNA sample" means any human biological specimen from which DNA can
24 be extracted, or DNA extracted from such specimen.
25 (4) "Employer" means any person, partnership, limited liability company,
26 association, corporation or nonprofit entity that employs one (1) or more per-
27 sons, including the legislative, executive and judicial branches of state gov-
28 ernment; any county, city, or any other political subdivision of the state; or
29 any other separate unit of state or local government.
30 (5) "Genetic analysis" or "genetic test" means the testing or analysis of
31 an identifiable individual's DNA that results in information that is derived
32 from the presence, absence, alteration or mutation of an inherited gene or
33 genes, or the presence or absence of a specific DNA marker or markers.
34 "Genetic analysis" or "genetic test" does not mean:
35 (a) A routine physical examination;
36 (b) A routine chemical, blood or urine analysis;
37 (c) A test to identify the presence of drugs or HIV infection; or
38 (d) A test performed due to the presence of signs, symptoms or other
39 manifestations of a disease, illness, impairment or other disorder.
40 (6) "Individual" means the person from whose body the DNA sample origi-
1 (7) "Insurer" means an insurer offering, or a party administering, a ben-
2 efit plan that provides coverage for medical services and health expenses.
3 (8) "Person" means any person, organization or entity other than the
5 (9) "Private genetic information" means any information about an identi-
6 fiable individual that is derived from the presence, absence, alteration or
7 mutation of an inherited gene or genes, or the presence or absence of a spe-
8 cific DNA marker or markers, and which has been obtained from a genetic test
9 or analysis of the individual's DNA or from a genetic test or analysis of a
10 person's DNA of whom the individual is a blood relative. "Private genetic
11 information" does not include information that is derived from:
12 (a) A routine physical examination;
13 (b) A routine chemical, blood or urine analysis;
14 (c) A test to identify the presence of drugs or HIV infection; or
15 (d) A test performed due to the presence of signs, symptoms or other
16 manifestations of a disease, illness, impairment or other disorder.
17 39-8303. RESTRICTIONS ON EMPLOYERS. (1) Except as provided in subsection
18 (2) of this section, an employer shall not, in connection with a hiring, pro-
19 motion, retention or other related decision:
20 (a) Access or otherwise take into consideration private genetic informa-
21 tion about an individual;
22 (b) Request or require an individual to consent to a release for the pur-
23 pose of accessing private genetic information about the individual;
24 (c) Request or require an individual or his blood relative to submit to a
25 genetic test; or
26 (d) Inquire into or otherwise take into consideration the fact that an
27 individual or his blood relative has taken or refused to take a genetic
29 (2) (a) Notwithstanding the provisions of subsection (1) of this section,
30 an employer may seek an order compelling the disclosure of private genetic
31 information held by an individual or third party pursuant to subsection
32 (2)(b) of this section in connection with:
33 (i) An employment-related judicial or administrative proceeding in
34 which the individual has placed his health at issue; or
35 (ii) An employment-related decision in which the employer has a rea-
36 sonable basis to believe that the individual's health condition poses
37 a real and unjustifiable safety risk requiring the change or denial
38 of an assignment.
39 (b) (i) An order compelling the disclosure of private genetic
40 information pursuant to this subsection (2) may only be entered upon
41 a finding that:
42 (A) Other ways of obtaining the private information are not
43 available or would not be effective; and
44 (B) There is a compelling need for the private genetic informa-
45 tion which substantially outweighs the potential harm to the
46 privacy interests of the individual.
47 (ii) An order compelling the disclosure of private genetic informa-
48 tion pursuant to this subsection (2) shall:
49 (A) Limit disclosure to those parts of the record containing
50 information essential to fulfill the objective of the order;
51 (B) Limit disclosure to those persons whose need for the infor-
52 mation is the basis of the order; and
53 (C) Include such other measures as may be necessary to limit
54 disclosure for the protection of the individual.
1 39-8304. RESTRICTIONS ON INSURERS. (1) Except as provided in subsection
2 (2) of this section, an insurer shall not, in connection with the offer or
3 renewal of an insurance product or in the determination of premiums, coverage,
4 renewal, cancellation or any other underwriting decision that pertains
5 directly to the individual or any group of which the individual is a member
6 that purchases insurance jointly:
7 (a) Access or otherwise take into consideration private genetic informa-
8 tion about an asymptomatic individual;
9 (b) Request or require an asymptomatic individual to consent to a release
10 for the purpose of accessing private genetic information about the indi-
12 (c) Request or require an asymptomatic individual or his blood relative
13 to submit to a genetic test; or
14 (d) Inquire into or otherwise take into consideration the fact that an
15 asymptomatic individual or his blood relative has taken or refused to take
16 a genetic test.
17 (2) An insurer may:
18 (a) Request information regarding the necessity of a genetic test, but
19 not the results of the test, if a claim for payment for the test has been
20 made against an individual's plan;
21 (b) Request that portion of private genetic information that is necessary
22 to determine the insurer's obligation to pay for health care services
24 (i) The primary basis for rendering such services to an individual
25 is the result of a genetic test; and
26 (ii) A claim for payment for such services has been made against the
27 individual's plan;
28 (c) Store information obtained under this subsection (2) only if such
29 storage is in accordance with the provisions of the health insurance por-
30 tability and accountability act of 1996; and
31 (d) Only use or otherwise disclose the information obtained under this
32 subsection (2) in connection with a proceeding to determine the obligation
33 of an insurer to pay for a genetic test or health care services provided
34 that, in accordance with the provisions of the health insurance portabil-
35 ity and accountability act of 1996, the insurer makes a reasonable effort
36 to limit disclosure to the minimum necessary to carry out the purposes of
37 the disclosure.
38 (3) (a) An insurer may, to the extent permitted under subsection (2) of
39 this section, seek an order compelling the disclosure of private genetic
40 information held by an individual or third party.
41 (b) An order authorizing the disclosure of private genetic information
42 pursuant to this subsection (3) shall:
43 (i) Limit disclosure to those parts of the record containing infor-
44 mation essential to fulfill the objectives of the order;
45 (ii) Limit disclosure to those persons whose need for the informa-
46 tion is the basis for the order; and
47 (iii) Include such other measures as may be necessary to limit dis-
48 closure for the protection of the individual.
49 (4) Nothing in this section may be construed as restricting the ability
50 of an insurer to use information other than private genetic information to
51 take into account the health status of an individual, group or population in
52 determining premiums or making other underwriting decisions.
53 (5) Nothing in this section may be construed as requiring an insurer to
54 pay for genetic testing.
55 (6) Information maintained by an insurer about an individual under this
1 section may be redisclosed:
2 (a) To protect the interests of the insurer in detecting, prosecuting, or
3 taking legal action against criminal activity, fraud, material misrepre-
4 sentations and material omissions;
5 (b) To enable business decisions to be made about the purchase, transfer,
6 merger, reinsurance or sale of all or part of the insurer's business; and
7 (c) To the director of the department of insurance upon formal request.
8 39-8305. PRIVATE RIGHT OF ACTION. (1) An individual whose legal rights
9 arising under this chapter have been violated after July 1, 2006, may recover
10 damages and be granted equitable relief in a civil action.
11 (2) Any employer or insurer who violates the legal rights of an individ-
12 ual arising from this chapter shall be liable to the individual for each sepa-
13 rate violation in an amount equal to:
14 (a) Actual damages sustained as a result of the violation;
15 (b) (i) One hundred thousand dollars ($100,000) if the violation is the
16 result of an intentional and willful act; or
17 (ii) Punitive damages if the violation is the result of a malicious
18 act; and
19 (c) Reasonable attorney's fees.
20 39-8306. ENFORCEMENT. (1) Whenever the attorney general has reason to
21 believe that any person is using or is about to use any method, act or prac-
22 tice in violation of the provisions of this chapter, and that proceedings
23 would be in the public interest, the attorney general may bring an action
24 against the person to restrain or enjoin the use of such method, act or prac-
26 (2) In addition to restraining or enjoining the use of a method, act or
27 practice, the court may, after July 1, 2006, require the payment of:
28 (a) A civil fine of not more than twenty-five thousand dollars ($25,000)
29 for each separate intentional violation; and
30 (b) Reasonable costs of investigation and litigation, including reason-
31 able attorney's fees.
STATEMENT OF PURPOSE
*The purpose of this proposed legislation is to ensure the
privacy of genetic testing results. A person wishing to have
testing done to either confirm or deny their predisposition to
any genetic illness should not have the test results used against
them either by employers or insurers.
* There is no fiscal impact to the state general fund or any unit
of local government.
Name: Sen. Joyce Broadsword
Rep. Mary Lou Shepherd
STATEMENT OF PURPOSE/FISCAL NOTE S 1361