Indiana 2025 Regular Session

Indiana House Bill HB1521 Compare Versions

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1+*EH1521.1*
2+April 4, 2025
3+ENGROSSED
4+HOUSE BILL No. 1521
5+_____
6+DIGEST OF HB 1521 (Updated April 3, 2025 11:22 am - DI 119)
7+Citations Affected: IC 22-9; IC 24-4.
8+Synopsis: Consumer genetic testing providers. Provides that a person
9+may not discriminate against an individual on the basis of the
10+individual's solicitation and use of consumer genetic testing services or
11+on the basis of the results of genetic testing performed by a provider of
12+consumer genetic testing services (provider). Requires a provider to
13+disclose specified information to an individual who submits biological
14+material to the provider for genetic testing. Prohibits a provider that
15+performs, or causes to be performed, genetic testing on an individual's
16+biological material from: (1) taking specified actions with regard to:
17+(A) the biological material; or (B) data resulting from genetic testing
18+performed on the biological material; unless the provider has solicited
19+(Continued next page)
20+Effective: Upon passage.
21+Pierce K, Morris, Commons
22+(SENATE SPONSORS — HUNLEY, JOHNSON T, BUCHANAN, KOCH,
23+FORD J.D., SPENCER)
24+January 21, 2025, read first time and referred to Committee on Commerce, Small Business
25+and Economic Development.
26+February 6, 2025, amended, reported — Do Pass.
27+February 10, 2025, read second time, ordered engrossed.
28+February 11, 2025, engrossed. Read third time, passed. Yeas 91, nays 0.
29+SENATE ACTION
30+March 3, 2025, read first time and referred to Committee on Commerce and Technology.
31+April 3, 2025, amended, reported favorably — Do Pass.
32+EH 1521—LS 7089/DI 119 Digest Continued
33+and received the individual's consent to the action; or (2) providing
34+data, other than deidentified data, resulting from genetic testing
35+performed on the individual's biological material to: (A) an insurer; (B)
36+a business that provides information or data to insurers for the purposes
37+of underwriting or rating of risks; or (C) the individual's employer.
38+Imposes requirements on a provider with respect to: (1) controlling
39+access to an individual's biological material and data; (2) complying
40+with the individual's revocation of consent with regard to the
41+individual's biological material and data; and (3) marketing or
42+advertising sent to the individual as a result of the individual's
43+solicitation and use of the provider's genetic testing services or use of
44+a website or other remote or virtual service associated with the
45+provider's genetic testing services. Provides that a provider may not
46+charge a fee for the provision of biological material or data resulting
47+from genetic testing performed on biological material: (1) to a law
48+enforcement agency on the basis of a search warrant; or (2) as required
49+by a court order; that is more than the provider's actual cost of
50+providing the material or data. Provides for enforcement of the bill's
51+provisions by the attorney general.
52+EH 1521—LS 7089/DI 119EH 1521—LS 7089/DI 119 April 4, 2025
153 First Regular Session of the 124th General Assembly (2025)
254 PRINTING CODE. Amendments: Whenever an existing statute (or a section of the Indiana
355 Constitution) is being amended, the text of the existing provision will appear in this style type,
456 additions will appear in this style type, and deletions will appear in this style type.
557 Additions: Whenever a new statutory provision is being enacted (or a new constitutional
658 provision adopted), the text of the new provision will appear in this style type. Also, the
759 word NEW will appear in that style type in the introductory clause of each SECTION that adds
860 a new provision to the Indiana Code or the Indiana Constitution.
961 Conflict reconciliation: Text in a statute in this style type or this style type reconciles conflicts
1062 between statutes enacted by the 2024 Regular Session of the General Assembly.
11-HOUSE ENROLLED ACT No. 1521
12-AN ACT to amend the Indiana Code concerning trade regulation.
63+ENGROSSED
64+HOUSE BILL No. 1521
65+A BILL FOR AN ACT to amend the Indiana Code concerning trade
66+regulation.
1367 Be it enacted by the General Assembly of the State of Indiana:
14-SECTION 1. IC 22-9-14 IS ADDED TO THE INDIANA CODE AS
15-A NEW CHAPTER TO READ AS FOLLOWS [EFFECTIVE UPON
16-PASSAGE]:
68+1 SECTION 1. IC 22-9-14 IS ADDED TO THE INDIANA CODE AS
69+2 A NEW CHAPTER TO READ AS FOLLOWS [EFFECTIVE UPON
70+3 PASSAGE]:
71+4 Chapter 14. Genetic Discrimination
72+5 Sec. 1. The definitions in IC 24-4-24 apply throughout this
73+6 chapter.
74+7 Sec. 2. A person may not discriminate against an individual on
75+8 the basis of the individual's solicitation and use of consumer
76+9 genetic testing services or on the basis of the results of genetic
77+10 testing performed by a consumer genetic testing provider,
78+11 including by discriminating against the individual in any of the
79+12 following ways:
80+13 (1) Denying the individual access to the person's goods or
81+14 services.
82+15 (2) Charging the individual a different rate for the person's
83+16 goods or services.
84+17 (3) Suggesting that the individual will be subject to any of the
85+EH 1521—LS 7089/DI 119 2
86+1 measures described in subdivisions (1) through (2).
87+2 SECTION 2. IC 24-4-24 IS ADDED TO THE INDIANA CODE AS
88+3 A NEW CHAPTER TO READ AS FOLLOWS [EFFECTIVE UPON
89+4 PASSAGE]:
90+5 Chapter 24. Consumer Genetic Testing Providers
91+6 Sec. 1. (a) As used in this chapter, "consumer genetic testing"
92+7 means a service in which a person:
93+8 (1) provides an individual with a means of submitting a
94+9 sample of the individual's biological material directly to the
95+10 person;
96+11 (2) performs, or causes to be performed, genetic testing on the
97+12 submitted biological material; and
98+13 (3) returns the results of the genetic testing directly to the
99+14 individual.
100+15 (b) The term does not include genetic testing:
101+16 (1) of biological material of a patient of a health care provider
102+17 (as defined in IC 16-18-2-163(a)), the collection and testing of
103+18 which is:
104+19 (A) performed at the request or direction of the health care
105+20 provider for the purpose of the diagnosis, cure, mitigation,
106+21 treatment, or prevention of a physical or mental illness,
107+22 injury, disease, disorder, or disability; and
108+23 (B) subject to the Health Insurance Portability and
109+24 Accountability Act (HIPAA) (P.L. 104-191);
110+25 (2) performed as required by a court order;
111+26 (3) performed for purposes of a law enforcement investigation
112+27 at the request or direction of a law enforcement agency;
113+28 (4) performed at the request or direction of a coroner or
114+29 medical examiner for purposes of investigating the cause of an
115+30 individual's death; or
116+31 (5) performed for purposes of research (as defined in 45 CFR
117+32 164.501) that is subject to:
118+33 (A) 21 CFR 50 and 21 CFR 56; or
119+34 (B) 45 CFR 46.
120+35 Sec. 2. As used in this chapter, "consumer genetic testing
121+36 provider" or "provider" means a person that, in the ordinary
122+37 course of the person's business:
123+38 (1) offers consumer genetic testing; or
124+39 (2) collects, uses, or analyzes genetic data that:
125+40 (A) results from a consumer genetic testing product or
126+41 service; and
127+42 (B) is provided to the person by a consumer;
128+EH 1521—LS 7089/DI 119 3
129+1 in exchange for consideration.
130+2 Sec. 3. As used in this chapter, "deidentified data" means data
131+3 that cannot reasonably be used to infer information about, or
132+4 otherwise be linked to, an identifiable consumer and that:
133+5 (1) is subject to:
134+6 (A) administrative and technical measures to ensure that
135+7 the data cannot be associated with a particular consumer;
136+8 (B) public commitment by the holder of the data to:
137+9 (i) maintain and use the data in deidentified form; and
138+10 (ii) not attempt to reidentify the data; and
139+11 (C) legally enforceable contractual obligations that
140+12 prohibit any recipients of the data from attempting to
141+13 reidentify the data; or
142+14 (2) meets requirements for deidentification of the data set
143+15 forth in 45 CFR 164.514.
144+16 Sec. 4. As used in this chapter, "DNA" has the meaning set forth
145+17 in IC 10-13-6-2.
146+18 Sec. 5. As used in this chapter, "genetic data" means any data,
147+19 regardless of format, that:
148+20 (1) results from the analysis of an individual's biological
149+21 material, including analysis of:
150+22 (A) the complete DNA;
151+23 (B) regions of the DNA;
152+24 (C) chromosomes;
153+25 (D) genes; or
154+26 (E) gene products; and
155+27 (2) concerns an individual's genetic characteristics.
156+28 The term does not include deidentified data.
157+29 Sec. 6. As used in this chapter, "genetic testing" means analysis
158+30 of genetic data.
159+31 Sec. 7. As used in this chapter, "insurer" has the meaning set
160+32 forth in IC 27-1-2-3.
161+33 Sec. 8. (a) A consumer genetic testing provider may not
162+34 perform, or cause to be performed, genetic testing on an
163+35 individual's biological material unless the provider has provided
164+36 the individual with a written disclosure of the provider's privacy
165+37 policy, including the provider's policies and procedures regarding
166+38 the provider's collection, maintenance, security, retention, and use
167+39 of both biological material sent to the provider and data resulting
168+40 from genetic testing performed on the biological material.
169+41 (b) The disclosure under subsection (a) must include complete
170+42 information regarding the following:
171+EH 1521—LS 7089/DI 119 4
172+1 (1) The identity of any third party that may perform genetic
173+2 testing on biological material sent to the third party by the
174+3 provider.
175+4 (2) The manner in which:
176+5 (A) biological material sent to the provider; and
177+6 (B) data resulting from genetic testing performed on
178+7 biological material sent to the provider;
179+8 is stored, transferred, and secured.
180+9 (3) Any:
181+10 (A) testing or analysis that the provider performs or causes
182+11 to be performed on; or
183+12 (B) other purpose for which the provider uses;
184+13 biological material sent by an individual to the provider that
185+14 is in addition to the genetic testing requested by the
186+15 individual.
187+16 (4) The:
188+17 (A) identity of any third party to which the provider
189+18 provides access to:
190+19 (i) biological material sent to the provider; or
191+20 (ii) data resulting from genetic testing performed on
192+21 biological material sent to the provider; and
193+22 (B) purpose for which the third party uses the biological
194+23 material or data.
195+24 (c) A consumer genetic testing provider shall:
196+25 (1) publish the disclosure described in subsection (a) on the
197+26 provider's website; and
198+27 (2) include on the provider's website prominent directions and
199+28 hyperlinks to the location of the disclosure on the provider's
200+29 website.
201+30 Sec. 9. (a) A consumer genetic testing provider that performs,
202+31 or causes to be performed, genetic testing on an individual's
203+32 biological material may not take any of the following actions unless
204+33 the provider has solicited and received the individual's freely given,
205+34 specific, informed, and unambiguous consent to the action:
206+35 (1) Perform, or cause to be performed, any testing or analysis
207+36 of the individual's biological material that is not requested by
208+37 the individual except as required to comply with state and
209+38 federal law.
210+39 (2) Use the individual's biological material for any use other
211+40 than the genetic testing requested by the individual.
212+41 (3) Subject to section 10(b) of this chapter, provide access by
213+42 a third party to:
214+EH 1521—LS 7089/DI 119 5
215+1 (A) the individual's biological material; or
216+2 (B) data, other than deidentified data, resulting from
217+3 genetic testing performed on the individual's biological
218+4 material.
219+5 (4) Retain the individual's biological material for more than
220+6 thirty (30) days after the performance of the genetic testing
221+7 requested by the individual, except as required to comply with
222+8 state or federal law.
223+9 (5) Retain data, other than deidentified data, resulting from
224+10 genetic testing performed on the individual's biological
225+11 material for more than thirty (30) days after the completion
226+12 of the service except as required to comply with state and
227+13 federal law.
228+14 (6) Disseminate advertising or marketing communications to
229+15 the individual based on the individual's genetic testing results.
230+16 (7) Provide information regarding the individual's:
231+17 (A) solicitation and use of the provider's genetic testing
232+18 services; or
233+19 (B) use of the provider's:
234+20 (i) website; or
235+21 (ii) other remote or virtual services;
236+22 associated with the provider's genetic testing services;
237+23 to a third party to enable the third party to disseminate
238+24 advertising or marketing communications to the individual.
239+25 (b) A provider's solicitation of an individual's consent to an
240+26 action described in subsection (a) must:
241+27 (1) describe the action in terms that are sufficiently clear and
242+28 concise as to be reasonably understandable by a person of
243+29 ordinary intelligence; and
244+30 (2) solicit the individual's consent to the action separately
245+31 from a solicitation of the individual's consent to any other
246+32 action described in subsection (a).
247+33 (c) Consent to an action under subsection (a) is not freely given,
248+34 specific, informed, and unambiguous if the consent is provided by
249+35 any of the following means:
250+36 (1) The individual's inaction.
251+37 (2) The individual's acceptance of:
252+38 (A) general or broad terms of service; or
253+39 (B) any other document requiring agreement by an
254+40 individual using the provider's services;
255+41 containing information unrelated to the action under
256+42 subsection (a).
257+EH 1521—LS 7089/DI 119 6
258+1 (3) The individual closing, muting, pausing, or hovering a
259+2 computer cursor over a piece of content.
260+3 (4) The individual's communication of consent through an
261+4 Internet user interface that is designed or manipulated with
262+5 the substantial effect of subverting or impairing user
263+6 autonomy, decision making, or choice.
264+7 Sec. 10. (a) A consumer genetic testing provider that performs,
265+8 or causes to be performed, genetic testing on an individual's
266+9 biological material shall do the following:
267+10 (1) Implement commercially reasonable security measures to
268+11 protect:
269+12 (A) the individual's biological material; and
270+13 (B) data resulting from genetic testing performed on the
271+14 individual's biological material;
272+15 from unauthorized access, destruction, use, modification, or
273+16 disclosure.
274+17 (2) Allow the individual access to any data resulting from
275+18 genetic testing performed on the individual's biological
276+19 material.
277+20 (3) Provide the following:
278+21 (A) A procedure by which the individual can revoke any
279+22 consent provided by the individual under section 9 of this
280+23 chapter. The procedure must enable the individual to
281+24 communicate the revocation:
282+25 (i) directly to the provider; and
283+26 (ii) through one (1) or more means, at least one (1) of
284+27 which must be the primary means by which the provider
285+28 communicates with the individual.
286+29 (B) Both:
287+30 (i) notice of the existence of; and
288+31 (ii) instructions regarding the use of;
289+32 the procedure under clause (A) that are sufficiently clear
290+33 and concise as to be reasonably understandable by a
291+34 person of ordinary intelligence.
292+35 (4) Comply with a revocation of consent by the individual not
293+36 later than thirty (30) days after the individual communicates
294+37 the revocation to the provider, including by:
295+38 (A) destroying the individual's biological material not later
296+39 than thirty (30) days after the individual revokes the
297+40 individual's consent to the provider's retention of the
298+41 biological material under section 9(a)(4) of this chapter;
299+42 and
300+EH 1521—LS 7089/DI 119 7
301+1 (B) destroying any data resulting from genetic testing
302+2 performed on the individual's biological material not later
303+3 than thirty (30) days after the individual revokes the
304+4 individual's consent to the provider's retention of the data
305+5 under section 9(a)(5) of this chapter.
306+6 (5) Provide a third party with access to the individual's
307+7 biological material, or to data resulting from genetic testing
308+8 performed on the individual's biological material, only under
309+9 contractual terms that prohibit the third party from:
310+10 (A) using the biological material or data for any use to
311+11 which the individual has not consented under section 9 of
312+12 this chapter;
313+13 (B) providing another party with access to the biological
314+14 material or data; or
315+15 (C) retaining the biological material or data longer than
316+16 the provider is authorized to retain the biological material
317+17 or data under this chapter.
318+18 (6) Ensure that:
319+19 (A) any advertising or marketing communications sent to
320+20 the individual as a result of the individual's:
321+21 (i) solicitation and use of the provider's services; or
322+22 (ii) use of the provider's website or other remote or
323+23 virtual services;
324+24 are clearly and prominently denoted as advertising or
325+25 marketing materials; and
326+26 (B) advertising or marketing communications described in
327+27 clause (A) that are sent by a third party clearly and
328+28 prominently:
329+29 (i) identify the third party; and
330+30 (ii) notify the individual that any claims made in the
331+31 advertising or marketing communications have not been
332+32 evaluated by the provider.
333+33 (b) A consumer genetic testing provider may not provide data,
334+34 other than deidentified data, resulting from genetic testing
335+35 performed on an individual's biological material to:
336+36 (1) an insurer;
337+37 (2) a person that, in the ordinary course of the person's
338+38 business, provides information or data to insurers for the
339+39 purposes of underwriting or rating of risks; or
340+40 (3) a person that employs the individual;
341+41 regardless of whether the individual has consented to the provider
342+42 providing third parties with access to the data under section 9(a)(3)
343+EH 1521—LS 7089/DI 119 8
344+1 of this chapter.
345+2 (c) A consumer genetic testing provider may not charge a fee for
346+3 the provision of biological material or for the provision of data
347+4 resulting from genetic testing performed on biological material:
348+5 (1) to a law enforcement agency on the basis of a search
349+6 warrant; or
350+7 (2) as required by a court order;
351+8 that is more than the actual cost, not including labor costs or
352+9 overhead costs, to the consumer genetic testing provider of
353+10 providing the material or data.
354+11 Sec. 11. (a) The attorney general has exclusive authority to
355+12 enforce the provisions of this chapter.
356+13 (b) The attorney general may initiate an action in the name of
357+14 the state and may seek an injunction to restrain any violations of
358+15 this chapter and a civil penalty not to exceed seven thousand five
359+16 hundred dollars ($7,500) for each violation under this chapter.
360+17 (c) The attorney general may recover reasonable expenses
361+18 incurred in investigating and preparing the case, including
362+19 attorney's fees, in any action initiated under this section.
363+20 (d) Before initiating an action under this section, the attorney
364+21 general shall provide a provider thirty (30) days written notice
365+22 identifying the specific provisions of this chapter that the attorney
366+23 general alleges have been or are being violated. If, within the thirty
367+24 (30) day period set forth in this subsection, the provider:
368+25 (1) cures the alleged violation; and
369+26 (2) provides the attorney general an express written statement
370+27 that:
371+28 (A) the alleged violation has been cured; and
372+29 (B) actions have been taken to ensure no further such
373+30 violations will occur;
374+31 the attorney general shall not initiate an action against the
375+32 provider.
376+33 (e) If a provider:
377+34 (1) continues an alleged violation following the thirty (30) day
378+35 period set forth in subsection (d); or
379+36 (2) breaches an express written statement provided to the
380+37 attorney general under subsection (d)(2);
381+38 the attorney general may initiate an action against the provider
382+39 under subsection (b).
383+40 (f) Nothing in this section may be construed as providing the
384+41 basis for a private right of action for violations of this chapter or
385+42 any other law.
386+EH 1521—LS 7089/DI 119 9
387+1 SECTION 3. An emergency is declared for this act.
388+EH 1521—LS 7089/DI 119 10
389+COMMITTEE REPORT
390+Mr. Speaker: Your Committee on Commerce, Small Business and
391+Economic Development, to which was referred House Bill 1521, has
392+had the same under consideration and begs leave to report the same
393+back to the House with the recommendation that said bill be amended
394+as follows:
395+Page 8, after line 24, begin a new paragraph and insert:
396+"SECTION 2. IC 35-45-19-1.5, AS ADDED BY P.L.47-2019,
397+SECTION 3, IS AMENDED TO READ AS FOLLOWS [EFFECTIVE
398+JULY 1, 2025]: Sec. 1.5. As used in this chapter, "human remains"
399+means any part of the body of a deceased human being:
400+(1) in any:
401+(A) stage of decomposition; or
402+(B) state of preservation; or
403+(2) that indicate unique deoxyribonucleic acid (DNA).
404+SECTION 3. IC 35-45-19-3, AS AMENDED BY P.L.47-2019,
405+SECTION 4, IS AMENDED TO READ AS FOLLOWS [EFFECTIVE
406+JULY 1, 2025]: Sec. 3. A person who:
407+(1) observes, discovers, or handles human remains when it
408+appears the deceased person died:
409+(A) by violence, suicide, or accident;
410+(B) suddenly, while in apparent good health;
411+(C) while unattended;
412+(D) from poisoning or an overdose of drugs;
413+(E) as the result of a disease that may constitute a threat to
414+public health;
415+(F) as the result of:
416+(i) a disease;
417+(ii) an injury;
418+(iii) a toxic effect; or
419+(iv) unusual exertion;
420+incurred within the scope of the deceased person's
421+employment;
422+(G) due to sudden infant death syndrome;
423+(H) as the result of a diagnostic or therapeutic procedure; or
424+(I) under any other suspicious or unusual circumstances; and
425+(2) knowingly or intentionally fails to report the observation,
426+discovery, or handling of the human remains to a:
427+(A) public safety officer;
428+(B) coroner;
429+(C) funeral director;
430+EH 1521—LS 7089/DI 119 11
431+(D) physician; or
432+(E) 911 telephone call center;
433+within three (3) hours after finding the human remains;
434+commits failure to report the observation, discovery, or handling of
435+human remains, a Class A misdemeanor.".
436+and when so amended that said bill do pass.
437+(Reference is to HB 1521 as introduced.)
438+MORRIS
439+Committee Vote: yeas 9, nays 0.
440+_____
441+COMMITTEE REPORT
442+Mr. President: The Senate Committee on Commerce and
443+Technology, to which was referred Engrossed House Bill No. 1521, has
444+had the same under consideration and begs leave to report the same
445+back to the Senate with the recommendation that said bill be
446+AMENDED as follows:
447+Page 1, between the enacting clause and line 1, begin a new
448+paragraph and insert:
449+"SECTION 1. IC 22-9-14 IS ADDED TO THE INDIANA CODE
450+AS A NEW CHAPTER TO READ AS FOLLOWS [EFFECTIVE
451+UPON PASSAGE]:
17452 Chapter 14. Genetic Discrimination
18453 Sec. 1. The definitions in IC 24-4-24 apply throughout this
19454 chapter.
20455 Sec. 2. A person may not discriminate against an individual on
21456 the basis of the individual's solicitation and use of consumer
22457 genetic testing services or on the basis of the results of genetic
23458 testing performed by a consumer genetic testing provider,
24459 including by discriminating against the individual in any of the
25460 following ways:
26461 (1) Denying the individual access to the person's goods or
27462 services.
28463 (2) Charging the individual a different rate for the person's
29464 goods or services.
30465 (3) Suggesting that the individual will be subject to any of the
31-measures described in subdivisions (1) through (2).
32-SECTION 2. IC 24-4-24 IS ADDED TO THE INDIANA CODE AS
33-A NEW CHAPTER TO READ AS FOLLOWS [EFFECTIVE UPON
34-PASSAGE]:
35-Chapter 24. Consumer Genetic Testing Providers
36-HEA 1521 — Concur 2
37-Sec. 1. (a) As used in this chapter, "consumer genetic testing"
38-means a service in which a person:
39-(1) provides an individual with a means of submitting a
40-sample of the individual's biological material directly to the
41-person;
42-(2) performs, or causes to be performed, genetic testing on the
43-submitted biological material; and
44-(3) returns the results of the genetic testing directly to the
45-individual.
46-(b) The term does not include genetic testing:
47-(1) of biological material of a patient of a health care provider
48-(as defined in IC 16-18-2-163(a)), the collection and testing of
49-which is:
50-(A) performed at the request or direction of the health care
51-provider for the purpose of the diagnosis, cure, mitigation,
52-treatment, or prevention of a physical or mental illness,
53-injury, disease, disorder, or disability; and
54-(B) subject to the Health Insurance Portability and
55-Accountability Act (HIPAA) (P.L. 104-191);
56-(2) performed as required by a court order;
57-(3) performed for purposes of a law enforcement investigation
58-at the request or direction of a law enforcement agency;
59-(4) performed at the request or direction of a coroner or
60-medical examiner for purposes of investigating the cause of an
61-individual's death; or
62-(5) performed for purposes of research (as defined in 45 CFR
63-164.501) that is subject to:
64-(A) 21 CFR 50 and 21 CFR 56; or
65-(B) 45 CFR 46.
66-Sec. 2. As used in this chapter, "consumer genetic testing
67-provider" or "provider" means a person that, in the ordinary
68-course of the person's business:
69-(1) offers consumer genetic testing; or
70-(2) collects, uses, or analyzes genetic data that:
71-(A) results from a consumer genetic testing product or
72-service; and
73-(B) is provided to the person by a consumer;
74-in exchange for consideration.
75-Sec. 3. As used in this chapter, "deidentified data" means data
76-that cannot reasonably be used to infer information about, or
77-otherwise be linked to, an identifiable consumer and that:
78-(1) is subject to:
79-HEA 1521 — Concur 3
80-(A) administrative and technical measures to ensure that
81-the data cannot be associated with a particular consumer;
82-(B) public commitment by the holder of the data to:
83-(i) maintain and use the data in deidentified form; and
84-(ii) not attempt to reidentify the data; and
85-(C) legally enforceable contractual obligations that
86-prohibit any recipients of the data from attempting to
87-reidentify the data; or
88-(2) meets requirements for deidentification of the data set
89-forth in 45 CFR 164.514.
90-Sec. 4. As used in this chapter, "DNA" has the meaning set forth
91-in IC 10-13-6-2.
92-Sec. 5. As used in this chapter, "genetic data" means any data,
93-regardless of format, that:
94-(1) results from the analysis of an individual's biological
95-material, including analysis of:
96-(A) the complete DNA;
97-(B) regions of the DNA;
98-(C) chromosomes;
99-(D) genes; or
100-(E) gene products; and
101-(2) concerns an individual's genetic characteristics.
102-The term does not include deidentified data.
103-Sec. 6. As used in this chapter, "genetic testing" means analysis
104-of genetic data.
105-Sec. 7. As used in this chapter, "insurer" has the meaning set
106-forth in IC 27-1-2-3.
107-Sec. 8. (a) A consumer genetic testing provider may not
108-perform, or cause to be performed, genetic testing on an
109-individual's biological material unless the provider has provided
110-the individual with a written disclosure of the provider's privacy
111-policy, including the provider's policies and procedures regarding
112-the provider's collection, maintenance, security, retention, and use
113-of both biological material sent to the provider and data resulting
114-from genetic testing performed on the biological material.
115-(b) The disclosure under subsection (a) must include complete
116-information regarding the following:
117-(1) The identity of any third party that may perform genetic
118-testing on biological material sent to the third party by the
119-provider.
120-(2) The manner in which:
121-(A) biological material sent to the provider; and
122-HEA 1521 — Concur 4
123-(B) data resulting from genetic testing performed on
124-biological material sent to the provider;
125-is stored, transferred, and secured.
126-(3) Any:
127-(A) testing or analysis that the provider performs or causes
128-to be performed on; or
129-(B) other purpose for which the provider uses;
130-biological material sent by an individual to the provider that
131-is in addition to the genetic testing requested by the
132-individual.
133-(4) The:
134-(A) identity of any third party to which the provider
135-provides access to:
136-(i) biological material sent to the provider; or
137-(ii) data resulting from genetic testing performed on
138-biological material sent to the provider; and
139-(B) purpose for which the third party uses the biological
140-material or data.
141-(c) A consumer genetic testing provider shall:
142-(1) publish the disclosure described in subsection (a) on the
143-provider's website; and
144-(2) include on the provider's website prominent directions and
145-hyperlinks to the location of the disclosure on the provider's
146-website.
147-Sec. 9. (a) A consumer genetic testing provider that performs,
148-or causes to be performed, genetic testing on an individual's
149-biological material may not take any of the following actions unless
150-the provider has solicited and received the individual's freely given,
151-specific, informed, and unambiguous consent to the action:
152-(1) Perform, or cause to be performed, any testing or analysis
153-of the individual's biological material that is not requested by
154-the individual except as required to comply with state and
155-federal law.
156-(2) Use the individual's biological material for any use other
157-than the genetic testing requested by the individual.
158-(3) Subject to section 10(b) of this chapter, provide access by
159-a third party to:
160-(A) the individual's biological material; or
161-(B) data, other than deidentified data, resulting from
162-genetic testing performed on the individual's biological
163-material.
164-(4) Retain the individual's biological material for more than
165-HEA 1521 — Concur 5
166-thirty (30) days after the performance of the genetic testing
167-requested by the individual, except as required to comply with
168-state or federal law.
169-(5) Retain data, other than deidentified data, resulting from
170-genetic testing performed on the individual's biological
171-material for more than thirty (30) days after the completion
172-of the service except as required to comply with state and
173-federal law.
174-(6) Disseminate advertising or marketing communications to
175-the individual based on the individual's genetic testing results.
176-(7) Provide information regarding the individual's:
177-(A) solicitation and use of the provider's genetic testing
178-services; or
179-(B) use of the provider's:
180-(i) website; or
181-(ii) other remote or virtual services;
182-associated with the provider's genetic testing services;
183-to a third party to enable the third party to disseminate
184-advertising or marketing communications to the individual.
185-(b) A provider's solicitation of an individual's consent to an
186-action described in subsection (a) must:
187-(1) describe the action in terms that are sufficiently clear and
188-concise as to be reasonably understandable by a person of
189-ordinary intelligence; and
190-(2) solicit the individual's consent to the action separately
191-from a solicitation of the individual's consent to any other
192-action described in subsection (a).
193-(c) Consent to an action under subsection (a) is not freely given,
194-specific, informed, and unambiguous if the consent is provided by
195-any of the following means:
196-(1) The individual's inaction.
197-(2) The individual's acceptance of:
198-(A) general or broad terms of service; or
199-(B) any other document requiring agreement by an
200-individual using the provider's services;
201-containing information unrelated to the action under
202-subsection (a).
203-(3) The individual closing, muting, pausing, or hovering a
204-computer cursor over a piece of content.
205-(4) The individual's communication of consent through an
206-Internet user interface that is designed or manipulated with
207-the substantial effect of subverting or impairing user
208-HEA 1521 — Concur 6
209-autonomy, decision making, or choice.
210-Sec. 10. (a) A consumer genetic testing provider that performs,
211-or causes to be performed, genetic testing on an individual's
212-biological material shall do the following:
213-(1) Implement commercially reasonable security measures to
214-protect:
215-(A) the individual's biological material; and
216-(B) data resulting from genetic testing performed on the
217-individual's biological material;
218-from unauthorized access, destruction, use, modification, or
219-disclosure.
220-(2) Allow the individual access to any data resulting from
221-genetic testing performed on the individual's biological
222-material.
223-(3) Provide the following:
224-(A) A procedure by which the individual can revoke any
225-consent provided by the individual under section 9 of this
226-chapter. The procedure must enable the individual to
227-communicate the revocation:
228-(i) directly to the provider; and
229-(ii) through one (1) or more means, at least one (1) of
230-which must be the primary means by which the provider
231-communicates with the individual.
232-(B) Both:
233-(i) notice of the existence of; and
234-(ii) instructions regarding the use of;
235-the procedure under clause (A) that are sufficiently clear
236-and concise as to be reasonably understandable by a
237-person of ordinary intelligence.
238-(4) Comply with a revocation of consent by the individual not
239-later than thirty (30) days after the individual communicates
240-the revocation to the provider, including by:
241-(A) destroying the individual's biological material not later
242-than thirty (30) days after the individual revokes the
243-individual's consent to the provider's retention of the
244-biological material under section 9(a)(4) of this chapter;
245-and
246-(B) destroying any data resulting from genetic testing
247-performed on the individual's biological material not later
248-than thirty (30) days after the individual revokes the
249-individual's consent to the provider's retention of the data
250-under section 9(a)(5) of this chapter.
251-HEA 1521 — Concur 7
252-(5) Provide a third party with access to the individual's
253-biological material, or to data resulting from genetic testing
254-performed on the individual's biological material, only under
255-contractual terms that prohibit the third party from:
256-(A) using the biological material or data for any use to
257-which the individual has not consented under section 9 of
258-this chapter;
259-(B) providing another party with access to the biological
260-material or data; or
261-(C) retaining the biological material or data longer than
262-the provider is authorized to retain the biological material
263-or data under this chapter.
264-(6) Ensure that:
265-(A) any advertising or marketing communications sent to
266-the individual as a result of the individual's:
267-(i) solicitation and use of the provider's services; or
268-(ii) use of the provider's website or other remote or
269-virtual services;
270-are clearly and prominently denoted as advertising or
271-marketing materials; and
272-(B) advertising or marketing communications described in
273-clause (A) that are sent by a third party clearly and
274-prominently:
275-(i) identify the third party; and
276-(ii) notify the individual that any claims made in the
277-advertising or marketing communications have not been
278-evaluated by the provider.
279-(b) A consumer genetic testing provider may not provide data,
280-other than deidentified data, resulting from genetic testing
281-performed on an individual's biological material to:
282-(1) an insurer;
283-(2) a person that, in the ordinary course of the person's
284-business, provides information or data to insurers for the
285-purposes of underwriting or rating of risks; or
286-(3) a person that employs the individual;
287-regardless of whether the individual has consented to the provider
288-providing third parties with access to the data under section 9(a)(3)
289-of this chapter.
290-(c) A consumer genetic testing provider may not charge a fee for
291-the provision of biological material or for the provision of data
292-resulting from genetic testing performed on biological material:
293-(1) to a law enforcement agency on the basis of a search
294-HEA 1521 — Concur 8
295-warrant; or
296-(2) as required by a court order;
297-that is more than the actual cost, not including labor costs or
298-overhead costs, to the consumer genetic testing provider of
299-providing the material or data.
300-Sec. 11. (a) The attorney general has exclusive authority to
301-enforce the provisions of this chapter.
302-(b) The attorney general may initiate an action in the name of
303-the state and may seek an injunction to restrain any violations of
304-this chapter and a civil penalty not to exceed seven thousand five
305-hundred dollars ($7,500) for each violation under this chapter.
306-(c) The attorney general may recover reasonable expenses
307-incurred in investigating and preparing the case, including
308-attorney's fees, in any action initiated under this section.
309-(d) Before initiating an action under this section, the attorney
310-general shall provide a provider thirty (30) days written notice
311-identifying the specific provisions of this chapter that the attorney
312-general alleges have been or are being violated. If, within the thirty
313-(30) day period set forth in this subsection, the provider:
314-(1) cures the alleged violation; and
315-(2) provides the attorney general an express written statement
316-that:
317-(A) the alleged violation has been cured; and
318-(B) actions have been taken to ensure no further such
319-violations will occur;
320-the attorney general shall not initiate an action against the
321-provider.
322-(e) If a provider:
323-(1) continues an alleged violation following the thirty (30) day
324-period set forth in subsection (d); or
325-(2) breaches an express written statement provided to the
326-attorney general under subsection (d)(2);
327-the attorney general may initiate an action against the provider
328-under subsection (b).
329-(f) Nothing in this section may be construed as providing the
330-basis for a private right of action for violations of this chapter or
331-any other law.
332-SECTION 3. An emergency is declared for this act.
333-HEA 1521 — Concur Speaker of the House of Representatives
334-President of the Senate
335-President Pro Tempore
336-Governor of the State of Indiana
337-Date: Time:
338-HEA 1521 — Concur
466+measures described in subdivisions (1) through (2).".
467+Page 1, line 2, delete "JULY" and insert "UPON PASSAGE]:".
468+EH 1521—LS 7089/DI 119 12
469+Page 1, delete line 3.
470+Page 8, delete lines 25 through 42, begin a new paragraph and
471+insert:
472+"SECTION 3. An emergency is declared for this act.".
473+Delete page 9.
474+Renumber all SECTIONS consecutively.
475+and when so amended that said bill do pass.
476+(Reference is to HB 1521 as printed February 6, 2025.)
477+BUCHANAN, Chairperson
478+Committee Vote: Yeas 10, Nays 1.
479+EH 1521—LS 7089/DI 119