SB 217-GENETIC PRIVACY  SENATOR DONNY OLSON, sponsor, told members he introduced SB 217 because current law does not adequately protect and define an individual's right to his or her genetic information. Without such protection, an individual and his or her blood relatives could be abused. CHAIR SEEKINS asked why the legislature should enact a bill that restricts these activities for private industry but not for government entities. SENATOR OLSON said that is a good question, as many people are apprehensive about the actions of government agencies. He pointed out that [indisc.] and AS 09.65.070 pertain to actionable claims against the state, and address everything not covered in the exemptions in SB 217. CHAIR SEEKINS expressed concern that the definition of "a person" in the bill does not include a government agency. He said he would not want the Department of Health and Social Services (DHSS) to be able to collect DNA samples without the same restrictions that will apply to an insurance company. SENATOR OGAN concurred with Chair Seekins' analysis that "we shouldn't necessarily trust the government just because we're the government and we're here to help you." He recalled an incident several years ago in which confidential criminal background records of candidates were accessed by a public employee during an election campaign and said the potential for misuse is there. CHAIR SEEKINS referred to paragraph 2, line 11, on page 1, and noted that language makes a DNA sample and analysis the exclusive property of a person. He doesn't want anyone to imply that language applies except in the hands of a government agency. SENATOR FRENCH asked that a representative from DHSS explain to the committee when and why it would use that information. SENATOR OGAN referred to the private right of action section on page 2, and suggested getting a legal interpretation of whether or not a government agency would be included in the definition of "a person." SENATOR FRENCH said irrespective of whether an agency is at fault, a right of action could be taken against an individual who illegally sold or disclosed confidential information. The next question would be whether the agency is immune to a lawsuit if it adopted a policy of dissemination contrary to law. CHAIR SEEKINS asked whether an employee would be immune from disseminating information if the agency for which the person worked is not restricted from disseminating that information. SENATOR FRENCH said in his opinion, a statute trumps policy but He suggested that DHSS brief the committee on its policies. SENATOR OLSON reminded members that the intent of the bill is to provide some type of protection to an individual regarding his or her DNA information. He noted that although members' concerns are valid, DHSS is not exempt from the informed consent requirement, and the main point of SB 217 is to require informed consent. He repeated that DHSS must get informed consent but what happens afterward is not the focus of the bill; that should be the focus of other legislation. CHAIR SEEKINS asked if government agencies are not specified in the bill for some structural reason. SENATOR OLSON nodded no. SENATOR THERRIAULT asked if another section of statute governs the way a government agency would gather and handle that information. He then expressed concern that the bill uses the word "person" interchangeably to refer to an individual collecting a sample and the person from which a sample is taken. CHAIR SEEKINS commented that he completely agrees with the concept behind SB 217 but is still concerned about plugging all leaks to protect the individual's privacy. SENATOR OLSON said no legislation can plug every leak. Regarding Senator Therriault's concern, he noted other sections of statute deal with actionable claims against the state. That arena is very complex and convoluted. He expressed concern that getting involved in that area would detract from what he is trying to do in this bill. SENATOR THERRIAULT asked if AS 44.41.035 addresses the collection of a DNA sample to establish paternity by DHSS. SENATOR OLSON said AS 44.41.035 deals with the law enforcement exemptions. SENATOR FRENCH commented that subsection (f) spells out the restrictions on the people who collect this data and says the DNA registration system is confidential and can only be used for the reasons listed. He said the committee heard a fair amount of testimony on this issue last year when it contemplated expanding the number of crimes that DNA samples could be collected for. DPS gave a good presentation at that time about how tightly that information is tracked. SENATOR OGAN asked if anyone was available to testify from the Department of Law (DOL). CHAIR SEEKINS said no one was present. SENATOR OGAN noted, for the record, that he has noticed an absence of anyone from DOL at the committee hearings this session. SENATOR FRENCH pointed out that SB 217 was written to hit 90 percent of the target and gives clear direction to the public and the government about when informed consent is required to obtain a DNA sample. He argued that he cannot imagine a situation in which a government official could start selling DNA samples to insurance companies but, if that did happen, a lawsuit and employee firing would resolve the problem. He said he believes this bill is ready to move out of committee. CHAIR SEEKINS said he is trying to find peace with his concerns about the bill. SENATOR THERRIAULT said some of his concerns have been allayed by the fact that other statutes speak to how a sample can be collected and used. He asked, in reference to page 1, line 15, what "other jurisdiction" encompasses and whether it covers a local government or other state agencies. SENATOR FRENCH replied: If I were just speaking off the top of my head, I would say it...would be a statute specifically dealing with a DNA identification system and, moreover, it would be a DNA identification system supervised by the Department of Public Safety. If it were something more like paternity or screening newborns or emergency medical treatment, it would fall under the other exceptions under subsection (b). So it would be a DNA identification system and I would say either conducted by the United States Government for their law enforcement purposes or by another state. SENATOR FRENCH thought it unlikely that it would apply to a local government because no other local jurisdiction has DNA identification systems for criminal justice purposes. CHAIR SEEKINS thought "jurisdiction" could apply to a local police department or a subdivision of state government with a law enforcement unit. SENATOR FRENCH disagreed as he thought that reading was too broad. CHAIR SEEKINS asked what a comparable provision would be. SENATOR FRENCH said it must be comparable to AS 44.41.035, which is about DNA identification for the purpose of public safety. CHAIR SEEKINS said if the City of Fairbanks could collect a DNA sample, it would. SENATOR FRENCH said if it did, the sample would be sent to the state crime lab for analysis and retention. The crime lab would then send a report to the City of Fairbanks saying whether the sample was a match taken at the crime scene. CHAIR SEEKINS asked why "another jurisdiction" is included in the bill if it is meaningless. SENATOR OGAN suggested that it may have been included in case an Alaskan city gets its own crime lab in the future. CHAIR SEEKINS said he still feels that government should be required to hold the information as private as anyone else. SENATOR OLSON agreed. CHAIR SEEKINS asked about the letter of intent. SENATOR THERRIAULT said the sponsor was agreeable to [placing the legislative findings and purpose section of the original bill in] a letter of intent. He noted two corrections need to be made to the letter of intent: · Replace the word "has" with "have" on the first line · Add an apostrophe to the end of the word "families" on line 2 SENATOR OLSON said the letter of intent is concise and focuses on what he wants to do with the bill. He commented that the field of biotechnology is getting more and more complicated so it is important to get a handle on it now. SENATOR OGAN said he supports moving the bill from committee today. CHAIR SEEKINS announced that he would take public testimony. 8:43 a.m. MR. JOHN GEORGE, representing the American Council of Life Insurers (ACLI), asked to clarify a few points made at the last meeting regarding how insurance companies share health information. The Division of Insurance is in the process of adopting a privacy regulation. That model closely follows the National Association of Insurance Commissioners' model and the National Conference of Insurance Legislators' model. Those bodies and the Division of Insurance recognize very specific reasons to share health care and genetic information: claims administration and adjustment, underwriting, guarantee fund functions, reinsurance, risk and case management, quality assurance for consumers, actuarial scientific grievance procedures, internal administration and compliance, policyholder services, and audits. The ACLI is concerned that if it cannot share that information, it will be unable to fulfill its legal obligations to policyholders and regulatory bodies. He said insurance companies are very protective of health information. Alaska would be the only state that requires a separate notice, which would make it more difficult for insurers to do business in Alaska. This bill would provide that if a person withdrew his or her authorization, the insurance company would have to remove it from the individual's file and destroy it. The insurance company would then be unable to justify its rating classification. MR. GEORGE told members the ACLI is concerned about the definitions of genetic testing and genetic analysis in the bill. Those definitions are very broad and would include tests the general public might not consider to be genetic tests but could fall within the definition. The ACLI would prefer a narrower definition to exclude specific test results that are collected now. In addition, if a separate authorization is required, the ACLI would prefer that it be drafted and approved by the Division of Insurance rather than DHSS for the sake of consistency. SENATOR THERRIAULT asked for an example of a routine test that would get swept into the definition in the bill. MR. GEORGE said that Dr. Gleason of Northwest Mutual assured him that definition would include iron levels in the blood. He added that any blood test could potentially be a DNA test. He then referred to a proposed amendment and read: A genetic test does not mean a routine physical measurement; a test for drugs, alcohol, cholesterol, or HIV; a test performed for the purpose of diagnosing or detecting disease, illness, impairment, or disorder; or a chemical, blood, or urine analysis or other test that is widely accepted and in use in clinical practice. He noted that Senator Olson might be better able to answer Chair Seekins' question. SENATOR THERRIAULT thought that a routine test would not be considered to be a genetic test under the definition in the bill. CHAIR SEEKINS asked what will change if the definition in the proposed amendment is adopted. MR. GEORGE said people at the ACLI and medical doctors wrote the definition from the member companies. He said he does not have enough medical expertise to answer that question so again deferred to Senator Olson. SENATOR OLSON said he discussed with Dr. Gleason, a professional consultant for the insurance industry, the definition of genetic testing. He told members: As you walk down this very complicated issue, you're going to have people on one side and entities on the other, whether it's the industry on one side and the ACLU on the other, it's a very - quite a tightrope to go ahead and get a handle on and that's the reason for...[END OF SIDE A]. TAPE 04-13, SIDE B  ...before we start getting off into a real complicated biotechnological problem. Specifically, where I had difficulty with the amendment related to the genetic test was that the definition as compared to what's in the bill starts to have a little bit of broader range exemptions for the insurance industry than I was willing to go ahead and take on. For example, as you go ahead and look at some of the issues here, a test performed for the purpose of ... where it says 'tests performed for the purpose of diagnosing and detecting diseases', and then compare that with the last sentence...which is 'widely accepted for use in clinical practice'. All of a sudden the bill has no teeth in it and because of that, I - rather than go through this whole exercise, it becomes an exercise in futility if we don't have any type of solid sentence structure that we can point to that doesn't allow for the purposes of diagnosing and detecting diseases. CHAIR SEEKINS asked Senator Olson if an impairment or disorder can be genetic. SENATOR OLSON said either can. CHAIR SEEKINS asked if a test to diagnose an impairment or disorder could be a DNA analysis. SENATOR OLSON said it could. CHAIR SEEKINS asked, "So, in that case, DNA or RNA...or chromosome test could be used to detect disorder or impairment and would escape this loophole - am I correct or am I wrong - escape the prohibition?" SENATOR OLSON said [the proposed definition] is too broad in his estimation. CHAIR SEEKINS asked if impairment could be a predisposition. SENATOR OLSON said all mortals have some kind of impairment and disorder. CHAIR SEEKINS commented that widens the loophole too much. SENATOR FRENCH agreed and noted that switching to a genetic test would mean a basic rewrite of the bill because the bill speaks throughout about DNA analysis and the current definition is of a DNA analysis. CHAIR SEEKINS again said he is concerned about broadening the definition. SENATOR OGAN thanked Senator Olson for taking time from his profession as a medical doctor to serve in the legislature. CHAIR SEEKINS asked for the will of the committee. SENATOR FRENCH moved CSSB 217(JUD), version I, and its attached fiscal note from committee with individual recommendations. CHAIR SEEKINS announced that without objection, the motion carried. SENATOR FRENCH moved the letter of intent from committee with the noted grammatical corrections. CHAIR SEEKINS announced that without objection, the motion carried. ## CHAIR SEEKINS announced a 5-minute at-ease. #^HB31 #^HJR5