SB 217-GENETIC PRIVACY  The committee took up SB 217. CHAIR DYSON asked for a motion to adopt Version D as the work draft before the committee. SENATOR WILKEN so moved. CHAIR DYSON announced that without objection, Version D was before the committee. SENATOR DONNY OLSON, sponsor of SB 217, explained to members this legislation is his attempt to get a handle on the complicated issue of genetic privacy. His sponsor statement follows: On June 26, 2000, The Human Genome Project, a public consortium, and Celera Genomics, a private company, jointly announced the completion of a 'working draft of the human genome,' spelling out the 3 billion 'letters' of the human genome - the biochemical messages encoded in our DNA for manufacturing and operating a complete human being. This is the stepping-stone in deciphering the blueprint that makes us human. Every human cell - hair, blood, fingernail parings, and body tissue - carries a complete set of our genes. Consequently, these genetic profiles will yield information that could be used against us. For example, insurance companies can decide whether to issue life insurance based upon our gene make-up, i.e., predisposition to cancer, alcoholism, or other health concerns. We have state laws to restrict access to medical records; however, the State of Alaska has yet to specify any protection of genetic information. Medical information is presumed confidential, but the increasing capability to store and rapidly transfer data escalates the challenge of protecting privacy. At the present time, there is no national statute regarding genetic privacy laws. Fifteen states have required informed consent for a third party to perform or require a genetic test or to obtain genetic information. Twenty-three states require informed consent to disclose genetic information. TAPE 04-3, SIDE B SENATOR OLSON continued: I have introduced SB 217 to give special consideration to the advancing biotechnology and protect our genetic privacy rights. SENATOR OLSON told members his intention is not to interfere with law enforcement, medical necessity, or paternity determination. He said this is the first step in a multi-step action to try to make sure each resident in the state has protection for his/her genetic privacy. He informed members that SB 217 covers all genetic material. There being no questions from members, CHAIR DYSON took public testimony. MR. JOHN GEORGE, American Council of Life Insurers (ACLI), told members that SB 217 is aimed largely at insurance companies to prohibit discrimination. He said by definition in the Alaska Insurance Code, AS 21, discrimination is permitted but cannot be unfair. Rates must be adequate and not unfairly discriminatory. However, anyone can recognize that some people should pay more for auto insurance based on their characteristics. Although every 16- year-old male driver may not have an accident, that driver falls within a class of people with a higher risk than 35-year-old male drivers. Therefore, insurance, by definition, does discriminate. Life insurance rates differ for males and females. Companies cannot discriminate based on rates, but mortality tables show that men and women have different life expectancies. That information is used to determine rates. MR. GEORGE told members that genetic information indicates a person's propensity [for diseases]. He said the ACLI is very concerned that "genetic information" is defined broadly enough to exclude any medical information. The ACLI believes in confidentiality of genetic information and insurance regulations deal with that issue. However, once an insurance company has appropriate underwriting information, it will need to keep that information for the life of the policy to justify why it put a person in a particular underwriting class. SB 217 indicates that once the information is used, it must be disposed of. He said the ACLI has substantial problems with the bill. He spoke with Senator Olson and is in the process of providing suggested language changes. He noted the sponsor indicated that insurance underwriting is a main reason for the introduction of the bill. He said he has not seen Version D before today and is not prepared to address it. He repeated that the ACLI has some serious problems with the original bill and that he is willing to work with the sponsor to come up with some compromise language. SENATOR GUESS asked for an explanation of how the genetic information of groups is currently being used by insurance companies. MR. GEORGE stated: ...first of all, in the broad definition of what is genetic information, if we're talking about looking at a specific gene, a propensity for cancer for instance, that is more specific than information you might find on a questionnaire - has anyone in your family ever had cancer - but it's still genetic information. Any information you get from a blood test - I'm certainly not an expert and I've come late to the table on this, but they are very concerned that the information they are getting now they would not be able to. We don't know what kind of information is going to be available - readily available in the future. I think, as the Senator described, they have made vast progress in unwinding the helix and I guess you come down to a fundamental question of should people pay a rate for their insurance based on what their real characteristics are or should everybody pay the same rate or should we only have three classes or 12 classes. If we're really talking about protecting the information, that's already being done largely. The Division of Insurance has regulations that do that. If we're talking about future uses, who knows what that's going to be. But, they are concerned that information they are getting now [indisc.] that the consent form would be unique to Alaska and so that would create an additional administrative burden because they deal in all 50 states. They do have a form now that H&SS comes up with that they're using. They would have to have a separate form. Failing to do that, if they had an error then there's fairly substantial penalties. I mean there are lots of things that just don't quite work here. SENATOR GUESS asked for a specific example of genetic information the insurance companies use now that they do not believe they could use in the future if SB 217 is enacted. MR. GEORGE said he could not provide one but he would get back to her with an answer. CHAIR DYSON said he assumes the Senator's concern is that a huge data bank could be created in the future involuntarily. SENATOR GUESS said that is one of her concerns. She also questioned at what point it would become an involuntary act so that a person will not be able to purchase insurance without a DNA test. CHAIR DYSON asked Mr. Mallonee if DNA information is used to prove and disprove paternity. MR. JOHN MALLONEE, testifying on behalf of the Child Support Enforcement Division (CSED), Department of Revenue (DOR), said it is. CHAIR DYSON asked Mr. Mallonee if anything in this legislation would inhibit CSED's present use of DNA. MR. MALLONEE said Version D is written in such a way to protect CSED's right to use DNA to establish paternity. CHAIR DYSON asked Mr. Beheim if he is aware of anything in this legislation that will inhibit crime investigation. MR. CHRIS BEHEIM, Scientific Crime Detection Laboratory, Department of Public Safety (DPS), said he is not; the bill appears to exempt law enforcement from any [restricted use] of DNA in criminal investigation. CHAIR DYSON said he is torn between holding the bill in committee for a week to give Senator Olson and the insurance companies the chance to weigh in with further suggestions or moving it to the Senate Judiciary Committee. SENATOR GUESS stated if the sponsor is willing to work with the insurance company to come up with better language, the Senate Judiciary Committee could address that language. SENATOR GREEN said she would prefer that the sponsor and the insurance representative report back to the Senate HESS Committee but she would not hold it up. SENATOR GUESS moved CSSB 217(HES) and its attached fiscal notes from committee with individual recommendations. CHAIR DYSON announced that without objection, the motion carried.