Legislature(2003 - 2004)
02/25/2004 08:00 AM Senate JUD
* first hearing in first committee of referral
= bill was previously heard/scheduled
= bill was previously heard/scheduled
SB 217-GENETIC PRIVACY SENATOR GENE THERRIAULT moved to adopt Version I of SB 217 as the working document before the committee. CHAIR SEEKINS announced that without objection the motion carried. SENATOR OGAN asked for an explanation of the changes made in Version I. SENATOR DONNY OLSON, sponsor of SB 217, informed members that three changes were made in Version I: · A letter of intent replaces the legislative findings section in the bill · Language that required researchers to get informed consent to use DNA information for research purposes was deleted, because researchers already have such requirements · The definition of "DNA analysis" was refined to eliminate other tests outside of the parameters of genetic studies, for example a family history. SENATOR OLSON added, "We also have protection for the DNA analysis under Section 3 to make sure that the intent is still there under the genetic characteristics." CHAIR SEEKINS asked if this bill protects the privacy of one's DNA analysis, not of one's family history. SENATOR OLSON replied: The DNA specific is what we're trying to go ahead and protect. The integrity of that is the main reason for this legislation. What comes out as far as predisposition for other diseases and other problems that you can get through other means, such as taking a family history and going and taking some of the other blood tests, CBC for sickle cell anemia and things like that, is not part of what's in here. SENATOR OLSON said there are two polarized opinions: one from those who support protection rights and the other from the insurance industry. Version I is his best effort to accommodate those views and tackle the main issues. He pointed out this legislation is a starting point so problems that surface in the future can be dealt with then. CHAIR SEEKINS asked if anything in this bill would preclude someone from using a DNA analysis to contradict family history. SENATOR OLSON said that is correct; SB 217 only gives an individual full control of his DNA information to prevent exploitation. Although the DNA analysis is the property of the individual, the bill contains three exceptions: for criminal identification, paternity disputes and for a medical necessity. With no further questions for Senator Olson, CHAIR SEEKINS took public testimony. MS. ROBBIE MEYER, an attorney for the American Council of Life Insurers (ACLI), a national trade association that represents about 70 percent of the life insurance businesses nationwide, said the ACLI is committed to the principle of genetic privacy but it has concerns with the legislation. Life insurance companies are obligated to keep medical information confidential. However, life insurers need to obtain, retain, use and cautiously share consumers' personal information to perform the very insurance functions that consumers purchase. The ACLI is opposed to SB 217 in its current form and urges that it be amended to exclude life, disability, and long-term care insurers. The ACLI is concerned that this bill could unintentionally interfere or jeopardize its ability to perform critical business functions, such as underwriting and paying claims. MS. MEYER said insurance companies are unique in that they are already subject to a host of federal and state privacy laws and regulations that govern an insurer's ability to obtain, maintain and disclose genetic information. In addition, Alaska's Division of Insurance is in the process of adopting a privacy regulation that will govern all insurers' ability to disclose medical information. It will require insurers to develop extensive security programs to protect the integrity of customer information. Meanwhile, insurers are already subject to a federal privacy bill and, most importantly, all insurers' ability to get any medical information is subject to the Health Insurance Portability and Accountability Act (HIPAA). She cautioned that the exceptions are not as clear as they need to be with respect to retaining DNA samples. SB 217 does not distinguish between the requirements applicable to DNA samples versus the results of DNA analyses. That gives rise to a number of ambiguities with respect to insurers' obligations. The ACLI is concerned about the requirement of specific consent because if anyone has the right to revoke an insurers' ability to retain medical information, insurers' will not be able to continue to underwrite or pay an individual's claims. The ACLI feels the consumer's privacy with respect to life insurance or long-term care insurance is addressed by existing federal law and the new Division of Insurance regulations. She again asked that life, disability and long-term care insurers be exempted from the legislation. CHAIR SEEKINS asked if insurers sell medical information. MS. MEYER said they do not. CHAIR SEEKINS asked if all ACLI members can access each others files. MS. MEYER said ACLI has 400 members so she could not say, but if they do, it is contrary to ACLI policy and federal law. CHAIR SEEKINS asked how those companies can share information if doing so is against the law. MS. MEYER said the HIPAA privacy rule and another federal law require an individual's consent unless the information is being shared to perform business operations, for law enforcement purposes or other specific purposes. TAPE 04-9, SIDE A MS. MEYER added the new regulations of the Division of Insurance track the federal laws. 3AAC 26.680 contains specific provisions with respect to disclosure of medical information. CHAIR SEEKINS asked if ACLI believes this bill is not just a redundancy of other laws but breaks new ground. MS. MEYER said she believes it breaks new ground unintentionally by virtue of the fact that it requires specific consent to get a DNA sample or perform a DNA test. What ACLI finds troublesome is the revocable consent to retain and disclose the information without any business exceptions. She repeated that privacy protections are already in place because insurers are subject to other laws. 9:55 a.m. MS. JENNIFER RUDINGER, Executive Director of the Alaska Civil Liberties Union (AkCLU), told members the AkCLU is opposed to Version I for the following reasons. First, in order to protect an individual's privacy, the bill must contain a comprehensive definition of "genetic characteristic" or "genetic information." The AkLCU presented a written recommendation for that definition in a letter to the committee dated February 24. The definition in the bill is so narrow, just about everything would be covered in the exceptions. Routine diagnostic tests should require informed consent from the subject before the DNA is collected, used, distributed or disclosed. The exemption means that informed consent for genetic testing or retaining information is unnecessary if the genetic information is discovered in the course of a common diagnostic procedure. MS. RUDINGER said the AkCLU believes the bill must include some "teeth" to prevent employers and insurers from collecting genetic information and discriminating against individuals, with certain exceptions. The AkCLU maintains that DNA information is a constitutional privacy right rather than a property right. A privacy right is supreme over a property right. She believes calling human material property creates a slippery slope. She noted the definition of "person" includes a corporate entity but does not speak to a government agency, which the AkCLU believes should also be liable for improper disclosure of genetic information. The AkCLU also believes the law enforcement exemption should allow collection of genetic information only for those activities allowable under Alaska state law. SENATOR OGAN asked Ms. Rudinger: Some of your comments concern me. These ethical questions oppose themselves repeatedly in various contexts, such as whether people should be able to buy and sell human organs, fetuses, babies, etcetera. Of course babies are a person so - but I guess it's a little bit undefined whether or not they're a person in the womb and I guess there's a little bit of an oxymoron there with some of your positions on those issues but are you talking about babies inside or outside the womb? I mean obviously you can't sell a baby - that's slavery but.... MS. RUDINGER replied: ...Senator Ogan, we're talking about human material. We're talking about people, human beings, we're talking about fetuses, we're talking about DNA in the context of this bill. We're talking about human genetic material. MS. RUDINGER said the question involves a philosophical discussion that may be outside the scope of the bill. She noted the bill refers to genetic information as a property right. She said Roe v. Wade was not decided on the basis of property rights, it was based on a constitutional privacy right. She said a constitutional right would give this matter the highest level of protection. CHAIR SEEKINS asked about blood. MS. RUDINGER said people sell blood, eggs and sperm and the AkCLU sees that as a slippery slope that presents a difficult policy question for the legislature. She said the AkCLU is concerned about human material being considered as property that can be bought and sold because of the fear that poor people could be induced or coerced into selling their genetic material. SENATOR FRENCH said he believes the definition of DNA analysis is clear in the bill. He asked if a cholesterol test could be considered as a DNA analysis. SENATOR OLSON replied: To a certain degree, we need to be careful here because a cholesterol test obviously is one thing that gives you certain information. Even though cholesterol itself, if you think of it biochemically, is just an alcohol that's got some sterols related to it, but there is the lipoproteins that are actual carriers of the body fats and so when you start thinking about high density lipoproteins, low density lipoproteins, the LDL [indisc.] low density of proteins, you start getting into a complicated detail there that's certainly not the intent of this bill. But you are correct that in the purest, simplest form, a cholesterol test is not included. SENATOR FRENCH asked if his doctor runs a cholesterol test and gives him the results, the doctor would only be in trouble under this bill if he used that blood to test for genetic characteristics. SENATOR OLSON said that is correct. CHAIR SEEKINS said that chromosomal tests are routine for certain birth defects. He asked if those tests would be prohibited under SB 217. SENATOR OLSON said not at all. He said the intent of the bill is to require informed consent to do any genetic testing. CHAIR SEEKINS asked Senator Olson if he intended to include government agencies in the definition of "person." SENATOR OLSON answered: I wrote the bill, Mr. Chairman, and obviously there is a fair amount of tension between the previous testimony as well as the testimony we just heard. The bill is intended to be exactly the way it is right now because of what's going on - the tension that's there, there has to be a fair amount of give and take. There are details on one side that one wants to go into, details that the other side really wants to get into, but this is the best-crafted bill we have so far. CHAIR SEEKINS said he was trying to determine whether Senator Olson was looking at "the entire universe and not trying to split it, of people or entities that could collect this information and possibly disseminate it." He asked if Senator Olson does not intend to include government agencies into that net. SENATOR OLSON said that is correct. SENATOR THERRIAULT asked if the bill applies to any DNA test required under the criminal statutes. SENATOR OLSON said that is correct. The three exceptions in the bill on page 2 pertain to law enforcement, medical necessity, and paternity determination. CHAIR SEEKINS announced that he would hold SB 217 in committee so that further questions could be answered. He then adjourned the meeting at 10:06 a.m.