Legislature(2003 - 2004)
02/25/2004 08:00 AM Senate JUD
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* first hearing in first committee of referral
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= bill was previously heard/scheduled
+ teleconferenced
= 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.
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