Legislature(2003 - 2004)
01/28/2004 01:35 PM Senate HES
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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
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.
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