Legislature(2003 - 2004)
02/06/2004 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 DONNY OLSON, sponsor of SB 217, gave the following
sponsor statement:
SB 217 has to do with the genetic privacy laws here in
Alaska. I introduced this bill because I think the
reason for introducing such legislation is to get a
handle on this very complicated issue that is related
to genetic privacy. Genetic privacy goes back to the
make-up of every one of us as individuals that goes
back farther than we can remember historically.
We're all familiar with the useful DNA identification
that's been used for law enforcement and paternity
disputes. But there's another side to this new
technology that I feel has a special need for some
type of privacy here in the state of Alaska.
Up until the year 2000, much of this information had
been essentially hidden within our genetic code.
However, with a public consortium and a private
company, they announced that they had cracked the code
and were able to spell out the 3 billion letters of
each genetic genome, the biochemical messages that's
encoded within everyone's DNA.
This is the stepping-stone in deciphering the
blueprint that makes us human. In fact, every human
cell, including hair, blood, fingernails, body
tissues, with the exception of gametocytes [ph], the
sperm and the ovaries in particular, are made up of
the same complete set of our genetic make-up.
Consequently these genetic profiles yield information
that could be used against us.
We certainly have state laws to restrict access to
medical records, however the State of Alaska has yet
to specify any protection of our genetic information.
Medical information is presumed confidential, but with
the increasing capability to store and rapidly
transfer data, this escalates the challenge for
protecting privacy.
At the present time there are no national statutes
regarding the genetic privacy laws, however 15 states
have required informed consent for a third party to
perform or acquire genetic tests to obtain genetic
information. Twenty-three other states require
informed consent to disclose genetic information.
Let me just re-emphasize that this bill is not to
interfere with law enforcement, paternity
determination, or any kind of medical necessity.
Therefore, I've introduced SB 217 to give special
consideration to the advancing biotechnology and to
protect our privacy rights before it gets so
complicated that we can't handle it. Thank you very
much, Mr. Chairman.
CHAIR SEEKINS noted that Senator Ogan had joined the committee
and took questions from committee members.
SENATOR SCOTT OGAN asked who is opposed to SB 217 and whether
any insurance companies want access to genetic information to
determine eligibility for insurance coverage.
SENATOR OLSON said he was not sure that insurance companies are
necessarily opposed to SB 217; however, they would like to amend
it. He said insurance companies realize that technological
advances will require some action and their concerns are valid
and need to be addressed.
SENATOR OGAN told members he believes SB 217 is a good idea
because insurance is based on a pooled risk. He is concerned
that without such legislation, if genetic information became
more readily available, it could be used to discriminate against
people based on predetermined genetic conditions. He pointed out
everyone's family has some predisposition to disease.
SENATOR OLSON said the bottom line of SB 217 is that a person,
and only that person, should have the right to his or her
genetic information, and that person should have to provide
informed consent before that information is disseminated.
CHAIR SEEKINS asked about using genetic information for the
purpose of criminal identification.
SENATOR OLSON said this bill contains exemptions for law
enforcement, paternity determination, and medical necessity.
Therefore, it should have no effect on law enforcement.
CHAIR SEEKINS asked Senator Olson if law enforcement were to
keep a database of genetic information, whether that information
would be shared only within the State of Alaska or whether it
would be shared on a nationwide basis for criminal
identification purposes.
SENATOR OLSON said, as in the case of fingerprint
identification, which is shared nationwide, he anticipates that
genetic information will also eventually be shared.
CHAIR SEEKINS asked Senator Olson if he is suggesting that
genetic information used for law enforcement purposes should be
sequestered within the State of Alaska and not shared on a
national basis.
SENATOR OLSON said the intent of the bill is not to interfere
with law enforcement at all, therefore that issue is beyond the
scope of this legislation.
SENATOR HOLLIS FRENCH said he reviewed the bill with a careful
eye on the law enforcement aspects. He pointed out that the FBI
maintains a nationwide genetic database named CODIS [Combined
DNA Index System] that states have access to when seeking out
crime suspects. He explained:
If a rape is committed in Alaska and we gather
evidence of who the rapist is here and enter that
information into the database and ... if he's arrested
in New York, we can link him up to that through use of
the database but it's carefully maintained for just
that purpose. And somewhere in the materials I noted
the penalties for disclosing that information outside
that database are felony penalties. They're much more
severe than the penalties proposed by this bill. And
I, like Senator Ogan, have concerns about how the
insurance industry can use genetic information about
you in setting rates and so forth.
But I think the one aspect that I was looking at most
closely was whether this would interfere with the
collection of information for sex offenders.... It
does not interfere with it and so I think it's
carefully crafted to allow for the collection for
information in the law enforcement arena but mainly it
just sort of recognizes that Alaska has a
constitutional right to privacy and that before you
disclose someone's genetic information that you get in
a routine medical test to some insurance company or
another health agency or somebody else, that you get
that patient's point blank disclosure. It may be that
the patient wants to disclose it and is interested in
disclosing and he can do that.... But I just think
it's one of those intensely personal pieces of
information that you should have an opportunity to
disclose knowingly, instead of just disclosing at
someone else's desire. I think this bill goes a long
way to getting us on the right track as far as this
information goes.
CHAIR SEEKINS noted his point was to put the fact that the
committee is concerned about the law enforcement aspect on the
record. He then indicated an applicant for an insurance policy
must provide information about his or her family medical history
so that the insurance company can determine the risk factor. He
asked if SB 217 is enacted, whether his insurance company could
ask him to undergo a genetic screening if the company made it
available and, if he signed a waiver, the insurance company
could use that information to determine his insurability.
SENATOR OLSON said it could.
CHAIR SEEKINS asked if anything in SB 217 protects the potential
insured from being forced to provide genetic information to be
considered for a policy. He said he understands Senator Ogan's
concern, yet a family medical history already provides a vague
picture of one's genetic predisposition. He asked Senator Olson
whether he has considered how that scenario should be addressed.
SENATOR OLSON said that question has and needs to be considered.
He maintained that some type of informed consent is required in
Alaska and nationwide to protect one's family medical history
and medical record information. SB 217 is an attempt to provide
the same protection for one's genetic code so that it fits under
[medical record] information. He repeated that one can
voluntarily disclose the information; however his goal is to
make sure the information cannot be used against a person who is
unaware. He explained:
Going on to the next step, where it's going to be a
hammer that's used against you by, as you pointed out,
specifically the insurance company, I think that is
another level of legislation that needs - that could
address it at that time. At this point, all I want to
do is make sure that we have some type of protection
for our genetic code, which is establishing a privacy
or property right so that we have some control as to
who gets that information and that's it.
CHAIR SEEKINS said his concern is that an insurance company
could refuse to consider an applicant without a DNA analysis.
SENATOR FRENCH agreed with Senator Olson that the issue raised
by Chair Seekins should be the subject of a separate bill.
SENATOR OLSON said his legal education told him to [limit the
scope of the bill] at that point.
8:27 a.m.
SENATOR GENE THERRIAULT referred to Section 1 of SB 217, the
findings and purpose section, and noted that when he was the
chair of the House Finance Committee, he routinely took the
findings sections out of bills to keep the statutes streamlined.
He asked Senator Olson if the legal drafter suggested including
a findings section and whether there is any compelling reason to
include it in the bill rather than in a letter of intent.
SENATOR OLSON said because of the complexity of the genetic
information available, the bill needs specific language to
create parameters, "so that we don't have anything that just
kind of blankets over anything because all of a sudden you get
this interpretation that this means this and that means that so
that's the reason I think the drafters put it in."
SENATOR THERRIAULT asked if he requested a findings section.
SENATOR OLSON deferred to his chief of staff.
MR. DAVE GRAY, Chief of Staff to Senator Olson, said he believes
SB 217 is a composite of legislation from other state laws on
this subject.
SENATOR THERRIAULT pointed out his own bill, SB 203, before the
committee today has a shorter findings section, which he plans
to review to see if it is necessary. He repeated that when a
findings section is unnecessary, he believes the legislature
should write a letter of intent to avoid adding pages to the
statutes.
CHAIR SEEKINS noted that he does not intend to pass SB 217 from
committee today so members will have an opportunity to look at
that question.
SENATOR OLSON explained:
The information that's within not just the nucleus of
the cell but within the mitochondria and all those
other things...when you start to go and deal with
things like ribonucleic acid and deoxyribonucleic acid
and all those complexities, you have to have more than
just what the intent is because otherwise the
bill...misses, I think, how deep this really goes
because certainly there are issues - and even within
the definitions, when you're starting to talk
chromosomes and the protein that make up the
chromosomes and the genetic code that's there, that's
why...I thought that we should have the, instead of
just the intent, which is far more efficient - I
understand, but when you start looking deeper and more
and more technology goes forward...this defines in a
tighter way what we're trying to do.
SENATOR THERRIAULT noted the statute should address what is to
be enforced. The findings and intent go into the uncodified
section of the state law for the purpose of clarification.
SENATOR OGAN said the Alaskan Civil Liberties Union (ACLU) is
calling DNA a property right and believes if human genes are
property, poor people could be pressured into selling their
organs or genetic material. He said that raises ethical
questions about whether human material should be devalued to the
point of being marketable commodities. He happens to agree with
the ACLU on that matter. He said the bill refers to genetic
information as a property right and the intent language would
codify it that way in statute. He asked Senator Olson his
feeling on that issue.
SENATOR OLSON said he discussed that question with ACLU
representatives and opted not to change the language in the bill
because he feels comfortable with the property right.
SENATOR OGAN asked Senator Olson, as a medical doctor, whether
he is aware of a split in opinion among the medical community
about classifying genetic information as a property or privacy
right.
SENATOR OLSON replied:
That is a very good question, Senator Ogan....It is
appalling to sometimes see what goes on throughout the
world having, as you pointed out, studied in England,
and studied law in England at Cambridge, the stuff
that you saw out there has some type of negative
visceral reaction to it.... On the other end of the
spectrum...most students in college have had the
opportunity at one time or another to go down to the
local Red Cross and have your blood drawn and get 10
bucks or so, so that's for giving blood, which I don't
have a problem with. So you have that on the other end
of the spectrum. So between the two, ...we all fall as
to what our thoughts are on this ethical issue but I
would say that the intent of this bill, and in the
inclusion of the property right, that it's not for
certainly the sale of organs, tissues....
CHAIR SEEKINS acknowledged that the purpose of SB 217 is to
protect genetic information based on an individual right, not to
determine the ethics of selling body parts.
SENATOR OLSON agreed.
CHAIR SEEKINS took public testimony.
8:45 a.m.
MS. JENNIFER RUDINGER, Executive Director of the Alaska Civil
Liberties Union, said that the right to privacy is among the
strongest guarantees in the Alaska Constitution. The ACLU
appreciates Senator Olson's and the committee's interest in this
important issue. The ACLU made several suggestions in a letter
sent to Senator Olson and feels most strongly about two of those
suggestions. First, the ACLU would like the bill to define
"informed consent" and second, the ACLU would like to see
protections from discrimination included in the bill. She noted
that she respectfully disagrees with Senator French that
including such protections would be outside the scope of the
bill. She pointed out if the state is going to acknowledge this
important privacy right, the bill should contain some "teeth" to
protect that right. She said 46 states have some type of anti-
discrimination measure, mainly related to health insurance
policies. Alaska has two statutes that deal with that
discrimination based on genetic information; however, "genetic
information" is not defined in Alaska statute. Those statutes
say that a health care provider cannot discriminate in terms of
eligibility for health insurance based on genetic information,
among other things. She suggested, "It would be important, I
think, to beef that up a little bit and define genetic
information and then beyond eligibility, protecting people in
terms of their coverage."
MS. RUDINGER noted the other statute prohibits discrimination
based on genetic information in regard to pre-existing
conditions. She said it is important to protect people in both
the health insurance and employment context. It is a common
scenario for an employer to get consent for a genetic test from
an applicant and then to misuse the information when the
employee's disclosure of a genetic condition leads to employment
discrimination. The ACLU wants to see SB 217 protect people in
the two areas of employment and insurance.
CHAIR SEEKINS referred to page 3 of the ACLU letter, which
clarifies that in Alaska statute, a person includes corporations
and all different entities. He then asked Mr. George to testify.
MR. JOHN GEORGE, representing the American Council of Life
Insurers (ACLI), told members the ACLI has been working with
Senator Olson on its concerns with SB 217. The ACLI believes the
basis of the bill is well founded. Because insurers need to
require some medical tests, the ACLI feels the definition of
genetic testing in the bill is overly broad because that
definition would include the test results from, for example, a
cholesterol test and a serum iron test. Insurance companies use
tests that are widely accepted, cheap, and reliable. The type of
genetic testing that Senator Olson intends to protect does not
fit that description.
MR. GEORGE informed members that he provided a proposed
amendment to Senator Olson that contains a new definition. He
said he would prefer to work with Senator Olson to see if they
can agree on a new definition. He then told members that ACLI's
second concern regards adverse selection. He explained that if
an insured knows he or she has a medical condition and does not
disclose that to the insurance company, there is the possibility
of adverse selection. If a person knows that he or she is likely
to die in a year from now, that person is likely to buy more
life insurance. Insurance companies believe that if the insured
knows something about a medical condition beforehand, that
information should be disclosed to the insurance company for
underwriting purposes.
He informed members that applicants sign a disclosure form for
medical information when applying for insurance. He also noted a
good portion of the Division of Insurance's privacy regulations
have to do with disclosure of health information and what
insurance companies can do with that information. Insurance
companies are also subject to the Health Insurance Portability
and Accountability Act (HIPAA) regulations, which address
authorization by an applicant for disclosure of medical
information. SB 217 would require a separate authorization for
disclosure of genetic information. He noted if an insurance
company does business in 50 states and each state has a
different requirement, it would have to provide a different form
in each state and deal with insureds that move from state to
state. The ACLI believes the authorization forms it uses now
comply with HIPAA and are adequate for people who voluntarily
apply for insurance.
He said once an insurance company has information, it is
obligated to maintain those records. SB 217 originally allowed a
person to withdraw his or her information, however the insurance
company would be required to maintain the file. Insurance
companies are subject to audit by the Division of Insurance and
disclose client files when selling the company or applying for
reinsurance.
8:56 a.m.
CHAIR SEEKINS asked if he were to voluntarily get a DNA test to
learn how to live a better life, whether he would be obligated
to share the information with an insurance company.
MR. GEORGE said if an insurance company asked health related
questions, he would be obligated to answer them. He asked Chair
Seekins if he knew he had a disease that was diagnosed using a
non-genetic type test, he would feel obligated to disclose it.
CHAIR SEEKINS said he would feel obligated to disclose a pre-
existing condition but he was referring to a predisposition.
MR. GEORGE said the definition he plans to address with Senator
Olson addresses a predisposition and a pre-existing condition.
CHAIR SEEKINS asked if once the insurance company has that
information, it becomes the insurance company's property and can
be sold and shared.
MR. GEORGE said he was not sure how to answer that question. He
pointed out an insurance company would be prohibited from
selling the information. However, if he bought a life insurance
policy from Company A and that company decided to get out of the
life insurance business and sell to Company B, Company B would
want to review the underwriting files to determine the risk.
CHAIR SEEKINS indicated the information appears to be a saleable
commodity.
MR. GEORGE said ownership of the policy is with the policyholder
but the insurance company offering that policy can sell the book
of business. In addition, if a company wants to reinsure a
policy, the reinsurance company will want to look at that file.
He noted the privacy regulations that the Division of Insurance
is in the process of adopting contain specific guidelines about
what is permissible and what is not. Medical information is not
public information and is not available on the Internet.
CHAIR SEEKINS asked if that information is put into a database
that is available to other members of the insurance industry,
either on a membership or fee basis.
MR. GEORGE said it is not.
CHAIR SEEKINS asked, in that case, if he gave the information to
Company A, it would not be put into a database that is
accessible by Company B.
MR. GEORGE replied:
Senator, my understanding is that if we're talking
about a national database that someone can subscribe
to and just access, the answer is absolutely not. I
gave the example of Company A and B and, in that case,
it would be because there is a business relationship
and a reason for doing that. Again, what are they
doing with the information? Are they using it for a
business purpose to decide whether or not to accept
the business as opposed to selling it to your credit
card company or to your bank or to a prescription drug
company?
CHAIR SEEKINS said it seems that the intent of SB 217 is to
establish a level of privacy on an individual relationship
basis. He asked if when he shares information with Company A,
whether, without his knowledge or consent, it is a shareable
commodity with another entity. He thought that is what Senator
Olson was trying to protect. He said he wants to know what
actually happens to the data once it is shared with Company A
and asked Mr. George to get back to him with a definitive
answer.
MR. GEORGE said he feels absolutely safe in saying the
information is not saleable or shareable other than for the
specific permissive uses listed in the Division of Insurance's
regulations for claims adjusting and other purposes. It is not
available for any purpose not related to that insurance policy.
CHAIR SEEKINS noted with no further testimony, he would hold the
bill in committee and announced a 5-minute recess.
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