(All Things Considered (NPR))


Two Marines have filed a civil suit against the Department of Defenseto 
try to make it optional to give blood samples for DNA cataloging. 
Ethicists say this case is only the beginning of a larger debate.

NOAH ADAMS, Host:  It's All Things Considered, I'm Noah Adams.

LINDA WERTHEIMER, Host:  And I'm Linda Wertheimer.  Two Marines in 
Hawaii have filed a lawsuit that could have a profound influence on 
the way our society handles genetic information.  The Marines are 
refusing to provide blood samples for the Defense Department's DNA 
databank, a collection of DNA samples that are to be used to identify 
the remains of soldiers.  

    The Marines say they're concerned that genetic information about 
them will be used for other purposes.  For example, that it will be 
passed on to insurance companies which could some day use it to deny 
them health benefits.  As NPR's Joe Palca reports, this lawsuit has 
raise issues about genetic privacy that will become increasingly important 
as genetic diagnosis and therapy become more routine.

JOE PALCA:  Identifying soldiers who fall in battle is a centuries-
old tradition.  Most of the time, surviving comrades can do the job 
but, when they can't, it falls to people like Lieutenant Colonel Victor 
Wieden [sp] of the Armed Forces Institute of Pathology.

Lt. Col. VICTOR WIEDEN, Armed Forces Institute of Pathology:  We like 
to think that part of the cost of doing business for the military 
is the identification of the war dead.  It's not something people 
like to think about but, in our society, it's very clear that it's 
a mandate to try to identify and return the remains to the families.

JOE PALCA:  The military has adopted several strategies to help Wieden 
and his colleagues.  In World War I, soldiers began wearing metal 
dog tags to help show who was who and more recently the services have 
begun using fingerprints and dental records to make positive I.D.s. 
 

    But Wieden says that's not always enough.  On a recent visit to 
his offices just outside Washington, D.C., Wieden showed a grisly 
example why.

Lt. Col. VICTOR WIEDEN:  This is a body.  There is no head, there'
s no legs.  You can see the arm but there's no fingertips.  This is 
a body I, as a medical examiner, had to identify.  It came from a 
crash just across the Canadian border from a tanker out of the Loring 
Air Force Base.  And that's substantially a body and I have an obligation 
to make an identification and have it returned to the family.  There'
s pounds of flesh - a lot of DNA - but no teeth or fingerprints.  
And this is a far more common scenario than people have any idea.

JOE PALCA:  Since no two DNA samples are identical, someone's DNA 
becomes the ultimate identifier.  Most of the time, if you don't have 
a DNA sample from someone you want to identify, you can still make 
a positive identification using DNA from a close relative.  But sometimes 
family members can't be found and sometimes there are unexpected problems 
with going to a family member.  It's not so uncommon to take a sample 
from someone who thought he was a parent and find out you've not only 
got a problem with identification but with paternity as well.  So 
Wieden says the most straightforward thing to do is to make everyone 
in the military give a DNA sample as a reference.  In 1991 the DOD 
decided to do that, creating the DNA Specimen Repository.  The specimen 
consists of a few drops of blood taken from a finger and smeared on 
a card and a clump of cells from the inside of the mouth - a simple 
procedure that only requires rubbing the inside of the cheek with 
a Q-Tip swab.

JIM STAVINOLA, U.S. Army DNA Specimen Repository:  This is where the 
samples are brought in, they're inspected to insure that there's blood 
on the sample and that there's writing on the sample.

JOE PALCA:  Jim Staminola [sp] is standing in a large room in a warehouse 
a few miles from Weiden's office.  This is the physical home of the 
DNA databank.  Every day, 4-5,000 packets containing blood samples 
and cheek swabs arrive from military bases around the world.  Personal 
data for each sample are entered into a computer and the cards with 
the blood stains are vacuum sealed and stored in freezers.  Ultimately,
 the databank will catalogue something like three and a half million 
samples for everyone on active duty or in the Reserves.  Right now 
Stavinola says they are only about a third of the way there but that'
s still a lot of samples.  Stavinola steps into another room in the 
warehouse where high shelves hold the test tubes containing the cheek 
swabs.  Each shelf is three feet long and 18 inches deep.

JIM STAVINOLA:  We can put 16,500 samples on 12 foot high shelving. 
 On 16 foot high shelving you can put 22,500.  

JOE PALCA:  So, from this door here to the other wall-

JIM STAVINOLA:  Which is approximately 60 feet, is 1,100,000 specimens. 
 

JOE PALCA:  Under other circumstances, one of those samples would 
belong to 25 year-old Marine Corporal Joe Vlakovsky [sp].  Last January,
 Vlakovsky was ordered to give a blood sample and cheek swab for storage 
in one of Jim Stavinola's shelves.  He refused.  He wanted to know 
more about how the samples would be used.  

    `Remains Identification,' he was told.

    `Anything else,' he asked?

    The answers were fuzzy.  `Nothing planned,' his superiors told 
him but they wouldn't go farther than that.  So Vlakovsky refused 
to give a DNA sample and he still refuses.

Cpl. JOE VLAKOVSKY:  Well, I'm just concerned that, with the samples 
and with no regulations in place protecting them from various abuses 
that can occur, that there is the possibility that exists that someone 
will get their hands on them and do something that, maybe, I would 
not approve of.

JOE PALCA:  Twenty-one year-old Lance Corporal John Mayfield is in 
Vlakovsky's unit and shares his concerns.  Last January he, too, refused 
to give a DNA sample.  The pair faced court martial for refusing orders 
so they got a lawyer to defend them.  But Mayfield says they also 
wanted to challenge the military's right to collect a DNA sample without 
their consent so they filed a civil suit against the Defense Department.

Lance Cpl. JOHN MAYFIELD:  The lawsuit came about, I guess, because 
we saw it as an opportunity to change the policy because we have seen 
it affect a lot of co-workers and there have been many people, quite 
regularly, asking us about the case because they're equally concerned.

JOE PALCA:  These are colleagues in the military?

Lance Cpl. JOHN MAYFIELD:  Many of them, yes.

JOE PALCA:  The major concerns are that the DNA samples will be used 
for something other than identifying dead soldiers.  What if the military 
were to share this genetic information with health insurance companies 
or law enforcement agencies or use it to prevent soldiers from taking 
certain jobs.  

    Genetic discrimination has occurred in the military - once upon 
a time the Air Force would not let people who carried the gene for 
sickle cell anemia be pilots even though carriers don't get sick. 
 The Air Force has since abandoned that policy.  

    Vlakovsky says, at first, he wasn't even aware of that sort of 
potential misuse of genetic information. 

Cpl. JOE VLAKOVSKY:  But then, as myself and John continued to do 
some of our personal research on it and find some more information,
 it just continually brought up more and more worries and, I guess,
 solidified our position. 

JOE PALCA:  How far are you willing to go with your objections?  I 
mean, it could end your military career, obviously. 

Cpl. JOE VLAKOVSKY:  That's understood.  I think both of us agreed 
back when we made that decision last January that we were prepared 
to go as far with it as we had to to get done what we thought necessary 
- which was some changes implemented and to make it the right of the 
individual to give the blood or not.

JOE PALCA:  Vlakovsky and Mayfield's lawsuit may well be a harbinger 
of battles that will be waged across government and private industry. 
 Personal medical information has traditionally been held confidential 
and protected from access by just anyone.  But, as researchers find 
more genes that predispose people to diseases like cancer and Alzheimer'
s, genetic information will provide a different kind of information 
from, say, someone's blood pressure or cholesterol level.  

    George Annis [sp] is a lawyer and medical ethicist at Boston University.

GEORGE ANNIS, Boston University:  There's three unique characteristics 
of genetic information that other medical information doesn't share 
- at least doesn't share to this extent.  The first is that it gives 
you what I call a probabilistic future diary - it tells you what your 
likely medical future will be, if you live long enough and don't get 
hit by a train, in terms of whether you're going to develop certain 
genetic diseases.

    Secondly- and it's just as private as a diary, I think, in that 
sense.

    Secondly, it tells you information not just about you but information 
about your family members as well, especially your siblings, your 
parents and your children.  

    And thirdly there's been a, kind of, a terrible history of abuse 
and discrimination based on genetic information.  So, for all these 
three reasons, it is though by me and others that genetic information 
is uniquely private and should be treated as uniquely private.

JOE PALCA:  Annis has written model legislation that spells out the 
extremely restricted conditions under which genetic information could 
be divulged and there are several bills being considered by Congress 
that would include some of the protections Annis is recommending. 
 

    Annis says that maintaining DNA repositories for remains identification 
purposes only is legitimate but he's not convinced the Defense Department 
has gone far enough to assure people that its DNA repository will 
only be used that way.  Annis says future genetic research may place 
tempting genetic tools at the military's disposal.  

GEORGE ANNIS:  I doubt there's a gay gene but let's suppose there 
is a gay gene or genes, at least, to predispose to gayness.  A future 
army may want to screen people in the Army to try to find that gene. 
 Or, if there's a gene that predisposes even for early Alzheimer's,
 you may not want to promote an officer who has the early Alzheimer'
s gene, for example, and you may want to screen your genes for that. 
 

    You could think of legitimate reasons - the Army might want to 
look for genetic conditions.

JOE PALCA:  But Annis says there needs to be a public discussion before 
such uses of genetic information are considered.  Lieutenant Colonel 
Wieden says the Defense Department is aware of the need to respect 
soldier's genetic privacy and he says they've taken extraordinary 
precautions to protect the information in the DNA repository.  What'
s more, Wieden says his databank has only one purpose.  

Lt. Col. VICTOR WIEDEN:  The sole reason for the creation of the Department 
of Defense DNA Specimen Repository was for human remains identification. 
 The speculation that this repository might be used for something 
else is just that, it's speculation.  We are not using this repository 
for anything else at this point in time.

GEORGE ANNIS:  I believe it when they say they only want to use it 
for identification but I think they should promulgate an official 
policy and say that they can only use it for identification and then 
I wouldn't have any trouble with it.

JOE PALCA:  And, so far, George Annis says so far the Defense Department 
hasn't been willing to do that.  Congressman Joseph Kennedy of Massachusetts 
has introduced a bill that would make such a policy law.  Corporal 
Joe Vlakovsky says even a law or an official military policy specifically 
limiting the use of information in the DNA databank to identifying 
dead bodies isn't enough.

Cpl. JOE VLAKOVSKY:  I think, as a general rule, that's a good way 
to go but from a personal standpoint I still don't want to give the 
sample.  I just feel that having the sample out of my hands is, basically,
 giving them some sort of control that I don't want them to have.

JOE PALCA:  Few people have given as much thought to the implications 
of giving a DNA sample as Vlakovsky has.  But medical ethicists have 
begun to give the issue a lot of thought and they are sure that a 
reasonable number of people will feel the way Joe Vlakovsky does about 
trying to keep control over their genetic information.  While some 
favor an outright ban on collecting genetic information, others say 
the information in our genes is likely to help doctors treat us for 
a variety of diseases and it would be a shame to abandon it.  Ethicists 
like George Annis would argue that protecting its confidentiality 
would go a long way to relieving the concerns of Vlakovsky and others 
about its potential for misuse.

    This is Joe Palka, in Washington.



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