60 minutes rewind
when we ask the question whose life is it anyway we're not kidding the announcement
a week ago of the first analysis of the human genome project the blueprint that defines the
human body truly raises that question it also raises the possibility of preventing or curing
a whole host of diseases the race to identify our genetic makeup was equal only to the rush by
the biotech industry to patent those genes that's right patent them just like thomas edison's light
bulb at least a thousand human genes have already been patented and thousands more are pending which
means that chances are your genetic structure and mind our most private property may well belong
to someone else by all rights steve crone should be dead a gay man who was regularly exposed to
the aids virus over a long period there were too many people who died i was too exposed
and i had lost about 70 to 80 friends you know i the thought was i'd be dead in a year two years
he felt like a walking miracle every time he was tested for hiv more than 20 tests he came
up negative and was finally convinced he carried some kind of immunity so he offered himself up to
the aaron diamond aids research center in new york where researchers agreed to study it when
high doses of the aids virus failed to infect samples of crohn's blood doctors were stunned
that surprised them so then that established the fact that there was some natural resistance that
they weren't aware of and then that in turn led to the discovery of the genetic reason for that
the reason was a genetic mutation which produced cells that would not let the aids virus enter his
system it was a genetic oddity he soon learned he shared with another walking miracle eric fuchs
i continued to have tests and they all came back negative they then found out that it was a genetic
defect is the word so it's a genetic i'm defected the gene defect was a promising discovery for the
research lab something that might one day lead to a way of combating aids the aaron diamond center
filed for a patent on the gene but neither crone nor fuchs were listed as co-owners of their own
genetic material after you know taking our blood and all that they broke off relationships with
us but the fact is that without your blood that is correct without my blood and without steve's
blood they would not have had this discovery in a letter to 60 minutes the aaron diamond center
claims that the gene patent has not resulted in any financial gain for the non-profit organization
they state that fuchs and crone cannot be considered as co-owners as they did not contribute
intellectually to the discovery of the gene mutation but that doesn't satisfy eric fuchs it
was my idea that i was immune it wasn't their idea you know do i want to share in the patent yes i do
while technology takes us into a brave new world the old world's laws are racing to catch up
patents used to be reserved for inventions like the light bulb or the cotton gin but in 1980 the
supreme court ruled that a life form a genetically altered bacterium used in oil spills could be
patented as biotech companies began looking into gene research that ruling became their license
to patent human genes and the gold rush was on doctors are searching the globe looking at
patients as potential treasure troves because they can use your blood to find a very lucrative gene
lori andrews is an attorney who is also an advisor to congress on biotech issues she says that
patents were never intended for products of nature like jeans which in her mind are hardly inventions
the u.s constitution established the patent system to reward inventors the idea that genes could be
private property instead of public knowledge seemed absurd and yet that's exactly the point
we're in now when the late jonas salk uh came out with the polio vaccine and he was asked
why he didn't patent it he said quite famously could you patent the sun could you patent son
nevertheless all these years later the salk institute holds hundreds of patents how did we get
from that altruistic approach to this i think that greed has become a cultural value in health care
and we are seeing a big change i think we need to go back to that time that's unlikely in this age
when one gene was responsible for the development of epogen a drug used in kidney treatment
that's worth more than a billion dollars in annual sales for its manufacturer but
even in areas that will not be so profitable the genetic gold rush goes on miss andrew's clients
dan and debbie greenberg lost two children to a rare degenerative brain disorder called cannavan's
disease when our children were born basically nobody knew anything about cannavans disease
and there was really no research whatsoever going on because nobody knew where to start researching
since cannabin's occurs only when both parents are carriers of a particular gene
the greenbergs knew that isolating the gene might one day lead to a prevention or cure they urged a
geneticist dr ruben matalon to begin research into cannabin's disease we initially provided
blood and urine samples from our two children and he took multiple samples when he felt like he was
on to something and beyond that we put them in touch with further families yet
the greenbergs and other families also provided seed money for early research
and the project was eventually financed by miami children's hospital after a few years dr matalon
discovered the canopy gene it was a wonderful accomplishment do you think without your help
and the help of other families that he and miami children's could have proceeded with their work
absolutely not but greenberg was shocked to learn that miami children's had patented the
gene and was charging a royalty every time a cannabin screening was performed anywhere
the greenbergs and other families are suing the hospital on grounds of breach of informed consent
we never knew they had even applied for a patent
nobody ever asked us if we would consent to that nor did they ever suggest that was their intent
the whole premise on which all of this research was done was based on doing something good for
mankind not for making money in a letter to 60 minutes miami children's wrote it's
highly unlikely the hospital will ever recoup the millions and millions it's spent on this research
that now offers couples a method of determining the probability of having a child with cannabints
patent protection says todd dickinson former head of the u.s patent office is the engine that drives
great discoveries it was costly to develop and they're recouping their costs and the incentive
to do even the threshold research would not be there if the patent system was in place to provide
the the kind of protection and the nurturing that new inventions need
invention is surely the wrong word here nobody invented that particular chemical process
that takes place in your genes or mine what they did was discover the chemical composition
of that gene which was not known before and as they discover those chemical compositions
then they are uh available for patent protection but laurie andrews says that scientists were doing
pure research long before there were any economic incentives and that gene patenting has changed
medicine forever you can see how this is turning scientific research on its head i mean usually
we share scientific knowledge when we find it so that many many people are working on a cure
that's not the case now with these overreaching gene patents where whoever identifies the gene
to begin with controls any research on it which may make perfect economic sense but in the real
world the consequences could be tragic could affect the health of every woman in the world
at the university of pennsylvania dr hague kazazian and dr arupa ganguly
were testing women who might have a mutated gene that predisposes them to breast cancer
i was naive i didn't realize that that there was a possibility we'd be shut down on this
and you're doing some promising research for you yes we were offering clinical testing and then
we were also going on uh beyond clinical testing and doing some research work on it and then you
abruptly stopped on both cards why because it was viewed as an infringement on the patents owned by
myriad myriad as in myriad genetics a salt lake city biotechnology company which owns the patent
on the two known breast cancer genes myriad sent the upend lab a cease and desist letter when they
learned that they were performing diagnostic tests using their genes without a licensing agreement
there really wasn't much we could do we talked to the um to our university lawyers they said really
we can't fight this they have the law on their side they own an equation or a formula
or something they they own the sequence they own the nucleotide sequence the building blocks of
the gene so the only place in the in the world essentially now that you can have
screening of the gene and and testing of that gene is myriad corporation
genetics decline to be interviewed but in the past they defended their right to exercise control
over the use of their patent which means myriad can have a financial interest in
every breast cancer test that uses their gene the story will continue after this
what is the effect of myriad owning exclusively the rights to test for the breast cancer gene
what and in terms of of the cost for example of the test they can name their prices right the
fee for looking at my gene in my body is twenty five hundred and eighty dollars to myriad genetics
my doctor cannot look in my own body at my own breast cancer gene without paying a royalty to
myriad genetics that's absurd why should something in my body belong essentially to that company that
fee is not just a royalty fee that fee is the cost of the test todd dickinson says the patent office
has long held the view that incentives to research must be maintained we charge for a lot of things
that save people's lives pharmaceuticals that save people's lives have a price associated with
them this isn't a pharmaceutical this is merely a test this is something that tells you puts you on
the alert to a predisposition right the work that went into developing that test was substantial and
i think that those institutions believe that they have the need to recoup some of that investment
in the cost but the cost of the consumer could well rise beyond the reach of most people
one day it might be possible to be tested for hundreds of genetic diseases which could
cost thousands and thousands in royalties and which could make patients hostage to patents
it's a crisis in health care now because so much is going to be dependent on
genetics yeah this is so naive a question does anyone come along to such a quote
unquote doctor scientist researcher and say this is wrong i mean you're so right about that
but they say and i'm appalled since i'm a lawyer they say but it's legal