Wednesday, December 31, 2008

1st january 09

well well its such an interesting debate ...intellectual property rights, and what can and cant be patented..interesting that genetic maps come under intellectual property as well.. it infers that all this is merely speculation...

and then there is always jung and the mass consiousness and all that..... which from my experience is defintely true...... do we find ideas or do they find us?

i`m really glad i am doing this, people tend toward black and white on these extremely complex issues, i know how i stand and nobody should be able to buy my dna or yours... or the dna of a tomato or a pumpkin etc but i would like to be more articulate.. and i do think there is debate for protection or `ownership of' intellectual property as is complicated

the molecular structure of the earth and everything that lives on it, to me, should not be able to be patented, i think its a crime.... a legal crime....and i think its unfortunate that all of this has come about... i guess if these things were purchasable for specific reasons, and had some kind of laws around them to protect the patent purchase from profit making the circling hungry sharks that swim about would not be so keen on the food

some of the things i have read in regards to all this have made me feel very sad for the state of the nation, and the state of us especially, i would say in the west but i think its arrogant and ignorant to assume some kind of monopoly on a generic emotion such as greed.... that empty void that needs to be constantly filled

through my research i have also found it is now impossible for any of us to own all of our dna, as some of the patents for specific dna have already been bought by various companies (who i will list later)

it is also sad that people have used this as a means of exploiting other peoples work as in the case of monsanto`s...christ how does anyone get away with that shit? its outrageous... perhaps we are just spoilt with concept of rights...dumbed and dulled...its an odd thing if we just didnt buy into it would it go away? because resistance does tend to breed resistance....

and i guess in some ways this does tie into the whole ethics thing of which comes first, principles or people?
personally i would like to say people people people... but that is a hard road isnt it!? its as hard a road and part of the road of non-resistence, or should i say passive resistance...which is a very hard road....

i will also incorporate into this work passive and aggressive did with all my work for the last couple of years, the rise of science and consumerism, world war 2, nazi germany and of course ghandi... nationalism and all that.... the desire for perfection etc etc, all of these things seem to on some level meet,.... anyway sebastion and orlando would like to walk now so be off for a mo or a tick or whatever

Sunday, December 28, 2008

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The Human Genome And Gene Mapping
Author: Janet M. Cowan, Ph.D.
Color Key
Important key words or phrases.
Important concepts or main ideas.
The Human Genome And Gene Mapping

Jorde, Carey, Bamshad & White: Medical Genetics, 3rd edition, C.V. Mosby Publishing, 2005.

* Structure of the Human Genome Chapter 2, 17-22
* Detection of variation at the DNA level Chapter 3, 43-55
* Gene Mapping and cloning Chapter 8, 160-189


The student will:

* Understand the different types of genetic variation.
* Be able to distinguish between genetic mapping and physical mapping.
* Understand the basic concept of genetic linkage analysis
* Understand different gene mapping techniques .

The Human Genome Project

* Goal is/was determination of the complete sequence of the human genome
o genes which define our phenotype
o genes whose alteration leads to disease
* Characterization of single gene disorders, multigene disorders
* 3 x 109 bp (<5% encodes genes)
* 24 different chromosomes
* First draft of the sequence of human genome published in 2000


* Genome maps are detailed constructs of the order and/or position of genetic markers and DNA sequence.
* Maps are of two types:
o Genetic maps - use recombination frequencies of markers at meiosis
o Physical maps - identify exact location of DNA sequence in the genome

Human Genome Mapping

* Individual chromosomes isolated, and used to prepare genomic DNA libraries in yeast artificial chromosomes
* Unusual world-wide collaboration
* New technology of robotic production lines (PCR tests)
* Information shared on web (900 printed pages)

Genetic Markers

* Freely recombine during meiosis unless they are physically close together
* Linked markers usually inherited as a set

Genetic Maps

Genetic maps dependent on linkage analysis and recombination frequency:

* Units of scale
o Human = centimorgan (cM)
o 1 cM = recombination fraction of 1/100 meioses
o Equivalent to 0.7 - 1 Mb of DNA

Definitive genetic map

* Assembled by Genethon laboratory (Paris)
* Used microsatellite markers

Map Your Disease

* Find a large family with a clearly defined disease
* Using PCR check with 400 primers pairs, at about 11 cM intervals
* Automation
* Markers used in mapping
* Restriction fragment polymorphisms (RFLP)
* Minisatellites
* Microsatellites


* At least one marker should co-segregate with disease
* Go to Human Genome Project to find linked loci
* Fill in the gaps
* Scan the human genome database for sequences associated with active genes in your marker

Proving You Have the Gene

* Transgenic mouse - prove gene has biological function related to disease
* Knockout mouse - inactivate gene and show disease develops
Linkage, Prediction, Recombination

Linkage Calculation

* LOD score = log of the odds score = statistical estimate of whether two loci are likely to lie near each other on a chromosome
* If they are they are likely to be inherited together
* LOD score > 3 generally taken to indicate that the two loci are close (1 to 1,000)
* Determine recombination frequencies - can range from 0% (no recombination) to 50% (crossing over in half of meioses)
* 50% recombination frequency would be observed from two markers on different chromosomes
* CRIPT> Not calculated by hand...


* Probability found by multiplying together the probabilities of each event happening independently
* For instance: I need to be at work by 8 AM. For this to happen I have to set my alarm clock, I have to be lucky with traffic, and I have to find a parking space
* Probability (work at 8) = Probability (set alarm) x Probability (no traffic) x Probability (parking space)

Physical Maps

* Plot the actual location of DNA sequences on chromosomes
* Units of scale = base pairs
* Clone maps
* Radiation hybrid maps - radiation breaks chromosomes
* Fluorescent in situ hybridization (FISH)
* Karyotype changes

Useful Terms

* Genetic markers - provide the landmarks to plot positions within the genomic landscape
* May be associated with phenotypic characteristics such as inherited diseases
* Many not associated yet with observable phenotype = DNA sequence polymorphisms

Hapmap (Haplotype Map)
CEPH Donors

* Reconsent from living donors
* Local IRB gave permission to use samples from deceased donors
* No names or other identifying information
* No medical information
* Only genotype information and sex released on Internet
* More samples collected than used

Array Technology

* Possible because of new technology
* Allows better resolution than comparative genomic hybridization (CGH) on chromosomes

Array Analysis

* Uses include gene expression, CGH, SNP analysis, protein analysis
* Differences lie in material on array (DNA, cDNA, oligonucleotides, antibodies, proteins)
* Choice of targets on array
* Sensitivity - minimum region
* Mosaics may not be detected
* DNA - can do multiple tests in one experiment
* Can compare multiple different individuals at multiple different targets


* Human Genome Project resulted in explosion of new technology
* Raised ethical questions (who owns the genome?)
* Will enable faster identification of disease related genes
* May enable personalized treatments

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Who Owns the Human Genome?
Questions are mounting about whether anyone can "own" the human genome--whether it
can be copyrighted or patented and what e2 ct that might have on a j deral collaboration
This is the first of two articles exploring
current developments in the initiative to map
and sequence the human genome. The second
will fieus on organization and funding.
H ARVARD biologist Walter Gilbert
did not attend a recent workshop
on mapping and sequencing the
human genome, but he was clearly on everyone's
mind. As the Department of Energy
(DOE) and the National Institutes of
Health (NIH) continue jockeying over
which agency should lead the federal effort
and how it should be structured, a new set
of questions has emerged. What will be the
effect of this proposed project--the biggest
yet undertaken in biology--on open scientific
communication? Will researchers hold
close their results because the stakes--both
financial and professional--are so high,
thereby slowing the search for medically
important genes?
Can anyone "own" the human genome? If
a company sequences a gene or chromosome,
does it have proprietary control? And
specifically, can Gilbert really copyright the
human DNA sequence, as he says he plans
to do with his new company, Genome Corporation.
"There is scientific apprehension that materials
won't be available, that researchers
will have to repeat work, and that the government
will have to keep fi.mding duplicative
work," said Robert Cook-Deegan, an
analyst at the Office of Technology Assessment
(OTA) who organized the workshop
as part of the project he is directing on the
human genome initiative.*
Some say the effects of the proposed project
are already being felt throughout the
genetics community. "Until now U.S. researchers
have been generous in exchanging
clones," said C. Thomas Caskey of Baylor
College. "Every molecular biologist in the
United States knows the term 'cloning by
phone.' But now I'm definitely detecting a
tightening of this attitude as I call my
* The workshop, "Issues of Collaboration for Human
Genome Projects," was held 26 June in Washington,
The workshop, which was cosponsored
by OTA and the Howard Hughes Medical
Institute, focused on barriers to collaboration
in a large federal project. The Hughes
Institute, a nonprofit organization, is now
spending about $1.5 million on research
related to mapping and sequencing. In the
free-ranging discussion, which included key
researchers, ethicists, lawyers, and representatives
from industry and public and nonprofit
agencies, there were clearly more
questions than answers. But the general
consensus seemed to be that problems will
worsen unless mechanisms are set up in
advance to ensure the open exchange of
information and materials.
The questions raised at the workshop are
not particularly new, now that the majority
of the nation's leading molecular biologists
have corporate ties of some kind. Yet they
seem particularly worrisome in regard to
efforts to map and sequence the human
genome. As Leroy Hood, a Caltech biologist
who is one of the leaders in developing
automated technologies for mapping and
sequencing, told Science, "Some people are
willing to share information and some are
not. That hasn't changed over the past 10
years. What could affect it is if you can
copyright or patent sequence data."
Unlike the rest of biotechnology, in
which patenting engineered microbes and
animals is becoming commonplace, there
seems to be something inherendy different--
and emotionally charged--about anyone
laying claim to the human genome, or
even a chunk of it. "Being able to copyright
the sequence would make me very uncomfortable,"
said Frank Ruddle of Yale. And
Caskey asked if there is a precedent for
saying, "This information is so important
that it cannot be proprietary. This is the first
time we'll ever get this information on
man---can we make a special case?"
In addition to these issues surrounding
ownership of the genome, other things set
this project apart from the rest of biology
and fuel concerns about scientific exchange.
One is the vast clinical applications and
huge profits expected to emerge from such a
project, which may exacerbate tendencies to
withhold results. Mapping the genome will
enable investigators to pinpoint the exact
location of genes associated with the 3500
or so known inherited disorders and may
also provide insight into numerous diseases,
including cancer, diabetes, and heart disease,
in which genetic predisposition plays a role.
Working out the exact nucleotide sequence
of these genes and the regions that control
their expression may reveal techniques for
early diagnosis or perhaps treatment.
"Working out the sequence and mapping
genes to certain areas has a ~r~eal monetary
value," said Ruddle. "It can be sold. That's
all to the good, it gives people an incentive
to pursue it. But at the same time, not all
will be given access, some may be locked
With a project of such immense potential,
George Cahill of the Hughes Institute
summed up succinctly, "we have to look at
the bucks to ethics ratio."
This undertaking also differs in intent
from most biological projects. "The goal of
this project is to create a national resource of
information on the human genome--avail-
358 SCIENCE, VOL. 2.,37
able to all," as Cook-Deegan describes.
"That implies a type of data sharing that
might be different from normal science. If
we have a concerted effort, then we need
people to talk to each other."
As yet there is no centralized, interagency
human genome project--DOE and NIH are
pursuing their own initiatives--but there is
general agreement on how to proceed. The
first stage would be to develop a physical
map of the genome--a set of overlapping
DNA fragments that span the entire genome--
and then to locate genes and markers
on it. (The latter process is often referred
to as developing a genetic map.) This would
be accompanied by a simultaneous effort to
develop technologies for rapid mapping,
cloning, and sequencing. The second stage,
which might follow in 5 years, would be to
work out the nucleotide sequence of regions
of interest, if not the entire genome. As
sequence data and materials accumulate,
they would be put into a repository where
they would be available to other researchers.
Charles DeLisi of DOE, who instigated
the entire effort a couple of years ago, uses
the analogy of an accelerator. The goal, he
says, is not to answer fundamental questions
but to develop a tool to make that work
possible. And if this massive and expensive
project is to be completed in a reasonable
time, new information and methods must be
rapidly disseminated among the numerous
"In the normal scientific mode the researcher
is under no obligation to send out
materials or information before he has published,"
Cook-Deegan says. "But in this
case, the agencies might want something
different, for investigators to be more
DOE and NIH have begun talking about
how to set up a database and repository, but
numerous nitty-gritty questions concerning
access, intellectual property protection, and
how to ensure that collaborators enter their
data promptly remain to be addressed, he
These questions will be central not just to
the human genome project but to the rest of
biology as well, said David T. Kingsbury of
the National Science Foundation. "More
large centers of data generation are beginning
to emerge, and they will generate more
data than they can interpret. In response, the
role of scientists will change: they will become
more interpreters of data. If those
centers we are starting don't put their data
on-line immediately, we are in trouble."
Throughout the OTA meeting the conversation
kept coming back to Gilbert and
his plans to copyright sequence data. There
was palpable unease, as well as considerable
uncertainty, about what he actually intends
2.4. JULY I987
to do. Much of the discussion centered on
whether he legally can claim copyright protection
for the sequence. Opinion varied,
even among the lawyers. Does deciphering
and then writing down the sequence meet
the test of originality necessary for a copyright?
"One view, which is not widely shared, is
that you can copyright sequences," said Susan
Rosenfeld of the science and law committee
of the Association of the Bar of the
City of New York. "This view holds that
DNA is like a computer program, so it can
be copyrighted." Rosenfeld challenges this
view, however, and says that most other
attorneys do as well.
Gilbert told Science that he can copyright
the sequence because "someone worked it
out and wrote it down--so the order of the
letters is copyrightable, like a string of letters
in a book." A number of other participants
ceded him the point. As Rachel Levinson of
the NIH director's office noted after the
meeting, "If people didn't take Gilbert seriously,
they wouldn't be worrying about it."
Cahill, for one, believes that Gilbert can
copyright the format in which the sequence
appears, if not the anatomy--the sequence
itself. It's not the copyright per se that
disturbs him, he told Science, but what it
means for rapid exchange of information. "If
Gilbert's data would be of value only before
the sequence is out as public information, I
don't see how he can make any money
unless he sits on it, in which case he will
engender hostility. It goes against all tradition
in scientific philantrophy."
Gilbert does not see what all the fuss is
about. "The idea of the company is to be a
service to the biotech and pharmaceutical
industries and to the research community
• . . to answer questions that biologists have
in doing research," he told Science.
His company, Genome Corporation,
"will create a catalog of all human genes,"
probably starting with DNA from a placenta.
The map and sequence data would be put
into a database, along with other useful
analysis, "where it would be made available
to everyone--for a price." He declined to
speculate on what the fee might be.
As he envisions it, researchers will log
onto the database and ask any question, such
as, where does this piece of DNA belong?
As Gilbert explains, "the company will say,
for a price, that the gene is on chromosome
21, 1,300,000 bases from the left . . . . A
user can call up any part of it and read it. Or
a pharmaceutical company might like a copy
of the whole sequence; we could license it."
He emphasizes that people would be free to
use this information however they choose--
except, of course, to reproduce it and sell it.
"You can buy a book but you can't sell it. It
is exactly that distinction."
What he is selling, Gilbert says, is ease of
access. "Ease of access creates value. It does
not have to be free to be of great use. It is
like making restriction enzymes. Everyone is
free to make their own, but they choose to
buy them because it is cheaper. Here, it will
be cheaper to ask the question than to work
out the entire sequence yourself. "
He concedes that once someone else sequences
the genome, the value of his database
might decline. "That's a business risk. A
competitor could move into the field. But
where is the weight of information? Whoever
starts first will end up by owning, by
having in his possession, the whole database.
Once someone has done it, it is in no
one else's interest to do it again. It would be
cheaper to pay for it."
All this depends, of course, on Gilbert
getting there first. He is still shy of the $10
million in venture capital he says he needs,
but he expects to be in business by midsummer.
And, with a "reasonably sized
company, about 200 people," he expects to
complete the sequence in about 10 years, after
spending the first couple of years on mapping
and developing new technologies in several
areas of activity, including sequencing.
He openly admits to being a "technologic
optimist." Most other researchers believe
that sequencing cannot be done quickly or
economically until various cloning and sequencing
technologies are automated,
which is often estimated as at least a 5-year
effort. To Gilbert, however, "it's not a question
of new technology development, it's
technology application."
If Gilbert's plans were seen as the only
challenge to open exchange of information,
the issue might not be the subject of such
intense debate. But other questions are arising
because work that is key to mapping and
sequencing the genome is also fundamental
to developing commercial products. As a
result, academic researchers are competing
directly with corporate scientists, who by
necessity operate under different rules of
disclosure. This situation may be common
to scientists in other fields. However, to
many geneticists, who are now finding that
they are denied access to scientific data, the
situation is new and often extremely frustrating.
A relatively new type of marker--restriction
fragment length polymorphisms
(RFLPs)--is a case in point. RFLPs (pronounced
rif-lips), which detect natural genetic
heterogeneity among people, are an
invaluable tool in searching for disease-cansing
genes, and they are indispensable in
mapping the genome. RFLPs can also be
fashioned into prenatal screening tests (linkage
tests) to detect genetic disorders, which
• explains the commercial interest.
These markers indicate the approximate
chromosome location--a region of perhaps
5 million to 15 million base pairs--of an
unknown gene. From there, finding the
gene itself is no small task, but it is far easier
than searching for it throughout the entire 3
billion base pairs of the human genome.
Indeed, these markers made possible the
recent localization of genes associated with
Huntington's disease, cystic fibrosis, Alzheimer's
disease, Duchenne muscular dystrophy,
manic-depressive illness, and chronic
granulomatosis disease.
As might be expected, competition is stiff
to develop these markers. Much of this work
is being done by Collaborative Research
Inc. of Bedford, Massachusetts, and by Raymond
L. White and his colleagues at the
Hughes Institute at the University of Utah,
although a few other companies are also
gearing up.
Collaborative, whose declared goal is to
be the leader in the field diagnostic tests for
genetic disease and cancer, has spent $10
million to date on this work and has developed
500 to 600 markers, according to
Thomas O. Oesterling, the president. David
Baltimore of MIT is the chairman of Collaborative's
science advisory board and is on the
board of directors.
White's group also has some 600 markers:
about 400 RFLPs and just shy of 200
variable number tandem repeat (VNTR)
probes, a newer and, he believes, more
informative type of probe. Both markers
detect genetic heterogeneity: RFLPs by
finding a single point mutation--a substitution
in one base pair; VNTRs by finding
repeated DNA sequences.
White's probes, along with those of other
Hughes Institute researchers, are deposited
in the American Type Culture Collection,
where they are available to other researchers;
Collaborative's are not. Collaborative
does lend its probes to some 40 to 50
academic collaborators, says Oesterling, under
confidentiality agreements.
Linking a gene to a chromosome is a
valuable first step, but it is not suificient for
developing a patentable commercial product.
The problem is that the marker may be
relatively far from the gene and thus may
become separated from it during recombination.
To develop an accurate screening test,
closer markers are needed, preferably flanking
That's where tension arises. If an investigator
announces that he has linked a gene to
a specific chromosomal region, others can
pull out their markers for that chromosome
and use them to find more informative
markers. The competitive advantage to
keeping quiet is undeniable.
In the grand scheme of things, a delay of 6
months or so would have little effect on the
pace of scientific advance. But many find it
disturbing nonetheless because it butts up
against deeply held scientific norms. "What
if someone finds the locus of a disease gene,"
Cahill asked at the workshop, "and then
holds onto it so others can't do the work.
How long can something be kept secret if it
is for the general good? I don't know who is
sitting on what now." Caskey pointed to the
recent cluster of papers announcing the locus
of the Alzheimer's gene. "It is unlikely
that everyone discovered it at the same
Geoffrey Karny, a lawyer with the Washington,
D.C., law firm Dickstein, Shapiro,
and Morin, challenged the notion that industty
will sit on something solely for proprietary
reasons. "Researchers sit on stuff all
the time until they are sure."
Similarly, George Gould, a patent attorney
with Hoffmann-La Roche, does not
anticipate problems with withholding. "The
history of the past 6 years is that biotech
companies have made information available
to the public very quickly--far more quickly
than patent attorneys would like." Gould
says that he and most patent attorneys
would like their scientists to delay publication
for 18 months so as to improve the
chances of getting a patent overseas. But
typically, he says, "people will publish early
to get scientific priority as well as patent
"A key question for industry," said Bernadette
Alford, a lawyer with Collaborative,
"is how to protect our investment and collaborate
with scientists. We need new mechanisms
to protect our rights or it will not
work." She says there are few obstacles to
sharing clearly patentable products. "But
other pieces of information, like the 300 to
400 probes we have developed, are hard to
share. We won't file patents on 300 to 400
probes. For 90% of the work we do, we
don't see how we can share it."
Collaborative was the first group to link
the cystic fibrosis gene to chromosome 7. At
the meeting Alford held out their handling
of this discovery as ideal. "We found it on
Monday and announced it on Wednesday."
They have subsequently developed a panel
of 12 markers, flanking the gene, that are
being used in diagnostic tests, available in
their laboratory for $1100.
However, a number of researchers told
Science that Collaborative held back their
results for several months until they could
find more informative markerS.
Alford denies the charge. "We had been
working on cystic fibrosis for months. But
once we could get positive scientific confirmation,
we immediately announced it." Immediate
announcement was possible, according
to Alford and Oesterling, because
they could envision a diagnostic test and
thus filed for a patent. As Oesterling later
explained, they filed a patent application for
"the probe and any other probe between
that one and the gene."
Their broad-ranging patent application,
like Gilbert's copyright claims, does little to
relieve the simmering tensions.
"Their patent application seems unreasonable
to me," says White, who points out that
Collaborative essentially patented his work
before he even did it. Since Collaborative's
discover),, he and others have found closer,
more informative markers. And the whole
question may be moot anyway, White says.
Robert Williamson of St. Mary's Hospital
Medical School in London recently reported
the identification of a candidate cystic fibrosis
gene. IfWilliamson is right, says White,
"it will completely blow Collaborative's test
out of the water. It will become a useless
panel of probes."
There is no knowing how the patent
office will view Collaborative's application.
The situation regarding patents for these
products and processes, as for the rest of
biotechnology, is hazy at best. Indeed, a
patent application of the process for making
RFLPs has been pending for 7 years. The
application, filed by Stanford University,
has been licensed to Collaborative.
Alford, however, is fairly confident of
their claim. "We found the linkage to chromosome
7, and others began to look there,"
she told Science. "But one would argue that
it is our teaching that led them there. We'll
wait to see what the patent office says. But
we believe that by identifying the locus with
the RFLP, We are telling the world where to
look for the cystic fibrosis gene."
Although these new arrangements pose
challenges to scientific collaboration, several
workshop participants were sympathetic to
the predicament of Collaborative Research
and other companies. "It's a Catch-22," says
Cook-Deegan. "If a company behaves in
what scientists believe is a socially responsible
manner, they can't make a p?ofit."
"collaborative Research envisions themselves
as world leaders in markers in the
human genome," Kingsbury told Science.
"They are worried about sending out probes
that could be commercialized by their competitors.
Frankly, I'm somewhat concerned
about this. But I understand their concerns;
probes are easy to duplicate. I'm not sure
what kind of safeguards we need."
Clearly, new mechanisms will be needed
as DOE, and perhaps NIH, step up their
mapping efforts. DOE is already supporting
mapping work on chromosomes 16, 19, and
21 at Lawrence Livermore National Laboratory
in California, Los Alamos National
Laboratory in New Mexico, and at Columbia
University. And for fiscal year 1988,
DOE has requested $12 million for the
genome project, up from about $5 million
for the previous year. David Smith, who
runs DOE's human genome project, declines
to comment on the budget request for
fiscal year 1989. But a recent report by an
24 JULY I987
advisory committee to the Office of Health
and Environmental Research recommended
that DOE's genome project receive $40
million for 1989, with stead), increases up to
$200 million a year by 1993.
Within a few months DOE will be issuing
requests for proposals for mapping and
technology development. And DOE would
like to use Collaborative's markers in developing
their map, Smith told Science. "There
is a tension between maintaining the rights
of people to realize that monetary value and
between the goal of getting information
into the public sector where it can do some
good. We are talking with Collaborative.
We are optimistic that we can maintain their
proprietary interests and have markers available
for mapping. It is not an insurmountable
"We have a lot of probes, and we would
like to participate," says Afford. However,
without safeguards of some kind, Collaborative
will not place its probes in a repository
where they can be used by investigators
working on the physical map, she says. In
her view the best initial approach would be a
repository that contained a complete list of
information on the known probes, what
they do, and who has them--but not the
probes themselves.
One mechanism discussed at the workshop
is a requirement, imposed on all researchers
participating in the federal project,
to make materials and information available
at the time of publication or perhaps with a
1-year grace period. A possible model is the
Centre d'Emde du Polymorphisme Humain
(CEPH), the French database. CEPH sends
out its materials with the stipulation that
users in turn send their data back to CEPH.
It also offers a degree of proprietary protection;
a researcher may request that his materials
not be made public for 1 year, though
they are available to other CEPH collaborators.
Other large federal collaborations may
also present use~l models for meeting the
dual objectives of ensuring information exchange
while guaranteeing some form of
proprietary protection. Two mentioned at
the meeting were the federal programs to
develop a malaria vaccine and AIDS drugs.
The key, the agency officials, lawyers, and
scientists at the workshop agreed, is for
agencies to set up in advance the requirements
for information exchange and then
condition grants on them. "Unless arrangements
are created in advance," Cook-Deegan
says, "some people will not collaborate."
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Seen in the Stars
A tricky observation of radioactive thorium in nearby stars
leads to a surprisingly young age fbr the galaxy and fbr the
universe; many astronomers are skeptical--but some are
A T a time when most astronomers
would agree that the oldest stars in
our galaxy have been shining for
some ] 5 billion years, anyone claiming that
the universe itself is only 11 or 12 billion
years old is bound to raise a few eyebrows.
Yet Harvey R. Butcher, director of the
Kapteyn Astronomical Institute in Groningen
*, the Netherlands, is claiming just that--
and some researchers think he is right.
Butcher bases his conclusion on recent
spectroscopic observations of the radioactive
nuclide thorium-232, which he has
measured in the sun and in 20 nearby stars
that are like the sun. The 14-bi!lion-year
half-life of this isotope has long made it a
favorite of researchers trying to do radioactive
dating on cosmic time scales. Indeed,
the standard figure for the age of our own
solar system, 4.6 billion years, is in part
derived from the relative abundance of thorium-
232 and various uranium isotopes in
meteorites and in moon rocks.
In Butcher's case, however, he compared
thorium-232 with a different nuclide, neodymiurn-
142, which happens to have a spectral
line that originates in the same part of a
star's atmosphere as the thorium line. This
location makes it a particularly usefial calibration
standard, since there are no correc-

Robyn Williams The Science Show Radio National

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Broadcast Saturday 06/09/2003

Who Owns Your Genome?

The human genome has been sequenced and the information holds the key to preventing, curing or giving early warning of many genetic conditions. It also has the potential to create a genetic underclass if this information must be disclosed to employers and insurance companies. So, should this powerful knowledge be used for public good or private profit? Who does own your genome?

Robyn Williams: Today, a Science Show special, Who Owns Your Genome, a topic becoming more and more immediate as your genes and mine become public property, even private property. This is a forum held at the Australian Museum, which featured three main speakers: Sir John Sulston from Cambridge, Kris Barlow-Stewart, a genetic counsellor and Clive Hamilton from the Australia Institute in Canberra. We begin with Sir John Sulston, who for some reason, says that mapping the Human Genome was a small project.

John Sulston: Why I’m say it’s a very small project is that reading it out, although technically a great feat in terms of getting the automation and the machinery and so on, the computing, to work adequately to do it, is just a beginning because understanding it now spreads out into all areas of biology, especially when you consider that we’re not just reading out that code but the code of many other creatures. And it’s by comparing them with one another that we’re going to go forward in part, and in part by doing lots and lots of experiments. But in order to do lots and lots of experiments you’ve got to have access to all of these codes and you’ve got to have very open access really; you can’t sort of choose in advance exactly which one you’re going to take and you know, sort of buy it from somebody and use it separately, you’ve got to have constant access to the whole lot, to browse around and compare what you’re seeing with what’s there in the data bases. And for that reason this international consortium, which was the Human Genome Project, put all its sequence as it went along into the public data bases. One is in Washington in the US, one is in Cambridge in UK and one is in Japan, at Mishima and they all hold the same set of data. It sounds a little bit wasteful until you consider that this is actually very important data and we don’t want to lose it, so it’s a rather good idea to have it scattered around on three continental plates with three different funding systems and all the rest of it. And so these data bases exchange all their data all the time. We’ve got this very secure sort of storage but everybody can come and look at it freely.

And now, what brought the story of The Common Thread into being really was that we had a challenge while we were doing this with a different view of how it should be dealt with, the view from Celera Genomics that data might profitably be gained and profitably exploited, in the sense that it could be kept in a private data base and then there would be an entry fee to go and look at it. In fact, the company was beginning to patent quite large sections of it of file patents on odd sections.

So, we had to make sure that we got our data out and undercut this effort because otherwise it wouldn’t be in the public domain. And I’ve already given one reason why I think it should be in the public domain: it needs to be worked on by many people because the understanding is more difficult than the acquisition of this code. A second reason is that fruits of this endeavour are going to take a long time to come. We’re seeing some fruits right away, right now we’re beginning to look at the variations, the small differences, one part in a thousand by which one person’s copy differs from another copy. So that we can do right away and we can begin to correlate variations with one’s fate in life in terms of sickness and health and all sorts of matters, which maybe useful medically, will be useful medically and are beginning to be so already.

But then going on, we’re using information from the genome to study some things in much more detail, and the particular one that I draw attention to as being immensely important and having a very bright future is cancer treatment, because cancer is a disease of DNA, the tumour growing in you is altered in some or several parts of the DNA, which means that the cells have escaped the normal controls of the body and it just continues to grow uncontrollably. Now, to pin down the precise nature of those changes, those mutations in the tumours that cause that, will allow new drugs to be developed, targeted very specifically, very precisely and will give much better treatment. But actually developing that, both discovering the targets and developing the drugs, is going to be long process, so we’re talking now not about next year, we’re talking about the next couple of decades perhaps when a number of forms of cancer will be treatable.

That’s just to sort of give a positive point about how very valuable this is going to be and there are many, many more things we can talk about, culminating for me in the complete understanding of our bodies and that’s something that will only come over many decades, but having this basis of the complete information to build them is obviously going to be immensely important.

And so I want to come back to saying why we called the book The Common Thread. We called it The Thread because of the thread of DNA but also the thread of ancestry, the fact that we don’t invent our DNA as we go along, it’s something that we hold but it’s been copied through all the generations from the earliest people, the earliest primates, all the way back from 4 billion years ago when our first common ancestor arose on earth. It’s not something that we have created, it’s something that we’ve found, that we’ve discovered and it’s very, very clearly in every sense of the word a common heritage.

So, we have the common thread of ancestry, the common thread of the DNA molecule itself and it’s very clear to me that we should treat this material and this enormous potential equitably. And that, I think, leads us to the most important part of our discussion today I would say, which is to ask ourselves, how can we use this more equitably when so many social and political forces in the world are driving us towards more discrimination and more inequity in society both nationally and globally? I think the developments of biology and the practical developments, the potential for discrimination if we misuse this for example, drive us towards believing that we have to work more for the social good and so although it seems to many at the moment a rather scary prospect of this enormous new knowledge we may get, I hope, I really do believe in fact, as a matter of necessity that it’s actually going to drive us more towards the social good once we’ve all fully considered it. And so it’s that consideration that I hope we shall be doing excitedly and amusingly but actually very importantly. Thank you.

Robyn Williams: Sir John Sulston on Who Owns Your Genome coming from the Australian Museum. Next, someone who’s at the human face of these questions, Kris Barlow Stewart, a genetic counsellor. Kris.

Kris Barlow-Stewart: Thank you very much. I think often my job these days is to give a reality check. There is enormous promise in the future but we do have to deal with what we are experiencing today. So, let me just get you at down to ground level, that genetic conditions are family health problems so using the new genetic technology, or the old technology which is a family history, we can determine that some particular family members are affected by a condition that is running in the family, and when that happens their relatives are at increased risk. I’d like to tell you some stories about some of the families that I deal with, to give you a glimpse into what it means to encounter the genetics technology today.

Take Cathy, Cathy is 32 years old, she’s just been diagnosed with breast cancer, that’s quite young to develop breast cancer and moreover, Cathy’s father’s sister and her grandmother on her father’s side also had breast cancer at a relatively young age. Now, we used to think that breast cancer, a woman’s disease, couldn’t be passed down through the Dad but in fact, we now know that an inherited predisposition to develop breast cancer along with all the other environmental triggers that we still don’t know anything about, despite the advances of the human genome project, can put a daughter of that father at increased risk.

So, Cathy developed breast cancer, she went to the familial cancer service and after some consideration, when all the options were explained to her in genetic counselling, Cathy decided to have the genetic test and she was found to have a faulty gene that predisposed her to breast cancer. Now, all of us have some faulty genes, we’re born with estimates from 4 to 12 different faulty genes. So, we found out the particular faulty gene that she had and that meant that she was predisposed to breast cancer, which she’d already developed, but also predisposed to ovarian cancer, she was now at high risk and so she would need extra screening.

I said before genetics is about families. Cathy spoke about her relatives, she has two sisters, one who’s 28 younger and one who is 34, older. But Cathy said, I haven’t spoken to my sisters and I will not speak to my sisters – we’re talking about families her, families don’t always get on, hey. So the doctor, the genetic counsellor, everyone encouraged Cathy to tall her sisters not only that she had breast cancer but that they were now at increased risk, that they should go to genetic counselling if they wished to know this and of course their right not to know should be equally respected if they make an informed decision about it. But Cathy didn’t tell her sisters.

Two years later, Cathy’s older sister was diagnosed with advanced ovarian cancer and she was unaware that she was at risk and that there might have been something that she could do about it to prevent that coming on.

Now whose responsibility was this? Was it Cathy’s or was it the doctors? Should the doctors have over-ridden Cathy’s confidentiality and rejected Cathy’s right to privacy and warned her relatives? And these are issues that we in Australia and I think everywhere in the world are grappling with; issues that have been highlighted by the Human Genome Project. And in fact there is a lot of concern in our community about discrimination, from employers, from insurers, what is this information going to mean and how is it going to be used?

A few years ago I conducted a national survey of genetic support groups, the people most likely to have experienced genetic discrimination and I got lots of responses and we very carefully honed down the cases that we thought represented genetic discrimination and the reason we got so many responses was because it was anonymous. But the problem is that we couldn’t verify that these families had actually experienced discrimination in insurance and employment. The stories sounded good but we just don’t know exactly what happened in the assessment of their risks.

Some had been refused life insurance, some had been unable to increase the amount of insurance that they needed to have and all of this occurred after they had disclosed the fact that they had had genetic test and that it was positive, or negative in some cases, because that’s the contract that we in Australia have with life insurance companies. Unlike the United States our health insurance is community rated to our health insurance is not being impacted by genetic health information, but life insurance is, but it’s a voluntary contract, and the insurance industry says: we need to know what you know. So if you’ve had a genetic test and you know what it is you have to disclose it. And unlike in the United Kingdom where research findings are exempt from being declared in insurance we have to disclose them. One of the other problems here is that if you have a parent who has had a genetic test result and you fill in an insurance claim, you have to declare your parent’s test result.

Now, one of the concerns that I have now is, is this going to stop family communication, that parents won’t tell their children because if you don’t know the information you don’t have to declare it.

We don’t really know the extent of genetic discrimination in our society. I am just currently working on a research project that’s funded to the end of 2004, to try and get some evidence – was there misunderstanding when the families said that they were being discriminated against on insurance or was it really that they were? And this is not an easy project to do because the concerns about the fears of discrimination are that, for example, people won’t participate in research involving genetics because of their fears that they won’t be able to get insurance or their children won’t be able to get insurance.

My last story is about Jim. Now, Jim has a family history of cardiomyopathy, it affects the heart muscle and Jim’s dad died of a heart attack when Jim’s dad was 45. Now Jim was at 50% risk of having inherited the faulty gene and Jim decided that he would want to know whether he had it or not so he goes along, has genetic counselling, says yes, I want to know and he inherited the faulty gene, which means that he is likely at some time to get this condition if the faulty gene is expressed. Now the problem with genetic disorders is that, even if you have the faulty gene it doesn’t necessarily mean you’re going to express the symptoms. And even if you have the faulty gene and it’s expressed, the symptoms might be mild or they might be severe. So all this mapping of the human genome has actually only taken us somewhere along the path and hasn’t given us the full story. And it may never give us the fully story. But back to Jim.

So, he now has this genetic test information. Who owns it, does Jim have to tell his employer? He’s a school bus driver, his doctor thinks that he should tell his employer because one of the symptoms with this is that he could just have a sudden heart attack and so the children in the bus are therefore at risk. Who has the greatest right to this information; his employer because of public safety or Jim, who doesn’t want to lose his job? And Jim also wants to take out life insurance and income protection, just in case he does have a heart attack, but he’ll have to disclose that test result to the insurance company. And his chances of getting insurance are likely to be severely impacted.

I’d just like to finish with three words: freedom, burden and power. Undoubtedly, there are freedoms that have been generated by this wonderful scientific achievement. People can now make choices that they have never been able to have before; often they’re reassured that they haven’t inherited the faulty gene and the fears that they’ve been living with have now been eliminated. But along with those freedoms come choices, choices that were never experienced by previous generation: to terminate a pregnancy based on the diagnosis of a condition in a 12 week old pregnancy; the choice to have a genetic test and you find that you have not inherited the condition and your brother has – survivor guilt is something that we never expected to find. And of course then, there’s power: power of third parties - who indeed owns our genomes? Thank you.

Robyn Williams: Thanks Kris. Kris Barlow-Stewart. And now an economist, someone who’s studied the conflicts between private interest and the public good – Clive Hamilton.

Clive Hamilton: I’m delighted to be here to comment on this fascinating and compelling book, The Common Thread, and what struck me most was the clash of value systems between the academic researchers of the Human Genome Project and those of the private enterprise venture established by Craig Venter. One group worked for the benefit of humankind and the other worked for the benefit of a few shareholders. One group was determined to be collegial, collaborative and open, the other was intensely competitive, secretive and, it must be said, untrustworthy - profitmongers John refers to them as. One group wanted to provide this vital knowledge to the whole of humanity, the other wanted to privatise, to patent the knowledge so that no one else could use it - a genome gold rush, unless they came and paid for it.

As you wrote, ‘the genome sequence is more than a commodity, it’s the essence of biological heritage, the instruction book for living things’. The only reasonable way of dealing with the human genome sequence is to say that it belongs to us all, it’s the common heritage of humankind.

Well, market values, the sort of values that drove the other mob, market values are fine for markets and private goods, we’d expect to know more, but when these market values penetrate areas of human life where they don’t belong, they corrupt much that is noble in us, for when market values rule, calculation drives out trust, self-centredness displaces mutuality, superficiality prevails over depth and our relationship with others are conditioned by external reward and above all, by money.

When market values prevail playing fair seems to be naïve. Today, when a cricketer walks or when a mountaineer sacrifices reaching the summit to help another, our admiration for them betrays our despair at the usual state to which we have descended.

So let me just comment on some of the other areas of life where market values and economic thinking have corrupted much that’s admirable in us. One of the earliest and most aggressive exponents of this economic imperialism was Garry Becker, the Chicago economist par excellence who, in an article published in one of the economic profession’s most prestigious journals applied the principles of economics and consumer behaviour to what he called ‘the market for marriage’. Garry Becker defined marriage as ‘an arrangement to secure the mutual benefits of ex change between two agents of different endowments’.

In other words, people marry in order to more efficiently produce what he called household commodities including quote, the quality of meals, the quality and quantity of children, prestige, recreation, companionship, love and health status. The rational person he argued, will base any marriage decision on quantifiable costs and benefits, the gain from marriage has to be balanced against the losses including the legal fees and the cost of searching for a mate, in order to determine whether the marriage is worthwhile. Becker went on to analyse the effect of quote: love and caring, on the nature of the equilibrium in the marriage market. To do so he defined love as a quote: non-marketable household commodity, noting that more love between potential partners increases the amount of caring. Why is this valuable? Because this in turn reduces the cost of policing a marriage. Policing of course, he went on, is needed quote: in any partnership or corporation, because it reduces the probability that a mate shirks duties or appropriates more output than is mandated by the equilibrium in a marriage market. (So there’s no need to put a padlock on the fridge if your partner loves you.)

After pages of differential calculus Becker reaches a triumphant conclusion: since love produces more efficient marriages quote: love and caring between two persons increase their chance of being married to each other.

Now what Garry Becker’s wife thought about this isn’t recorded but in 1992 the Royal Swedish Academy of Sciences was sufficiently impressed to award him the Nobel Prize for Economics for this and related work - and apologies to Sir John if this story takes some of the shine off his own Nobel Prize.

Let me give another illustration of the way in which economic thinking can corrupt moral values. In the early 1990s the Chief Economist at the World Bank was a man named Laurence Sommers, he was later appointed by President Clinton as the Secretary of the US Treasury. At the time, the World Bank was taking an intense interest in global environmental problems and was proffering advice to developing countries. In a leaked internal memo Laurence Sommers argued that rich countries should ship their toxic wastes to poor countries, writing that quote: the economic logic behind dumping a load of toxic waste in the lowest wage country is impeccable and that underpopulated countries in Africa are vastly underpolluted. How do we know this? Because in poor countries, Dr Sommers wrote, the foregone wages as a result of illness and early death are so much less than in rich countries.

In other words, because they’re poorer the life of an African is worth much less than the life of an American and it has to be conceded that economically speaking, Sommers logic is impeccable, it’s just that we shouldn’t think about these things economically. So, we gasp at Laurence Sommers chutzpah, but what’s the moral difference between dumping our toxic wastes in Africa and refusing, as the Howard government does, to ratify the Kyoto Protocol and reduce our greenhouse gases unless poor countries do likewise.

In the lead up to the Kyoto Conference in 1997, small island states in the Pacific expressed their alarm at scientific projections indicating that several of them would be flooded by rising seas. The Australian government’s chief advisor on climate change told a conference in London that it might be more efficient to evacuate small island states subject to inundation rather than require industrialised countries like Australia to reduce their greenhouse gas emissions.

So then, certain areas of life should never be turned over to market values. Let’s keep the private markets where they belong but where there is a public good involved - and I can’t think of a better example than the Human Genome Project, when these public goods are at stake, let us keep to an ethical humanity and that includes the genetic map of humankind.

So, I think we all owe a huge debt to John Sulston and his collaborators. Through an extraordinary dedication to the past, often at tremendous personal cost, they have rescued the instruction book for human life from being captured by privateers. John Sulston and his collaborators have ensured that the instruction book for human life will be read freely for the indefinite future by all of humankind, not only those who can pay. Thank you.

John Sulston: About the insurance. Britain has not made a moratorium about all life insurance, it’s made a moratorium up to a certain threshold. We understand very well that if you insure your life or you want to insure your life for say, $100 million then you’re really gambling with the insurance company, this is a lot of money. But what we feel - and whether or not we can make the moratorium remain I don’t know, it’s run for about two years and it’s got three years to run, but what we feel is that it is part of the requirement to be a full citizen, to be able to ensure sufficiently to protect a mortgage, not a huge mortgage but an average one, to protect your dependents and therefore to protect your income in some way, and so that takes you up to a threshold. And it’s exactly the same idea as not allowing people in one’s society to starve because they are out of work or not allowing them to fail to have health care because they don’t have sufficient income. It’s an insurance has now come and it’s probably a new development really over the last century, gradually.

Kris Barlow-Stewart: That’s what I would have liked to have happened in Australia. There’s just been the completion of a Federal Government enquiry, the report is on the Australian Law Reform Commission’s website; it’s 1200 pages long, a long read, but they have maintained the status quo. Geneticists like myself proposed a system like the UK but that was not recommended by the Australian Law Reform Commission. What we have now is what has been recommended to continue, and my concern about insurance is that the science is so new I do not think that there is enough statistical or relevant evidence to be using these tests in the assessment of risk for insurance just yet. I mean, perhaps in 5 years when the moratorium perhaps is finished, but we are faced in Australia with using this information now and I think it is impacting on families.

Robyn Williams: Paul Willis.

Paul Willis: Just a quick comment and then a question. The quick comment to Clive. I have a T-shirt that says Economic Rationalism Isn’t and when you wear it you always find the economic rationalists; they’re the ones that come up to you and say, Isn’t what?

Sir John, it’s a couple of years ago now isn’t it, that both Nature and Science came out with the same paper promising to show us the human genome, and I remember running down to the library with great expectations expecting to rip open this volume that could only have been stored at Hogwarts because of its size, with ATCCGTAAC ad infinitum through the whole volume. Instead I found what I thought was a relatively short paper with a load of graphs on it. How is that information of the genome condensed so that it can be put into one paper?

John Sulston: The paper is just the gossip column relating to the human genome. The actual human genome sits on these computers, it does take 3000 million characters to write it fully out, that’s an awful lot of telephone directories - I always forget how many but it’s supposed to be a stack up to the ceiling or something, and they just don’t do it that way. You access it via computer searching for keywords as it were in the system; it’s like using the yellow pages you know, there’s a variety of systems you can use. But a very important part about the public project as opposed to the private project is that all of it has always been available, you can do whatever you like with it; you can use the yellow page tools, you can also have the whole lot at any time and you can manipulate it as you wish.

Robyn Williams: Next question please.

Question: My genetic material cannot be repossessed, it will continue to express itself, I don’t have to pay a royalty to use it. I could come up with some sort of descriptive method instead of using CATG and come up consequently with different names for the compounds that are in there. If they’re claiming a patent is the list of CATG whatever repeated, isn’t that more of a copyright? What do they own?

John Sulston: I agree with you totally. I mean, my argument is exactly the same thing, we talk about this in the book. But curiously people seem to be very mystified by this. The European directive on this says, so long as the gene is inside your body, then it’s not patentable, but as soon as you get it out and sort of grow it in a bacterium or something, then it is. And I say, well, that’s like taking one of our books which is in hard back, writing it out in paperback and then saying that’s yours. So it’s exactly the same point: that it’s the information we’re interested in, we don’t care about the chemistry.

So how do they get around it? The battle for us over the last 5 years almost up to the present was to ensure that that particular form, just the strings, could not be patented in any way because we’ve got them out there. What happens now is that people get rather broad patents by listing all the things they might possibly do with this bit of DNA, you know, you’ll just cover all versions of them in the patent. This is what Myriad Genetics has done, and what they’ve listed is a couple of dozen different things they can do with it and that thing has gone through. So it’s not only all the testing that they control but also all the possible research leading to practical therapies, all of which obviously would in the end be commercial drug sales or something and so are controlled by the company. So I see that as a trick, I think that some effectively through the patent system as it now stands, people are allowed to ring fence what should be a matter of a common good and effectively turn it into a patentable item by listing all the utilities.

Now the right thing to do is to proceed by narrowing the patent and saying no, the utility has to be what you can actually do with it right now; your particular test you can patent you know, the bits of plastic and reagent that’s fine, but you should not be in a position to patent all competing tests. After all we want people to innovate, we want to invent around, to use it in different ways and certainly to develop cures in the long run and those should not be touched by the person who just knows how to test the gene in one particular way.

So I think that’s the future but how we persuade against obviously the force of people who are benefiting from the patents, you know the companies and their lawyers and obviously the shareholders, which tend to include all of us, we’ve got to persuade people to swing back and make these much narrower patents.

Kris Barlow-Stewart: The BRCA1 gene is one of the genes that is involved in predisposition to breast cancer that I was talking about, and Cathy for instance is able to have this test because it’s offered free through our Public Health system, but Myriad Genetics who hold the patent have actually licensed a company called GTG Technologies in Australia to implement their patent and do the testing. Now GTG Technologies may or may not implement that patent, but if they do they have exclusive licence to test it so nobody else can actually test that in Australia, and the charge will be around $US2500.

So now we have inequity of access. So there is currently another enquiry being conducted by the Australian Law Reform Commission into gene patenting in Australia, they’re calling for submissions now, if you have anything to say you can write you can contact them through their website because I think it’s an issue that we in Australia need to have a voice on and express our disquiet at what might happen.

John Sulston: I mean, the cases are going forward now in Canada and in France and Germany I think, but in both France and Canada litigation is happening with Myriad, so I do urge Australians to stand up and join those other countries in opposing this iniquitous abuse of the patent system.

Question: Given that particularly in Australia and in all World Trade Organisation countries, the relevant treaty governing intellectual property rights gives governments the opportunity to refuse patents in relation to health care, to diagnostic and therapeutic measures and that basically the reason why these patents are getting through is because market thinking has so severely infiltrated every sector of government. What do you think are viable means for people to illustrate to their governments that health care shouldn’t be a market driven sector, that it’s really a captive environment, that people will always need health care.

Clive Hamilton: The argument for privatising knowledge for example through patents is based on the belief that unless people can generate a profit from it then they won’t explore, they won’t investigate, they won’t innovate and so on, and it struck me reading this book that it’s a brilliant refutation of that argument. Here you had a publicly funded project which not only was intensely driven by the desire to discover but actually did it better than the well-funded private enterprise venture. And the interesting thing was that the funding for the public venture came not so much from the government, although in the US a lot of it came from the government, but in Britain it came from the third sector, from the philanthropic trust, the Wellcome Trust. And if you look at what was motivating the researchers in the Human Genome Project, they were intensely competitive but they weren’t motivated by making a lot of money, they were motivated by professional pride, they were motivated by a desire to do a good job, to contribute to humanity and the idea that people will only work hard and innovate and attempt great things if they are going to make dollars out of it seems to me really quite perverse and refuted by this very process we’ve seen.

Kris Barlow-Stewart: The arguments of course that the biotechnology companies put up is that they invest millions of dollars to forward this information that might be publicly available to develop treatments, pharmacogenetics, proteomics, they’re the source of next buzz words for industry, and they have to get some of that back, but I see that there has to be some compromise between balancing that and enabling access to health care, because I don’t think patents are going to go away.

Robyn Williams: Next question.

Question: Is it not the case that this patenting is actually stopping research into the reliability of the breast cancer gene test as a predictive tool?

Kris Barlow-Stewart: Yes, I mean there is great concern about the limitations on research. We will only find out more by being able to have more people undergo the genetic testing and look at their history about what happens with them, so what does that genetic test result mean and perhaps, you know, how can we extract the genetic information better and analyse it differently. The concern is that one of the things that Myriad does is it reads the gene from beginning to end so the story comes out about what that message says in terms of breast cancer development.

Just to clarify things, we all have the so-called breast cancer gene. I think scientists have a lot to answer for in their naming of genes. The breast cancer gene is not a breast cancer gene, it’s only a breast cancer gene when it’s faulty, it’s actually tumour suppressor gene – but that’s another story.

Anyway, one of the problems in reading it from beginning to end is that there will be differences in the information and until we can follow up exactly what people have with the different expressions of that gene, we’re not going to know what it means. So yes, I am very concerned about the limitations on research.

John Sulston: I would back that up and I was just sort of reflecting you were saying quite rightly that the BRCA genes are tumour suppressor genes, I would say that Myriad is a research suppressor organisation because its patent is a mutation of lots of people doing that. I know that very well because when I was travelling in Canada in the autumn it was just when Canada had been hit by Myriad’s threat to sue and British Columbia had actually chucked in the towel right away and decided they couldn’t afford to be sued, but Alberta where I was travelling as well as Ontario had continued testing. And I went to the geno typing lab in Alberta where they were doing this and they were using a test method that’s quite different from Myriads and costs something like a tenth as much. Now Myriad deride this method and say, oh home brew technology, useless. But curiously this actually picks up certain sorts of mutations that the Myriad test doesn’t, although Myriad are perfectly correct in saying that occasionally their tests will do better than other one. So the point is, why I say that they’re a research suppressor is because they are a competition suppressor and that’s the way the wrong kind of patent works. I’ll just come back to re-emphasise what I was saying. I’m not at all against the patenting system - well I am a bit - but I’m particularly not against it when it is properly protecting and licensing inventions. The whole idea of patents is they should be a social contract between the inventor and society, they offer the opportunity for other inventors to come around the side and make a competing invention, to make a better mousetrap as we always say in the old metaphor; to make a better mobile phone, a better car, a better television, these are the way patents are supposed to work, they don’t work at all when we use them to block off a whole area by the thing being too broad. OK? So I think it’s very clear that although Myriad is a particularly bad case because of its high licence fee, in general this patenting of genes will do us a disservice by blocking competing research and although it may seem to be a good idea for raising venture capital to provide the research effort, in fact, in the long run I think it’s a very bad idea because it prevents competition.

Robyn Williams: And the next question comes up here in the sky.

Question: A few years ago in a well publicised case in Northern California a fellow had a cancerous spleen, which I think was removed, and then the oncologist subsequently developed an interesting cell line from it and patented it and the fellow who had the original cancer then made a claim. He said, well it was his cancer and therefore he should have some value from the economic development. Would you agree that once he has the cancer removed he sort of forfeited any financial value from the cell line?

John Sulston: I think it’s a good example and actually broadening that out tremendously, we’re seeing exactly the same thing in the question of collecting genetic information from various isolated populations in the world has run in tremendous problems because people have become aware that when their blood samples are collected they’re probably going to be used if possible to make somebody in a rich country rich. And so people are sort of drawing back and they are refusing permission and then we get all sorts of things like informed consent coming in and what should we be doing. I just think this is bollocks, you know. What we’re doing is to drive goodwill out of the window by this excessive regard for property. My attitude is, and I think it’s the attitude of a great many people, it’s certainly was the attitude of the families who contributed to the discovery of a lot of these genes by providing their family information and samples, their attitude was that they were happy to help provided that the research was used to the good of all, and it’s only now, where we’re getting this excessive level of protectionism and litigation coming in that people are starting to make a fuss and saying well, if there’s all this wealth flowing around, billions of dollars being made out of my tumour line in this case, or my blood sample if you’re the case of a South American Indian, then I want some of it too, and I support them. But I think it would be far, far better if we said nobody owns these things, in the same way as I say nobody owns the genome, nobody owns their blood sample in a sense, because they share them with everybody else.

Kris Barlow-Stewart: A real life example of some of the problems is that in the United States there was research going on, I think it was Miami Children’s Hospital, it was a fairly rare condition that was common in the Jewish community and a lot of families from all over the world had contributed blood samples to have DNA extracted to enable the gene involved to be identified and a genetic test developed, and the hospital took out the patent on the gene. Disquiet occurred amongst the community of families affected by this condition, because even though they had contributed their DNA to the finding of the gene they were now being charged a lot of money to have the test. So they took it to court and in fact were able to get the patent over-ridden and it is now shared between the hospital and the parents. And exactly what John was saying, because access is being blocked, there’s no longer public good. In Australia, if you give a blood sample, if you have some tumour taken out and it’s kept by the laboratory, that sample belongs to the hospital or the laboratory, you no longer own it and that’s by law. So when we talk about our blood sample we don’t have any say in it.

Question: I actually lecture in intellectual property at UTS and I have to say whenever I lecture in patents, whenever we come to the point about patenting medical treatments there is always a lot of disquiet among the class. And the leading case in the area is a case called Rescare v Anaesthetic Supplies and the judges there say, Look this is too hard, this should be handled by parliament. And of course the parliament isn’t going to do anything so it just goes to the courts. But I think one of the issues that has to be borne in mind is that a patent does only last for 20 years, so after the 20 years everyone does have access. But secondly, I think a lot of the problems have been caused by the way the patent system is administered in this country and a lot of the time, a lot of the patents that you’ve described are not true patents, and if it was ever tested in court they would be revoked and indeed, most patents which go to court are actually revoked. The problem is that there is not enough funding given to the patent office to actually thoroughly test whether or not a patent is properly a patent. They’re presumed to be patentable because it just costs too much money to actually go through the process of checking and then what happens is that no one ever contests it, and everyone knows that patent suits are the most expensive litigation to run. And indeed, if a lot of the patents were contested they would not be what they have to be, which is novel and they would not be an invention. But until we have a system where patents are actually thoroughly tested when you apply for them, and there is some sort of funding for patent litigation to properly contest a patent, we’re going to have these problems. The problem is that once you get a patent you’re in a very strong position to hold onto that patent.

Clive Hamilton: Well, 20 years is a long time. As John Maynard Keynes said: In the long run, we’re all dead - particularly if you have breast cancer and you can’t get access to the tests or the remedy because you’re not wealthy enough. But I think a lot of our argument is about where boundaries should be drawn, what’s the distinction between a public good and a private good and none of us dispute that there are both, it’s just where the boundaries should be drawn. And the importance of drawing it is that where there are public goods involved ethical values are the ones that ought to predominate and where it’s demonstrably and is accepted to be a private good, then it’s legitimate for economic or market values to prevail.

Kris Barlow-Stewart: One of the current problems with the human genome is that echoing what John said, it’s being utilised more in the developed countries and very little in the underdeveloped countries. I’m fairly pessimistic too about the next 20 years unless our leaders embrace the impact of this technology and pass laws and regulate to ensure that there is maximising of the benefits and minimising of the harms. I would hope to see greater utilisation of this technology to ensure clean water, to ensure that we can eliminate malaria for instance, but I don’t think that’s going to happen unless there is will to do so.

Clive Hamilton: Well, in 20 years time my greatest fear is that the military will own the human genome, but I’d like to echo Kris’s arguments, increased economic growth and higher incomes in rich countries will not increase our levels of social well being. In the United States as in Australia incomes per person have increased three or four times in real terms in the last 50 years and yet if you look at meters of well being or happiness they haven’t increased at all and in many measure have actually declines. So you have to ask yourself whether devoting enormous potentialities of genetics to increasing the growth rate of rich countries will have any impact at all on our collective well being. And so, like Kris, I’d like to suggest that the ownership and the benefits of these extraordinary developments should be devoted predominately to those people who can benefit from it most and that is poor people in developing countries.

Robyn Williams: If we take say ten or twenty years, let’s say twenty years time, how do you think we might answer this question: who owns the genome? Will we be as concerned?

John Sulston: Well, biology ten to twenty years ago was worth nothing, it was a thing for eccentric vicars and ivory tower scientists like myself. What’s happened quite suddenly is that it’s become of commercial value although the perception is much larger than the reality right now. And so what’s happened is that we’re going through a Klondike phase and it’s got all the errors and problems and tribulations that go with that. I’m not sure twenty years is quite long enough, I mean the statement that patents only last for twenty years is literally true for a single patent but this process which company lawyers of course are awfully good at, evergreening things, so you somehow transmute and start the clock rolling again as you get close to your end, you know you just make something that’s slightly different is the real problem, so I think we shouldn’t underestimate it. On the other hand, certainly viewed largely, whether it’s going to be 20 years or 40 years I think we shall work through this phase. However, I would not focus too much on biology but focus as I’ve done from time to time on society as a whole. I feel very, very pessimistic about the possibility of future survival of our species on earth if we do not fix and move back towards a better social equilibrium. Richer societies are moving rapidly towards a set up which is more Dickensian than the mid part of the 20th Century and I think that this is giving rise to increasing unrest both within nations and between them and I see the things we’re dealing with tonight, the biological discrimination of the problems of this as just a microcosm of the greater need to make our societies world wide more equitable, thereby making the world not only humane but prosperous and also secure, because the roots of the disquiet which we hear about, the war on terrorism and all of this nonsense, is not really to do with guns, it’s to do in the end with people being unequal and we’ve got to move forward that way otherwise we shan’t survive.

Robyn Williams: Sir John Sulston ending our Science Show forum, Who Owns your Genome. It came from the Australian Museum in Sydney. John Sulston won the Nobel Prize for Medicine in 2002. Kris Barlow-Stewart is a genetic counsellor and Clive Hamilton is at the Australia Institute in Canberra. Next week, the Prime Minister’s Science Prize, I’m Robyn Williams.

Guests on this program:

Sir John Sulston

Dr Clive Hamilton
Executive Director, Australia Institute

Kristine Barlow-Stewart
NSW Genetics Education Program
Royal North Shore Hospital
St Leonards NSW 2065

Further information:

Australian Law Reform Commission
Release of Issues Paper 27:
Gene Patenting and Human Health

Australian Law Reform Commission
Essentially Yours:The Protection of
Human Genetic Information in Australia

Polly Rickard

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Race, Health Care and the Law
Speaking Truth to Power!
Who owns the Human Genetic Code

Vernellia R. Randall
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Bridget Ammons
Health Care Law
The University of Dayton
Spring 2000
Since 1980, the U.S. Patent and Trademark Office (PTO) have awarded patents on the cellular structure of living organisms. Recently, the subjects of these patents have moved to human cells. Because of the personal nature of the human genetic material, the issue of patenting genes has spawned a controversy.

Proponents of gene patenting claim such patents are justified as a reasonable reward for investor risk and the hard labor of the researcher. Opponents of granting gene patents claim there is substantial difference between bio-patents and traditional subject matter, because bio-technicians manipulate genes rather then invent them.

Whether the United States Patent Office should issue patents on gene sequences is a difficult question. It involves complex laws and complex science, as well as a whole host of social, religious, and moral aspects. The question of whether genes should be patented is one where the efforts of research scientists and the progress of science must be balanced against free access public knowledge of their genetic heritage. One author has described this as a battle of universal heritage vs. reward for human effort.

Three principle arguments have been articulated against DNA sequence patents:

(1) Patents should only be granted to inventions not on something that is a discovery of nature. DNA sequences are a discovery of nature and therefore, not patentable.

(2) DNA sequence patents potentially restrict research in particular areas and may inhibit progress in medical research in the treatment of a disease.

(3) DNA sequences patents are morally objectionable because the patent creates a property right in the building blocks that make up mankind.

(1) The effort involved in locating, characterizing, and determining the role genes play elevate the discovery of their sequences to the status of an invention not merely a discovery.

(2) Discoveries of this nature are expensive, in terms or time and money; thus, obtaining a patent may be the only way that companies or organizations can protect their investments.

(3) Patents may promote research and development because patents facilitate focusing of effort and inhibit duplication of research. [5]

During my research, I learned of the concerns that minorities have about the genome project that I had not occurred to me previously. For example, the concerns of African- Americans with the information produced from the Human Genome project are far ranged from misrepresentations in taxonomy to defining minorities in a "biological underclass". Therefore, Howard University launched the African- American Diversity Project, intending to bring African-Americans into mainstream genome research and to ensure that genetic medicine does not pass by the African -American population. Another project, called the Human Diversity Project collected biological samples focusing on populations that have been geographically isolated or have distinct culture and language. The material would be shared with scientists worldwide for research on human history and biology. The information could be used to construct genealogical trees and may be used to answer the question: How much do individuals vary from the composite "reference" sequence that will emerge from the human genome project. When researchers first developed the HGDP, they misjudged how indigenous groups, which were listed, as relevant to the study, would perceive the idea. Groups representing indigenous people, such as the World Counsel on Indigenous Peoples (WCIP), were outraged that specific populations were being "targeted" without prior consultation and dubbed the HDGP the "vampire project." Others accused the researchers of racism and "genetic colonialism."

Also During my research, the topic of gene sequence patents was very newsworthy. First, the government-funded Human Genome project (HGP) and Celera Genomics decided such collaboration was impossible. The initial intent was to merge research, so that the merged HGP/Celera Database would be more complete and more accurate. However, collaboration was found to be impossible, due to HCP's responsibility to provide the public all information in its databases and Celera's responsibility to its shareholder's to protect to intellectual property aspects of its databases Second, President Clinton and British Prime Minister Tony Blair issued a joint statement regarding the HGP/Celera fiasco, saying, "Raw fundamental data on the human genome…should be freely available

The following articles are included in this bibliography:

* A bitter battle over insulin gene; University of California loses patent suit against Eli Lilly
* Celera and NIH's Doomed Romance
* Celera: Genome Map Complete
* Genetic diversity project tries again; Human Genome Diversity Project, includes related article on African-American project
* Genome Research: Fulfilling the Public's Expectations for Knowledge and Commercialization
* Genomic sequence information should be released immediately and freely in the public domain
* Patent Law and Human Genomics
* Patent law for non-lawyers and genetic engineering for non-scientists
* Religion and Gene Patenting: rift between scientists and religious leaders
* Human Genome News, Should the Public-Minorities in Particular- Be Concerned About the Human Genome Project?
* The Human Genome Program
* The patenting of DNA; concerns that may impede innovation and cooperation.
* Universal Heritage v. Reward for Human Effort
* U.S. Patent Policy Unaffected by the US/UK Statement on Human Gene Sequence data

Annotated Bibliography
· Department of Energy Office of Biological and Environmental Research, The Human Genome Program, (visited April 5, 2000)

This site has everything you ever wanted to know about the human genome project as well as links to other sites, genome news, articles, and papers. The site discusses the goals, progress, history, ethical, legal and social issues, benefits, and the science behind the Human Genome Project. The Human Project's goal is discover all the genes within the genome (approximately 100,000 human genes), make them accessible for further study, and to determine the complete sequence of the 3 billion subunits. This is quite a feat considering that if the DNA sequence of the human genome were compiled into books, it would equal 200 volumes the size of the Manhattan phonebook and would take 9.5 years to read aloud

The Human Genome Project is an international effort to sequence the human genome begun in October 1990. The project's expected completion date is in the year 2003. The Human Genome Project is made up of the Department of Energy's Human Genome Program and the National Institute of Health's National Human Genome Research Institute. Many laboratories around the United States, numerous colleges, and universities receive funding from the Department of Energy or the Department of Energy to do human genome research. Eighteen countries have established human research programs.

Patent Law for non-lawyers: Patent Law for non-lawyers:

This section of the website covers the types of patents and requirements. This section is focused on patent laws applicable to genetic engineering and biotechnology. A patent gives one the rights to prevent others from making, using, offering for sale, or selling an invention in the United States or importing the invention in the United States. U.S. patents are only valid in the U.S. Utility patents are granted to an individual who invents any new and useful process machine, manufacture, or composition of matter, or any new and useful improvement thereof. There are three basic requirements for a utility patent; non-obviousness, novelty, and utility. After the patent expires, the public can freely make use of the subject matter of the patent.

There are time limits for patents. First, one cannot patent subject matter that has

The website is a simplistic overview of patent laws but gives practical advice to

Genetic Engineering for non-
scientists: Genetic Engineering for non-scientists:

The website defines genetic engineering as a heritable, directed alteration of an organism. The website describes genetic engineering as the most powerful and least understood tool of biotechnology. The Human Genome project does not involve genetic engineering but it is important in arguments concerning parenting. This website gives an easy to read explanation of basic genetics.

DNA is the building blocks of matter contained in all life. DNA is made up of genes that give us many of our physical characteristics. All the DNA in our cells is contained in 46 chromosomes. Chromosome is basically a long piece of DNA coiled up. Humans get 23 chromosomes from their mother and 23 chromosomes form their father. Thus, an egg cell will contain one each of chromosomes 1- 22 and have one X-chromosome. A sperm cell will contain one each of chromosomes 1- 22 and either one X chromosome or a Y chromosome.

DNA is a long double-stranded helix. Each stand of DNA in the helix is said to be complementary. Complementary is that one strand of DNA determines the sequence on the other. DNA is a long ticker tape with written instructions or genes. Genes are discrete units of information that tells the cells what to do. There are controls that ensure that the correct genes get expressed in the correct tissues. There are systems in cells that read the DNA and translate it into proteins. DNA contain the instructions and proteins carry these instructions out

· >Kristen Phillipkoski, "Celera: Genome Map Complete" (visited April 4, 2000)

The private company Celera made the announcement on April 4, 2000, officially beat the Human Genome Project in mapping the human genome. The company finished the staggering task of located and mapped all 3 billion units of a human being's DNA. Celera stated that they will publish the sequences on the Internet with no restrictions for researchers to use the information. To map the genome, Celera used the largest civilian supercomputer and a "shotgun technique" [28] to put together the sequences. A Celera's scientist developed the algorithm for the shotgun technique the company used to map the genome of the fruit fly. Celera has plans to patent 500 genes. They had filed for 6,500 patents on gene sequences and submitted the paperwork on the genetic information but will only follow through with the patents on genes that may have significant for drug development. The company's stock price surged and was the volume leader on the New York Stock Exchange after Celera's announcement.

It is amazing that Celera finished the mapping the genome in such a short time. Mapping is only the first part of the objective of both Celera and the Human Genome Project. Mapping the genome is just finding where the genes begin and where the end. The Human Genome Project has not done accomplished this yet. The method that Celera used is controversial in the scientific community. The Human Genome Project is using techniques that are more slow and common. Celera being finished mapping the genome does not mean that they have not elucidated the actual sequences of all the genes. The sequences themselves are the most important part of their objective. Although, this announcement may scare some people because a company will finish sequencing and "own" medically important genes. This does not mean that Celera will be able to get a patent. That will be something for the U.S. Patent Office to decide.

· Patricia Kahn, Genetic diversity project tries again; Human Genome Diversity Project includes related article on African-American project, 266 Science 726 (1994).

Human Genome Diversity Project:

Genetic researchers from Yale University and University of California at Berkeley developed the Human Genome Diversity Project (HGDP). The primary purpose of HGDP was to study the genetic basis of disease susceptibility. HGDP's plan was to (1) prepare cell lines and DNA from blood, hair or salvia samples taken from anonymous individuals in different populations and (2) prepare databases of information accumulated about these cell lines and DNA. The collection of samples was to be focused on populations that have been geographically isolated or have distinct culture and language. The material would be shared with scientists worldwide for research on human history and biology. The information could be used to construct genealogical trees and may be used to answer the question: How much do individuals vary from the composite "reference" sequence that will emerge from the human genome project.

Due to the controversy, the International Bioethics Committee of the United Nation's Educational, Scientific and Cultural Organization (UNESCO) will set up a subcommittee and hold hearings to ensure that, if HGDP goes forward, all groups of indigenous peoples will be able to speak on these issues and international guidelines for the project or projects similar to HGDP will be defeated.

This article is interesting because it gets it set forth the controversy in detail and offers opinions from both researchers and indigenous groups. The article also demonstrates how political and social issues are intertwined with scientific ones and points out those researchers who ignore political and social issues do so at their peril. Perhaps, the initial errors in HGDP were a failure to communicate and a failure to encourage participation from leaders of indigenous groups, from leaders of indigenous groups from the beginning of the project. In that way, guidelines would be drifted and the HGDP, if agreed upon by all parties involved, would be felt to be an example of international cooperation rather then colonial exploitation.
African-American Diversity Project:

Immunogenetist, Georgia Dunston, of Howard University launched the African- American Diversity Project, intending to bring African-Americans into mainstream genome research. This project is to ensure that genetic medicine does not pass by the African -American population. Dunston concern is based on the fact that virtually all-human genome research is done on samples from Caucasian donors. This is particularly disturbing when scientists known that Africans are oldest and most genetically diverse people. The lack of knowledge of the genetic information will have severe effects on medicine, such as tissue typing for organ transplants in African-Americans. The key to knowledge is to have biological material from African- Americans to study and that is where Dunston's African-American pedigree project (G-RAP) comes in. Dunston's project has as its primary objective the identification and characterization of DNA polymorphic markers that will be useful in mapping genes underlying diseases or susceptibility of diseases common in African-Americans.[24][24]The long-range goal of G-RAP is to improve the health of African-Americans through research on DNA variability. This project also helps Howard University students to receive training and conduct research in genetics thereby increasing the African American scientist participation in human genome research.

I think the Human Genome Project should ensure that researchers sample a diverse population of races so the composite genetic[24]The long-range goal of G-RAP is to improve the health of African-Americans through research on DNA variability. This project also helps Howard University students to receive training and conduct research in genetics thereby increasing the African American scientist participation in human genome research.

I think the Human Genome Project should ensure that researchers sample a diverse population of races so the composite genetic

Karl Theif, "Celera and NIH's Doomed Romance" visited March 14, 2000).

After recent discussions about how to potentially merge genomic databases, the government-funded Human Genome project (HGP) and Celera Genomics decided such collaboration was impossible. The initial intent was to merge research, so that the merged HGP/Celera Database would be more complete and more accurate. However, collaboration was found to be impossible, due to HCP's responsibility to provide the public all information in its databases and Celera's responsibility to its shareholder's to protect to intellectual property aspects of its databases.

These early discussions apparently envisioned an alliance similar to Celera and National Institute of Health's cooperative effort to complete the fruit fly genome earlier this year, in which public data was compared to Celera's own work, merged and jointly published. But the potential commercial value of the fruit fly data is insignificant to that of the human genome.

With respect to the human genome, Celera's data released for "pure research applications," [26] but would restrict any commercial use of its proprietary data, whether it is by a databases provider or a drug company. The problem with the merging of the databases is that it would involve the works of both the public and private efforts, so each group's interests would be inexorably tied up in the work.

This conflict has served to enforce the growing stereotype of biotechnology companies as greedy corporations that have power to deny the public rights to their own genetic make-up. President Clinton and British Prime Minister Tony Blair have issued a joint statement regarding the HGP/Celera fiasco, saying, "Raw fundamental data on the human genome…should be freely available to scientists everywhere." [27] Unfortunately, the message taken by investors, demonstrated by the recent plunge in the biotech stock market, is that corporations having hampering the progress of science and the government intervention are coming quickly.

This article clearly sets forth the problems inherent in allowing patents based on human genome data. The way the system operates today allows public information to come second to private stock profits.

Bridgid Quinn, "U.S. Patent Policy Unaffected by the US/UK Statement on Human Gene Sequence data" (visited on March 20, 2000)

This is the United States Patent Trademark Office reaction two days after the joint statement made by the United States and the United Kingdom concerning human genetic sequences. The statement issued by President Bill Clinton and British Prime Minister that urged "raw fundamental data on the human genome…should be made freely available to scientists everywhere." The Patent Office stated that genes and genomic inventions remain patentable.

I think the impact that the joint statement between the U.S. and U.K. had on investors and the stock market was very reactionary. The investors apparently believed that this statement meant that government were going to step in and render genes sequences un-patentable and therefore, the biotech industry would no longer be profitable.

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