The Gene Patent Question

This video was made possible by Skillshare. Learn what you want to learn with
Skillshare for free for two months at the link in the description. Imagine an patented apple. Just like only Nabisco can sell Oreos and
only Unilever can sell Marmite, imagine there was only one
company worldwide with the right to harvest apples. That would be ridiculous, wouldn’t it? Now imagine a patented gene sequence. Imagine a single company had exclusive rights
to all usages of a particular section of the human genome. That would also be absurd, right? Back in 1990, renowned geneticist Mary-Claire
King made an announcement that shook the world—she and her research team had
discovered that somewhere in this section of the
17th chromosome was a gene linked to breast cancer. She didn’t know exactly where it was,
or what it was, or why it was linked to cancer, all she knew was that it was there. What
followed was a race to find this so-called “breast-cancer gene.” Colleges, companies, and
governments all devoted enormous resources to finding the gene that could tell people,
with relatively accuracy, whether they would contract
cancer years before any other test. With
preventative mastectomies, survival rates for this type of cancer could skyrocket. Then, in 1994,
it happened. A team of researchers from the University
of Utah announced they had found the gene—BRCA1. Soon after, they found another similar gene
with nearly identical affects —BRCA2. Females found to have a mutation in one of
these two genes have an 80% chance of contracting breast cancer in their
lifetimes, but the good news was that you could
test for it. This was a life-changing breakthrough for
the thousands found to have the mutation yearly. Some of the researchers from the University
of Utah saw the commercial application of this and founded a company—Myriad Genetics—which
soon patented the two genes, quite literally. In their patent document is the full genetic
sequence of the BRCA1 gene. 21,328
characters of G’s, C’s, A’s, and T’s that represent what is in the human body. They patented
something inside you, something not all that different than patenting that apple. The apple is too
just a long sequence of G’s, C’s, A’s, and T’s. The only difference is that it’s longer. Myriad
genetics, as the only company globally allowed to do anything with the BRCA genes, had an
absolute monopoly on testing. If you wanted to see if you had the gene mutation
that would give you a heads up on cancer, you had to
go to Myriad, and so it came at a price—up to
$4,000 even though the actual process of performing the test cost only a fraction of that. This was almost certainly unjust, and so the
ACLU took notice. They, along with a
group of plaintiffs, sued Myriad Genetics on the basis that their patents were on non-patentable
material—the human genome. Much like you can’t patent an apple because
you didn’t create the apple, the plaintiffs argued that Myriad
couldn’t patent the genes because they didn’t create them, nature did, but Myriad was not
alone in the process of patenting genes. In
fact, at the time, 21 percent of the human genome had been patented. The District Court
ended up ruling in the plaintiffs favor, so Myriad appealed and the case went to a Federal
Appeals court that ended up ruling in Myriad’s favor so the ACLU petitioned for their case
to be heard in the Supreme Court. They agreed, and on April 15th, 2013 the case
of the Association for Molecular Pathology vs Myriad Genetics, Inc
reached Washington. In a stunning turn of events,
all nine Supreme Court justices sided in the the plaintiffs favor therefore virtually ending
the process of human genome patents, but was it
right? Up to this point Myriad has probably seemed
like the bad guy, but consider this. The
individuals who founded Myriad were the ones that discovered the effect of the gene mutation
in question, so shouldn’t they be rewarded
for their years of work? That’s really the question with
all patents. On one hand patents drive innovation because
they allow companies to monetize discoveries that cost huge amounts to research
and develop, but on the other hand restrictive patents and monopolies stop these innovations
from getting to the people who need them most. Without the ability to make money off of genetic
testing, it can be argued that many companies won’t have the motivation to research genetic
predispositions. So that brings us to the critical
question: what should be patentable? There are certainly cases where patents on
genetic material have helped. In this age
where editing genome sequences is cheap and easy, it’s very possible for companies to
modify organisms in a way that make them true, original
creations that can be legitimately patented. For
example, the apple we talked about at the beginning could not be patented, but a
genetically modified apple—that’s fair game. In fact, patents on genetically modified food
have existed for decades. Golden Rice is a much lauded yet controversial
variety of genetically modified rice that includes a high amount
of beta-carotene which helps treat vitamin-a deficiency
—an affliction that kills up to two million individuals yearly in developing countries. As a crop
that is cheap, easy to cultivate, and already popular in developing countries, a fortified
variety of rice can help millions yearly. The rice does not, however, have much of a
commercial application since the places that need it are the places
without the money to buy other treatments to vitamin a
deficiency. Nonetheless, by holding the patent, the owners
are able to manage the distribution of the seeds by giving them for free to any
farmer who makes less than $10,000 a year while
funding the program with limited commercial applications elsewhere. Although, some companies have a more commercial
focus. 93% of corn in the US is
genetically modified and much of that comes from Monsanto. Monsanto sells different
varieties of genetically modified corn and other crops under different brands just like
you would any other product. There’s SmartStax Rib complete which is
less susceptible to destructive insects; there’s Roundup Ready
corn that isn’t affected by Roundup, a herbicide that kills weeds; and there’s
DroughtGard corn which is more tolerant to lower
levels of water during dry years. When a farmer wants to use one of these variants
of corn they just go to a dealer and buy the seeds
like any other product, except the difference between
seeds and traditional products is that seeds grow into plants which make more seeds. If Monsanto
allowed farmers to keep and share their seeds they would only be able to sell the product
once, so they don’t. Those who buy the product are required to
sign an agreement to not save or share any seed and those who do and get caught are
met by a hefty lawsuit. But this isn’t really
different than any other product. This is their form of rights management. When you watch a
video on Netflix, in the terms of use, you have agreed to only use their product for
yourself just like the farmers agreed to only use the Monsanto seed for themselves even
though, with both products, it’s rather easy to share. Just like with patented gene sequences,
there’s the question of where the line is between patents improving and harming the
greater good. If companies are not able to recuperate research
and development cost, they won’t research or develop. In a free market, farmers can choose whether
or not to buy the Monsanto seeds given the terms and, overwhelmingly,
they do because the seeds make more money than they cost. It’s just simple math. You should form your own opinion on patented
genetically modified plants and seeds, but it’s indisputable that there are upsides
that can be argued, though, what about animals? In
1980 the US supreme court decided that genetically modified animals could be patented if they
were altered in a meaningful way from their original selves. European patent law considers the
same true. In fact, you might already be eating genetically
modified animals without even knowing it. The company AquaBounty Technologies successfully
created a variant16 of salmon that grows at a faster rate and so
they patented it—the AquAdvantage salmon—and in
2016, it hit the shelves in Canada. Researchers have found the salmon safe to
eat, but it is, of course, different. If the genetically modified salmon were to
be accidentally released into the wild, some are concerned that their genetic
makeup could spread by outcompeting the normal salmon, although in computer models it was
concluded that the normal salmon would prevail since it has a higher fertility rate. In the US, the AquAdvantage salmon has been
approved by the FDA, but it cannot be sold until labeling
standards for genetically food are developed. But just imagine the next step. Genetically modified humans are coming and
whether or not companies will be allowed to patent their
processes will have a huge effect on how commonplace human gene editing will become. The Myriad genetics case only decided that
patents on naturally occurring gene sequences were not allowed, but the decision that allowed
patents on genetically modified animals specifically excluded humans meaning that as of now
you would not be granted a patent for human gene editing in the US, but there are plenty
of other countries. Most have not even considered this question. If you imagine a world with patented,
commercial human gene editing, you are imaging a world where you can decide if your child
will have blue eyes or not, if they’re tall or not, if they’re smart or not, if they
are autistic or not, if they will have heart disease or not, if
they will have alzheimer’s or not, if they will have cancer
or not. The real question is not if it’s ethical
to allow patented human gene editing. It’s if it’s
ethical to not. If you want to learn more about genetic research,
there’s a great course that I recommend on Skillshare called “An Introduction
To Bioinformatics.” As you’ve heard
before, Skillshare is a great source of over 18,000 classes about anything and everything. This specific course covers the rather interesting
subject of bioinformatics which is the interdisciplinary field combining computer
science and genetic research building software to analyze genetic information. This one and a third hour course gives a great
overview of the topic and you can access it for free by
signing up for Skillshare at If
bioinformatics isn’t what you’re interested in, you should at least sign up and look at
all their other courses because with so many,
you’re bound to find one you’re interested in. Learn something new in the new year and sign
up for Skillshare here to get two free months of learning.


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