Should You Be Able to Patent a Human Gene?

from TED

A decade ago, US law said human genes were patentable — which meant patent holders had the right to stop anyone from sequencing, testing or even looking at a patented gene. Troubled by the way this law both harmed patients and created a barrier to biomedical innovation, Tania Simoncelli and her colleagues at the ACLU challenged it. In this riveting talk, hear the story of how they took a case everybody told them they would lose all the way to the Supreme Court.

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10 Responses to Should You Be Able to Patent a Human Gene?

  1. Kate Worthy January 29, 2016 at 6:34 pm #

    Can you patent a human gene? This was the question Tania Simoncelli and her coworkers at ACLU wanted the Supreme Court to answer. The US government had made it legal to patent isolated gene sequences limiting to access to test and medical treatment for those in need. Like those who challenged this law I find it absurd that this is a law that ever passed. Anything that has the ability to help advance medical treatment should be utilized as much as possible and given only certain people access to gene sequences was hindering that.
    Not only was it shocking to me that this law passed in the first place but I was even more taken back by the fact that people were so quick to discourage Simoncelli and her team from fighting the law. This law was preventing people from having access to life saving medical advancements and because of that lives were lost unnecessarily. The right to life is not something that anyone should be able to take from you and that’s exactly what this law was doing. Thankfully Simoncelli and ACLU saw this injustice and were willing to fight for something they were told they had zero chance in winning. Genes are the basic level of humanity and they are not something that should be owner by anyone but the person that the genes make up. It seems to me that from what I understand paten law is pretty simple when it comes to patenting things in that naturally occur. If this portion of the law had been carefully considered this outrageous would not have ever been even considered.
    The need from this patent came from companies desire to have a monopoly on medical treatments and from them make a profit and name for themselves. This selfish desire took lives and halted medical advancement. In the business world the goal is to make a profit however the medical field should be fueled by a much more worthy cause, saving lives. This patent law went against that goal completely. Because companies so selfishly threaten to sue other medical companies that were trying to give treatment involving gene sequences that were patented lives were lost and the true reason for medical advancement was forgotten.
    No one should be able to take away a person right to fight for their life. Tania Simoncelli saw this injustice and fought for what was right. Like so many other things in this case the fact that the case had to go all the way to the Supreme Court for someone to see the harm this law was doing is yet again baffling. Luckily the Supreme Court recognized the flaws in this patent law and abolished it but why wasn’t more obvious soon on in the process.
    To me this case highlights major flaws in our justice system for three reasons. The first reason is the oversight that happen in order for genes to be able to be patent. Patent law clearly states that nothing that happens naturally and is a basic law of nature can be patent and that is exactly what genes are. Secondly I am stunned that throughout the twenty five years this law was in place no body tried to fight it. Once lives were lost because of this law it should immediately been brought to light that this went against patent law. Lastly I am baffled by the negative feedback Simoncelli received when she said she wanted to fight the law, and the fact that it has to go all the way through the legal system and reach the Supreme Court tin order for it to be abolished. This case should bring to light just what needs improvement in both our legal system and medical advancement.

  2. Moe Jaman January 29, 2016 at 7:53 pm #

    Tania Simoncelli and her team did a wonderful job getting rid of patents on genes, and in doing so have indirectly helped improve and save many lives as well as many to come. Tania, with the aid of prestigious figure heads in the field of molecular science, was able to turn the Supreme Court on their heads. Not only did they win a case of fighting a patent, when courts highly favor established patents, they influenced the Supreme Court to invalidate the patents on BRCA 1 and 2, as well as ended gene patenting all together.
    The actions of Myriad actually disgust me. From a business standpoint, patenting a gene is genius. Hold the gene for yourself so only you can operate the tests and studies of it. Although, from a human rights perspective, improperly abusing such a power, or under performing can create a huge problem for many who need access to the genes to run test to save/improve lives.
    Not only can such a patent cause medical and life threatening problems, the financial problems to economy and society are also great. Hypothetically speaking, if a corporation has all the rights to owning a specific gene, that could potentially create a monopoly. This would eventually occur as this one corporation was the only one that could study, own, experiment, and run test for this gene. This almost the equivalent of saying, shut down all oil companies except Shell. Now that shell has the right to all of the oil, it can solely sell it and will charge higher, if not ridiculous, prices for the non-create-able resource.
    This mater of patenting a non-create-able “thing” that was so individually specific was also a problem. Usually, companies would patent the formula to a drug, or the buildup of the machines. This way other companies cannot just steal their discoveries and research to start producing their own, same product, to make a profit; stealing the market. In this case, a company would develop their own way to make a product, or change the formula to their product so it can be their own. As a mater of genes, you cannot makes this material. Not can you change the make-up of it, this would result in a totally different of ineffective gene. It is a specific gene of nature.
    The patent gene of BRCA1 is carried by actress Angelina Jolie, who determined after a test that she was at higher risk of developing breast cancer. Jolie herself said that the cost of screening, $3,000+, was an obstacle for most women. This ridiculous pricing to test and anything related to the gene would not cease to an end as there is nothing anyone could do about the prices without legal help. $3000 is no small number for any average person looking to test themselves to see if they are at risk for a horrible disease or death. What Myriad had done, has almost put a price tag on life, by singlehandedly and selfishly holding the rights to information and a gene that can save lives if used in time for testing.
    Tania and her team, with the help of amazing scientist such as James Watson effectively opened the eyes of legislation on why patenting such a non-create-able resource such as a gene was so disastrous to life, health, and wealth. In 2013, after 8 long years, they finally put an end to such “lunacy”, and helped improve the lives of many who did not have access to, or could afford the help they needed to save their life.

  3. Liz Martinez January 31, 2016 at 12:54 pm #

    This Ted Talk is about patenting genes, and how ten years ago this was actually legal. I was as outraged as this woman was when I heard this. How can people possibly try to patent something which could be in hundreds or thousands or millions and billions of people? I was completely shocked when she said that this meant that you could not even ask your doctor to test a particular gene that you have for any mutations, without first gaining permission from the Patent holder. You needed permission to have a part of yourself examined. What if you potentially had cancer because of that gene mutation? And what if that cancer spread because you couldn’t get the permission of whoever owned the Patent for said gene to be tested? What if you spread that gene to your child because you never got it tested, and had no idea how to fix it because of someone else’s greed?
    This act was harming patients, and in fact harming them to the extent that some of these patients died. The law clearly states that you cannot patent things which belong to nature. In this case, how was it allowed that large corporations patent genes which were created in nature, in the human body?
    I hate how long this was allowed to go on (twenty years) and how many people were potentially harmed by this, whether directly or not. I love however, the way this was overturned (by making this a civil rights like court case). I also appreciate that they went after a company which was affecting breast cancer gene testing, because this has a direct impact on my life. My mother had been falsely diagnosed with breast cancer a number of years ago, and has had a gene test done to see if she carried something which potentially put herself, or myself at risk later on in life. The results of these tests came back negative, but now I am wondering if this wasn’t just a false negative like those which the woman in the Ted Talk discusses.
    I cannot believe that twelve percent received false test results because of this patent which never should have been in existence in the first place. I also cannot believe that none of these women were allowed to receive second opinions because of this patent. I agree with the main point of her argument, that you may be able to patent the process of extracting the gene, but not of the actual gene itself, as the gene was not created when it was extracted, but in fact was created before birth. This just seems so absurd to me, but I am glad that it is no longer a problem.
    It is good to know that there are still people out there searching for the truth, because had this woman not noticed the problem, who knows how long it could have been before justice was served. I’m curious to see the long term implications of this later on as gene testing and extraction practices improve.

  4. Caitlin Koska February 4, 2016 at 4:47 pm #

    This Ted Talk from Tania Simoncelli, explores the question, “Should you be able to patent a human gene?” Tania Simoncelli and her colleague Chris, decided to tackle this question because of the harm it was bringing to patients and innovation. At the time, the United States government was allowing people to patent isolated genes. The individuals with these patents could refuse any use of the gene for testing or research, this denying further discovery and making it extremely complicated for patients to have their genes tested to check for mutations. Tania and Chris, along with help from many professionals as well as patients harmed by the gene patents, fought this case all the way to the Supreme Court, and won.

    The first question I had after watching this TED Talk, was who decided gene patenting was okay in the first place? Simoncelli mentioned in the TED Talk that the Supreme Court had made clear that you cannot patent products of nature or laws of nature. A quote from her presentation stated, “The laws of nature, physical phenomena, and abstract ideas have been held not patentable…Such discoveries are ‘manifestations of nature, free to all men and reserved exclusively to none”. To me, this seems pretty clear, you cannot patent something created by nature, and the people patenting genes definitely did not create genes. So why would anyone be approving these patents? How had something that seems so simple to understand be passing by for 25 years?

    The decisions of the company Myriad are infuriating to me. They had a patent on a gene that was a strong predictor of breast and ovarian cancer. However, they selfishly did not allow any other testing options other than their own, and made their test very expensive. To make things even worse, they did not properly update their test and this led to an estimated 12% of incorrect test results, telling women they did not have a mutated gene, when they truly did. Myriad created a brilliant monopoly for themselves that probably made them a good amount of money, but this was at the expense of the health and lives of real people. I think today the lack of ethics in business are a real issue. There are too many examples of businesses taking advantage of innocent people for their benefit, and this Myriad example was one of the worst I have heard. Women weren’t able to get tested because it was so expensive, and some women were told they were going to be okay, only to later be crushingly diagnosed with cancer.

    I also think it is important to mention how impressive Tania Simoncelli, and her team’s approach to this case is. Simoncelli mentioned that they decided not to approach the case as a patent case, but instead a civil rights case. If the team set out to fight the case like a typical patent case, they would have probably been unsuccessful. So, they presented the case as a much bigger issue, because it was. The patenting of genes, as said before, was hurting scientific advancement and patients. The team also brilliantly used personal stories and concrete examples of people and organizations that the patenting was hurting. They turned the case from a fight of complicated patent law to a more simplistic argument using a lot of pathos mixed with basic metaphors, so that almost anyone could see they were right. The way Simoncelli presented herself during her TED Talk was also very likeable, knowledgeable, and passionate about the topic which helped strengthen her argument. Lastly, although this is a very minimal part of the entire TED Talk, I was very impressed by Tania Simoncelli’s presentation skills. She made the complicated topic easy to understand and interesting to listen to.

  5. Austin Cordero February 6, 2016 at 4:15 pm #

    In this TED Talk, Tania Simoncelli presented her story of a battle that lasted nearly a decade. For about 25 years, it was perfectly legal to place a patent on human genes. Tania and a lawyer she worked with found this idea absurd and wanted to challenge it. In the end they were successful and managed to change this law as well as the medical industry in a huge way. The court battle made its way up to the supreme court, and ended in a unanimous decision.
    The fact that a case like this had to be brought to the supreme court is absolutely absurd in my opinion. Patents are meant for ideas, products, or inventions that are constructed. Tania and her team came up with a few metaphors to show how an isolated human gene is not something that can be considered patentable. For example, if a company used an intricate process to extract gold from a mountain, they still would not be able to patent the gold, only the process for extraction. Genes are like gold in this situation. They are naturally occurring in nature and similar to a mineral or an element, should not be something that is patentable.
    On top of the idea being ridiculous, people were dying because of these laws. If a company had a patent on a specific gene, no other doctor or researcher could use the gene without the consent of the patent holder. Tania brought up an example of a girl who was just 10 years old that could not properly be diagnosed with Long QT due to the testing process required for diagnosis needing a gene that was patented by a company that already went under. This young girl ended up dying. That is absolutely inexcusable and it is a wonderful thing that Tania and her team were able to fight and get this law overturned.

  6. Rose T February 8, 2016 at 11:42 pm #

    When I first started listening to Professor Shannon’s argument I thought it makes says why you can patent a human gene. If private companies are spending a lot of time and money on extracting a gene and doing the research it makes sense they should be allowed to patent. Otherwise there is no incentive for these companies to do research because once they extract the gene anyone else around them can use the information without spending the time or money. However after watching Professor Shannon’s argument and being more educated on the situation I understand why you can longer patent a gene.
    Many of Professor Shannon’s points made me think twice about my view point. The first one was the point that it is already established that things in nature and things essential to life are not allowed to be patented. Like she said how is it that the thing that makes up all human life is allowed to be patent then. Also genes are found in nature even though you taking them out of the body and into a lab they are still accruing in nature. Also the fact that she used emotional appeal really resonated with me. When she said the 7 year old had a chance to live but because the company who patent the gene went out business they could not help her and she passed away. That does not seem right. The business side of me thinks that these companies now have less of a motive to extract these genes however having the right to patent the genes was doing too much harm.

  7. Spencer Ross February 10, 2016 at 1:00 am #

    Every living thing has a unique genetic code produced that is inherent to themselves. Massive genetics companies like Myriad Genetics have registered and passed U.S. patents proclaiming the rights to the testing of specific human genes. Organizations including the American Civil Liberties Union (ACLU) and the Public Patent Foundation (PUBPAT) fought a lengthy legal battle against Myriad Genetics that reached the Supreme Court of the United States. The Supreme Court found that “a naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated”. This Supreme Court ruling brought a huge change to genetic industry as well as the health industry. Previously to this case ruling is was estimated “that a fifth of the human genome is subject to patent claims”. This meant that vast amounts of the human genome were protected under patent law so that only these companies could perform tests on patients to analyze these genes. Now these patents were on a singular gene itself, usually one of notable significance as to the specific cause or link to an illness or ailment. The patented gene gave rights to a company like Myriad Genetics to exclusively test patients for a mutation in their BRCA1 and BRCA2 genes on chromosomes 17 and 13 respectively. These tests were created to determine whether or not there is an increased chance of the patient having breast and ovarian cancer. Having a patent that allows the monopoly of tests being done on this specific gene creates an unfair economy and a system in which many consumers may not be able to afford or receive such tests from the monopolistic company for a variety of reasons. This may be able to be said for anything that is protected by a patent, but when it comes to health care and people’s lives are at stake than nothing should stand in the way of a person’s treatment or diagnosis of an illness. The Federal Government is charged with protecting the general welfare of the citizens of the United States, and restricting some of its citizens by issuing patents on something like a genetic test for increased risk for cancer is scandalous.

    This TED talk clearly describes the process of fighting out the case that allowed for the free enterprise of the human genome. Although the case does not abolish patents being made on cDNA or complementary DNA, this is a legitimate product that was created and is not a natural occurrence of nature. The future is promising for the progression of our health system as increased risks for numerous diseases can be genetically identified in a widespread and collaborative effort. This is all thanks to the Supreme Court’s ruling on this case and the organizations that fought against the patentability of human genes.

    Supreme Court Case: ASSOCIATION FOR MOLECULAR PATHOLOGY v. MYRIAD GENETICS
    http://www.supremecourt.gov/opinions/12pdf/12-398_1b7d.pdf

    Intellectual Property and Genomics
    http://www.genome.gov/19016590

  8. Brianna Havel February 12, 2016 at 11:19 am #

    Giving someone the ability to put a patent on a gene is going against the overall welfare of society. The law clearly states that one cannot be allowed to patent something which belongs to nature, so how was this ever allowed for this long? Throughout history endless research has been conducted on genomes and the human body, yet there is still so much to be discovered. By allowing genes to be patented this gives individuals the right to refuse any form of testing or research on the isolated gene. By restricting access to a specific gene to the majority of researchers one is slowing down the process of finding causes to diseases, developing new cures and grasping a better understanding of the human body. The only reason for patenting a gene is for the corporations to make a profit. This is an act of pure selfishness in business and it took from 1982 until 2013 for the Supreme Court to put a stop to this (genome.gov).
    The company Myriad is the poster child for why putting a patent on a gene is dangerous. They were a selfish company whose choices on how to handle their patent on an isolated gene put millions of women in danger. The gene which they had their patent on was discovered as a huge predictor of not only breast cancer, but ovarian cancer as well. They made the choice to restrict testing on the gene as well as not update their testing of the gene, which led to a total of 12% of tests being inaccurate and giving women false hope. Breast cancer is a common form of cancer more common than ovarian cancer, yet ovarian cancer has proved to cause the most deaths out of any type of cancer (knowbrca). If the company had handled the patent on the gene in an ethical manor and had not simply focused on the profit the patent, the testing for these two forms of a deadly disease could have been improved at a faster rate, giving women the right results to base their next decisions on.

    Work Cited:

    1.) Genome.gov,. “Intellectual Property”. N.p., 2016. Web. 12 Feb. 2016.
    2.) Know:BRCA,. “What Every Woman Needs To Know About Breast And Ovarian Cancers”. N.p., 2016. Web. 12 Feb. 2016.

  9. Angelina Gummel March 5, 2016 at 1:44 pm #

    I do not know how I really feel about this subject just because of the different sides to it. In my global perspectives on health and illness class we talked about how genetics can be arranged so that babies would not be born with certain disabilities. Thinking about the different ways that genes can help people, I am starting to think that it would not be a good idea for doctors to be able to patent genes. If a fetus’s genetic makeup looks like it is going to have down syndrome and there is a gene that is able to stop this children from having it.
    It is not fair that this child will be born with this awful disease just because someone wants to make money off of a gene that will save people. People need to stop and realize that with out this technology there is no way to save people. It is not fair to those that have a certain gene that others are not willing to share their discoveries with those that are suffering.

  10. Sam Sheikh April 10, 2016 at 4:48 pm #

    I agree gene patents are lunacy. It is ridiculous that someone can own a part of my body or genetic code just by finding it. If i find a ten dollar bill on the side of the road that does not mean i own every ten dollar bill to exist. The worst part about this is that the companies who own the patents did not even do the most effective research with it. Their goal to make money caused misdiagnosis in patients causing them to pass when they could easily still have lived a quality life if they had just been diagnosed correctly. I vaguely tremendous pa similar issue where a man wanted to keep the tumor removed surgically but the medical facility would not allow it. There were also cases where women were not allowed to keep their placentas after birth. Why should any person have the right to own any part of our body? Studies of genes should be encouraged and easily available to further research and help more people. This is part if the problem why treatments and cures for various diseases are so limited. When only few people have access to study and work with certain genes it seriously limits the potential to make progress. In recent years studies on genes are skyrocketing on that it is so easily accessible and to hinder it in such a way is ridiculous and hurts the scientific community more than helping it. I think it is ridiculous that rather than help people companies just want to make money or find fame. What she did was amazing and i truly am glad she took this to court so that more women do not have to suffer from something that can be so easily prevented.

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