TAG of the Week: Supreme Court's Decision Myriad Genetics on Monday 4/15 !
[Thank you to two HS320 genomic students for sending this link and NPR clip]
As we discussed earlier in the semester, Myriad Genetics not only holds the patent on the two breast cancer genes, but also '"own the largest database that tells patients what various mutations mean". Myriad also releases these report to 'prospective' doctors and companies. But do they have the rights to release patients' history for their profitability, without notifying the consumer who purchased their product?
On Monday April 15, 2013, the Supreme Court will make their decision on patents. [Class, keep a look-out on the news on 4/15 - the outcome may affect your response or not]. In regards to the court's decisions, genetic researchers are trying to obtain Myriad's database to design studies to understand the association of disease and genetic risk. While it seems noble that geneticists are contributing to the "greater goods with better science" (and not for profit), where do we draw the line between public vs. private causes?
Some questions to ponder in your response:
What do you hope the Supreme Court will decide on? But do you think this database should be made 'public'? Why or why not? Did the article mention anything about the social implications from the patient's perspectives? What are your thoughts on this? Who is advocating for the consumer's right for ownership of their genomic data? Can the consumer of Myriad Genetic refuse for public release of their genomic data (even if it is 'de-identified' - and exactly how anonymous is this DNA information)? [Read/Listen to the second link of a NPR clip on 'Anonymity In Genetic Research Can Be Fleeting']
Supreme Court Article:
http://www.nytimes.com/2013/04/13/health/dna-project-aims-to-make-companys-data-public.html?pagewanted=1&_r=1&
NPR Article:
http://www.npr.org/blogs/health/2013/01/17/169609144/anonymity-in-genetic-research-can-be-fleeting
I think that patients should be aware when having genetic testing that releasing this information is a possibility. From there, patients should be able to choose whether or not this information is shared. I do not think it is ethical for the company to release histories for profit without notifying the patient and receiving their consent. On the other hand, there is possible research and discovery that can be done with this information. Therefore, I feel explaining this to the consumers before their testing will allow them to make a decision they are most comfortable with. Some patients would definitely agree this could better science and support the cause, but others will feel it violates their privacy. Ultimately, it is the right of the consumers to feel how they want because it is there own DNA and medical information.
ReplyDeleteI hope that the Supreme Court decides on making Myriad share their database. I think that the database should be accessible to researchers so that they can make connections between the genes and diseases. But I don’t know if it should be public to the extent that everyone has access to it. This is because even if the database didn’t include any names, people can use the database to come up with ways to lie to people and make them order tests via the internet and give them fake results. Nonetheless, I definitely think that the consumer has a right to know who their information is being released to. I agree with Jillian in that consumers need to be informed of who their test results might be released to so that they can make an informed decision. After the patient knows all that there is to know they can choose whether they want to proceed with testing or not. I definitely think that a lot of good can come from myriad releasing this database to other researchers. I think a lot of great advancements in science can take place if more knowledgeable people have the opportunity to study and analyze the data.
ReplyDeleteBased on numerous articles reporting the raise in stock value of Myriad Genetics, I can only infer throughout all of the difficult language that the Supreme Court looked favorably on the companies argument to patent the database of individual mutations on breast and ovarian genes. Myriad does not want to publicize this information because it would drive a large portion of their business down. They also argue in court that they do not want other companies to even be able to identify the same genetic mutations using their invented methods and technology.
ReplyDeleteI think this is unbelievably selfish for the Supreme Court to support because supporting this decision contradicts the main reason for this study and discovery: to benefit the portion of the population who has this genetic disease and to help prevent it from further deteriorating future generations. If individuals consent to their DNA being used by Myriad Genetics, then they obviously are doing so to further benefit research, so why wouldnt they want to help other companies? I think the only concern is the publication of such DNA without informing the individual first. But as long as all study subjects are informed that the DNA mutations they are offering will be used by medical professionals for Myriad research as well as future research in the same study area, i cannot think of a single reason why anyone would not want to participate.
I think it's ridiculous that the company refuses to share its rights to the research they have been collecting personally. I believe that this research should be open to many researchers and health care professionals so that they can do the most with this valuable information. But I also believe that none of this information of the patients should be released or shared without the patient's knowledge and consent. That is entirely up to the patient to decide in my mind.
ReplyDeleteI think it's counterproductive for the company to continue keeping their information and methods hidden from the public, as Mia had said above. By doing this, their contradicting the exact aim of their program: to help those identify genetic information that could be useful to their health, especially in the ways of prevention of other future generations, and preparation and knowledge to know how to deal with the genetic mutations they may already have.
After watching the breast cancer film in class and becoming aware of the fact that Myriad has ownership of the BRCA 1 and 2 genes, I instantly became frustrated. I could not understand how a single company was able to gain ownership of something that exists in nature. After reading this article, my thoughts have not changed. I still feel as though Myriad does not have the right to have a patent over these genes. I understand that it was the first to discover the genes by completing extensive research, but I do not believe they should have sole ownership over them. I feel as though their database should be shared because doing otherwise goes against what research and medicine is all about. The database should not be public, there should be strict regulations and monitoring of the companies that want access to ensure the information is accurately portrayed and kept up to date.
ReplyDeleteBefore the database is shared though, I think it is most important for patients to know how, why, and by whom their genetic information is being used. Companies like Myriad should not have the right to release patients' genomic data without their consent. Patients should be made aware of the possibility of the sharing of their data so that they can make an informed decision about whether or not they would feel comfortable sharing their genetic information.
I believe that, as many critics have discussed, nature cannot be patented. Myriad has not created any new or proprietary gene, they have simply identified one that already exists in nature. By definition “patent” is defined as; a grant made by a government that confers upon the creator of an invention the sole right to make, use, and sell that invention for a set period of time. This requires producing something that is the first of its kind, in the case of patenting genes, this is not the appropriate use of patent law. On the other hand, even if the court rules in favor of accepting patentable genes, these patents do not last forever, eventually the data will be released to the public (although a patent may last up to 20 years).
ReplyDeleteIt is clear to me why genetic testing causes controversy. When the possibility of financial gain and lost privacy comes into the picture, the controversy only builds. Genetic testing has been proven to save lives. According to Myriad Genetics, they have spent over $500,000,000 over 17 years in order to help women determine whether they are at risk of developing hereditary beast, colon, uterine, and ovarian cancer. According to the article "the company was able to amass a huge database that tells which DNA changes increase cancer risk and by how much, and which are inconsequential blips in DNA" The article also notes, that Myriad is keeping this data to itself.
ReplyDeleteIt appears to me that the Supreme Court rules in favor of Myriad Genetics and the security of their database. In my opinion, this decision is surprising as I strongly feel the Myriad database should be available to all researchers, as it provides vital information for the well being of society as a whole . In terms of the consumers, I feel that as they consent to the testing and give Myriad Genetics the ability to use the genetic information for research, they obviously are seeking to enable life saving research. However, I do not believe that anyones genetic information should be shared or released without individuals consent.
Myriad Genetics prides itself on the ability to evaluate cancer risk in individuals. Myriad claims to provide the knowledge necessary to make informed decisions and promote cancer prevention. However, by limiting access to their database, the company fails to promote general well-being as they prevent research outside of their company.
This question of gene patents was one I was very glad to see go to the Supreme Court. I can easily see both sides of the question and as it was a very confusing and complicated situation, I was very interested to see what the Supreme Court would say. I'm surprised there hasn't more news coverage of the case. I think the database should eventually be made public, because there is such a wealth of information in that database that someone may find alternate uses for that Myriad would not. I understand the Supreme Court's caution in protecting the rights of those who are investing in cutting edge medical technology. They do deserve something in return for the contribution they are making to society and medical research, even if we do not agree in how they are going about it.
ReplyDeleteThe concept of de-identifying genetic information isn't one that I had previously considered, however I believe now it is very important to consider. DNA is inherently traceable, so even if you don't release any identifiable information with the DNA, it is not completely anonymous. While I don't think the average person is going to go sifting through this database for information on a future employee or partner, it could become misused by companies offering background checks including genetic information, and health insurance companies, if they are not kept in check.
This topic seems to get more complicated every time I look more into it, so I am anxious to hear what the Supreme Court thinks and how they view the situation.
I know this debacle is one that the Supreme Court has taken very seriously and it should be considered from all points of view. I think Myriad does have the rights to make profit from their patients history, but they should notify their consumers who purchased the product. A law must be in place to protect the patients privacy rights by having strict security. I don't see why these DNA samples can be used for further research if the samples are kept under top security. I think patients consent might be too much of a hassle to coordinate with companies that are interested in conducting research. The database should be accessed by many research companies because it is right for the advance of medicine and the future of cancer prevention. I will be interested to hear about the Supreme Court's decision and I will keep posted on the news.
ReplyDeleteI will play Devil's Advocate for a second and address the issue of hierarchy. Why is it that we make such a large issue of basically patenting something we don't even know we have unless screened for, but for many medicines that are only owned by private companies we do not see that as a problem? I understand it is difficult to comprehend the idea of patenting something that we may or may not have and is part of our DNA and basically in nature. I do not believe that the patenting of this gene is anything to be taken light of and I also do not believe it ethical, but this should only open our eyes to the many other problems in the medical and genetic field. How is it that the pharmaceutical companies make up most of our wealth in this country?! It's frightening to know that our money is going towards research and patents such as this. As a couple of my peers have mentioned I do feel Myriad as a business should accrue finances from the people who purchased it, but have a formal contract to ensure the privacy of the patient's history. The research done with that history must be in compliance with the patient and the patient should be briefed to where their history may end up. I do not think that this patent should even exist, but for the sole purpose of making Myriad a monopoly.
ReplyDeleteI think that the Supreme Court will rule in favor of Myriad and the security of their database. While there are no names of patients or identifiers, making the database completely confidential, the data will be exposed. With all of our new technology, it wouldn't take too much effort to find out which information belongs to which individuals. While publicizing the data could be for the greater good, many of these diseases that are being tested for aren't highly infectious. For example, going back to the Jacobsen vs. Mass case, the Supreme Court ruled that Jacobsen had to get a vaccination for smallpox because it was for the greater good of the community. In that case, smallpox is very contagious and can be spread through the air. This is not the case with Myriad Genetics and the genetic information they have in the database which is why I think the Supreme Court would choose to side with Myriad. I personally believe the database should be made public; just so more researchers could have access to have it. This would allow more experiments and research to be done to maybe lead to a greater chance to finding cures or treatments for many diseases that are written off as fatal now. Maybe there could be a way where consumers could give permission for their data to be shared with other genetic research companies, just so ethics doesn't have to be as much of an issue as it is.
ReplyDeleteI think that patent ensure the financial incentive necessary to stimulate creativity. As such I agree with Liz that Myriad's patent will be protected. This patent comes at a cost to patients who are unable to seek a second opinion as well as researchers whose access to information Myriad's patent is blocking. The information that Myriad is hording could be life saving, but as long as the patent is in place we will never know. Genetic tests are not subject to review by the FDA as such the patent is inhibiting peer review of the test. What if the test's results are not as conclusive as Myriad is claiming and women are removing ovaries, breasts, and taking the risks associated with general anesthesia because of an inconclusive test result? I support Myriad's right to make a return on their $500 million investment but at what cost? Its safe to assume they have earned back $500 million and change from being the sole provider of the test for 17 years and providing millions of tests. Is it fair to cap profits to ensure that they are not derived at a cost to the patient. At the end of the day Myriad's "customers" are patients. Medical technology companies should operate under the same code that medical providers are obliged to follow: do no harm. Myriad's profits and secrecy are harming patients.
ReplyDeleteI believe that Myriad should have to share their database of genetic information with other groups/ researchers. I do agree that they should be compensated for the work they do, but I think they are being selfish and only concerned with making a profit by not allowing others to research the genes they have patents on. Overall, I do not agree with the patents and do not believe that nature can be patented. I think by not sharing the database it takes away from the overall good of science. It shouldn’t matter who is most successful when researching genes that can be deadly to many women. Yes it is a competitive world, but in areas like this, researchers should come together to help save lives- not make profits. In addition, there should be privacy laws set into place to keep people’s genetic information confidential. It is too easy to identify people from public databases. The information should not be made public and companies should not be allowed to sell one’s genetic information without consent.
ReplyDeleteAs I respond to this blog my mind is remembering previous similar articles in regard to publicizing genetic information as well as monopolizing the industry. The funny thing is, is that my opinions have not changed since the last time I wrote. Which I think is a good thing, because it shows that the opinion I hold is of some kind of importance to me.
ReplyDeleteUnless Myriad has obtained permission from clients about releasing their genetic information, then Myriad has no right to do so. What makes me really mad is that Myriad is trying to make a profit off of people’s genetic information, and that they would consider sharing this private information without permission from the clients themselves. As if Myriad wasn’t being selfish enough with their Monopoly on the industry, now they are trying to release reports to doctors. It seems like they can’t decide what they want to do. At one moment all the information and technology is theirs because they have the patent, the next moment they are trying to make a profit by releasing reports to “prospective doctors and companies”. Honestly I have no idea what their motives are, but I can assure you that unless the Supreme Court and the United States starts putting policies in place to protect patient genetic information, we are going to have big problems on our hands.
I am not going to discuss whether I believe the data base should be made public or not, because I believe there are many arguable points for both sides. Some would say that making it public would increase research opportunities. Others would say that the more public the information the more susceptible people will be to insurance policies. However, before anything happens, I believe that policies must be put in place to protect personal genetic material. After these policies are in place I really don’t mind if the databases go public or not, I only care that the person’s genetic material is protected under law.
As I have stated previously in my blog posts, I do not feel as though genes should be patented. This is because it decreases competition and sets up the environment for monopolies to form, such as the Myriad case. As a result, this it can hinder the motivation for progress in other companies to compete, as well as the quality of research occurring. When it comes to isolating, testing, and determining the genetic cause of a disease, having data is essentially equivalent to having power. The research required to attain this data does take money, therefore the work done by Myriad definitely does deserve a significant amount of credit and monetary reward, but this can be given in ways other than a patent. Although I hope the supreme court favors open genomics, I believe that if the public wants access to this data they should have to pay for it. Additionally, they should be allowed to save their own genetic data and have the option to put it into a collective knowledge database. This is because collaboration is the key to finding the genetic causes of diseases and should be used in research rather than one monopoly controlling everything. The more brains and ideas for innovation, the better the outcome. Therefore, eliminating this necessary component by supporting the right to disclose specific information that’s beneficial to a company is debilitating to the progress of medical research. Rather than trying to inhibit the research of other companies, each company should be focusing on their own research and working together to help improve the medical field for the benefit of society, not for an increase in their paycheck.
ReplyDeleteThese controversial gene patenting stories raised several concerns according to an article I was reading. A prominent concern mentioned was the “tragedy of the anti-commons”. This addresses “the possibility that the large number of patents on genes and their diverse set of owners will make it difficult to acquire the rights to all necessary research inputs, which could, in turn, result in the under use of valuable technologies”. Another issue is the concern that the owners of patents on fundamental technologies will exercise their rights to exclude resulting in preventing others from developing or accessing the technology (thus slowing down the rate of progression of medical research). This Myriad case was held out as an example of the coming problems associated with human gene patents . Such restrictions on access to patented genes can be seen as harmful due to the fact that genes play such a unique role in biological processes. It seems unsettling to put an ownership property on something that we all have an inherent right to.
As my classmate Jessica has pointed out, the concept of de-identifying genetic information is definitely a less obvious, yet equally important implication to consider. Although no identifiable information is released with the associated DNA, we all have unique DNA, therefore it can be traced back if enough time is invested in doing so. This could lead to gene discrimination in society.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2701726/
I hope that the Supreme Court will decide against Myriad. I think they should make their database public. By keeping their results and interpretations to themselves, they are preventing other clinics from accessing the information, and thus taking away access to this information from potential patients. It is unfair to many people who might not have access to Myriad. What do they do then, and who do they turn to? It also seems sketchy that they are unwilling to share their data as well. I guess I trust their research to an extent, since it has been proven successful in the past. However, second opinions can only solidify what they have, so I don’t understand their reluctance. From a personal standpoint, I think I would feel a lot more secure about my genetics test if I knew that more researchers had looked at my mutation and have come to an agreement, rather than just one company telling me about my results. Thus in the first article, I think the other clinics are taking the right approach by trying to gather as much information as they can.
ReplyDeleteI thought the NPR article was a good way of showing the possible issue of privacy, based on what the other researchers were doing in the first article. Although they are trying to compile the information on Myriad data from other people, they might not be respecting their right to be anonymous since they can trace their DNA back to them. The article mentioned social implications in which, by being able to trace the DNA back to the individual, the individual might be subject to discrimination. A balance is needed between research and public display. The article does mention, however, that some people are okay with displaying their DNA, which I found to be pretty interesting. Therefore, the research should all be done on a voluntary basis. Based on the study that was done in the NPR article, I do think in this day and age, it is extremely difficult have privacy. There are vast social media websites and other ways to identify people and their family. Even I find myself facebooking a person before I even meet him/her. Although people are taking initiative to better protect individuals’ DNA, I feel like there is only so much that can be done. At this point, I think the best we can do is work on discrimination policies
As many of my classmates have said, Myriad should share their information and not patent it. It is definitely unfair to many patients and other clinicians that could use this data. Myriad has not invented anything new, they are simply genotyping a person's DNA. Myriad can definitely still make money by charging patients before they do any testing, but after that, they should not have the right to own anyone's DNA. This is simply like asking whether an individual owns his/her DNA. It is a part of them, not Myriad.The NPR article makes a good point by saying that there should be a balance between making genetic information open to the public and protecting a person's privacy. I really hope that the Supreme Court finds this balance between protecting a person's privacy and access to information about DNA that can potentially help save thousands of lives.
ReplyDeleteI hope that the supreme court overturns the patent of these genes as this test is becoming more and more expensive and people are less able to afford the testing. If there was no patent then other companies could do the testing driving the price down as there would be competition which is now not present. Myriad genetics did not invent anything for which they have a patent they should not be forced to share their own information but other companies should be allowed to work on this testing as well. The database as it sits should not become public because it is easy to identify the people who are on it this violates the subjects privacy. This testing is suppose to be done anonymously but the study NPR looked at identified 50 people causing a serious issue. If these people were to be identified by their insurance provider they could be denied coverage due to a preexisting condition which they might not even have yet. Unless large overhauls are done to make this database much more anonymous then there is no way that it should be made public.
ReplyDeleteThe only thing that could be construed in the NPR article as a mention of the social implications is that people would suffer from genetic discrimination, which I would find impacts health care reimbursement the most. Although if this information can be seen by anyone then there are other implications of genetic discrimination which could come into play. People could be denied jobs because their genome shows they will not be best in this field but they have worked very hard in this field and qualify in every way. This could also fall into marriage and family life as well. Men and women might not get married or decide to have children if one parent finds the other has a genetic variation which would cause an illness or a learning disability in their children. It seems as though even if the people do not want their information released that it still is. There are a few places which are honest and inform their subjects their information will be publicly available but most do not. This creates an even bigger issue.
I hope that the Supreme Court will rule against Myriad Genetics, as they should make their database public. I think their database should be public because it contributes to the greater good of science. By making their database public, it allows people who cannot afford their services access their information. I honestly don't know what made Myriad think they could patent genes, as they did not create them. I do not believe anyone or anything, such as a company like Myriad, should be able to patent biological content.
ReplyDeleteThe article mentioned the issue of privacy. I think it's unbelievable that people can be traced based on their genetic content. Even though the risk of privacy violation is low, it is still exists and that worries me. The risk of a breach in privacy makes me much less likely to get genetic testing myself. I feel that no is advocating for the consumer's right for ownership of their own genomic data. It's impossible to advocate on the individual level against a multi-million dollar company like Myriad. I feel that consumers who give Myriad Genetic their own genomic information should be able to decide to deny its public release. I believe that we are all the owners of out own genetic material, not companies like Myriad that hold exclusive patents to genes for the purpose of monetary gain. I believe that people who donate their genomic information should be able to deny the release of their information, even it its de-identified. As we have clearly seen, de-identifying this information hasn't worked as people have been able to be traced.
I hope that the Supreme Court would decide on removing the patent on the genes because I truly believe that it is a product of nature and not "human innovation". The database should be made public because sharing of the information to many different health professionals and scientists can increase the possibility of better innovation. Like the article said, "Today, doctors and researchers are scanning all of a patient’s genes and the old system is crumbling. No one can know enough to interpret the results without a public database" and because of that Myriad's system needs to be public. They also said that there is no way for one single laboratory to do everything that should be done with the genes.
ReplyDeleteThe article mentioned that the social implications from the patient's perspectives was not being able to have second opinions and to be forced into the "Myriad knows best" kind of deal. I think that it is not fair for the patient's because they are making a big decision in their lives (removing or not removing their breasts or ovaries) and they are not too confident if the information is correct because it is only coming from one source.
The consumer of Myriad Genetic should be able to refuse for public release of their genomic data even if it is de-identified because it is their own information and they should have control over it. And from the NPR article, it explains how the anonymity of the DNA may not be that anonymous as it seems so that is even another reason why consumers would not want their information to be in danger of being identified.
I hope the Supreme Court will decide Myriad Genetics cannot hold a patent on genes and the tests given for them. Having only one company test for genes it holds patents over leaves no space for competition. Prices for tests can be as high or low as Myriad makes it. People should have their choice of companies when deciding on genetic testing. The datatbase should not be made 'public,' outside of genetic companies and clinical studies. Since it is possible to identify a person using genetic markers and mapping, confidentiality cannot be promised anymore. Companies should be upfront about it and people would be more willing to allow their results to be used in studies, even if their DNA sequence can be traced back to them and insurance companies can use the results against them. Some patient's who got genetic testing done at places other than Myriad have gotten bad results, leading to mastectomies and other unnecessary treatments. The Association for Molecular Pathology is advocating for the consumer's right for ownership of their genomic data. The consumer of Myriad Genetic should be able to refuse public release of their genomic data, even if it is 'de-identified.' Unfortunately, people can be identified through genomic data and social network resources.
ReplyDeleteI personally hope that the Supreme Court decides that Myriad genetics does not have the right to patent gene mutations. Patents are about personal creations, and motivation for research and competition; however, patenting what already exists in nature seems to contradict the entire point of the patenting system. Furthermore, as many others have mentioned, patenting these genes and not allowing other researchers to analyze the date is in fact stymieing breast cancer research rather than expanding it. The article doesn't really discuss the implications of sharing all this information as viewed by patients, but the files on the mutations do not seem to possess identifiable information. With that being said I think this information should be shared just as other research information is shared, like state cancer registries that require permission for use and proof of research. Because I look at this as a public health student and not a consumer, I'm afraid I'm a little biased in regards to the sharing and distribution of this information. Yet, state cancer registries do exist and cancer cases are very highly reported, which is why we have amassed so much data. I think anonymity is important in this information, but I'm not sure if a consumer will be able to refuse that his/her information be used in research (even if it does not include identifiable information) if the genetic test results become available at multiple labs rather than just Myriad genetics.
ReplyDeleteI looked online for some more information as to how the Supreme Court is reacting to the two sides of the argument, and it seems that at least a few of the judges (and from different ends of the political spectrum), Justice Scalia and Justice Sotomayor, are agreeing with the concept that patenting what is already found in one's body or in nature seems like a bit of an absurd concept. (The article is on the Business Insider, found here: http://www.businessinsider.com/supreme-court-myriad-case-2013-4).
This issue is very interesting. As an outsider looking into the medical world, I feel like research is something that should be totally communal. Everyone is doing research, and everyone should be helping everyone. What is the goal? One of them is to find the cures for major diseases. While the whole 'communal' idea is true, it is also a risk. Myriad was experiencing the problem that the research they were posting was being used in a different way that they had intended. The risk of sharing research is that people can take certain things out of context. Just like the article mentioned, people can look at the genetic mutation found in one gene, and they may decide to make life changing medical decisions that are not necessary. It's a risk. On the flip side, there is also risk that if Myriad does not share their research, then it seems like a secret. They expect people to trust them. How can they find a balance between providing helpful information to those doing research, while avoiding the problem of possible misunderstandings? I think the bottom line is the the Supreme court should not let Myriad hold patents of genes and tests given. If Myriad is worried about the risks this this will cause, they should create a team (within their company) to focus on this issue. They should be required to share their research. Obviously they will not have control over how others interpret it, however maybe they can change the way they present their results. Instead of simply sharing results of genetic mutations, they can provide information about possible medical diagnoses, possible questions to consider, etc.
ReplyDeleteI hope the Supreme Court will decide on not allowing these gene patents.
ReplyDeleteI do not think that databases should be public, but I think that information in these databases should be more accessible to those who are doing research to help this cause. Policies can be made so that ways of classifying genetic risks differently by different researchers are not disclosed to consumers and thereby confusing them. Myriad could make a deal with other researchers that information and classifications made by outside researchers must be discussed with them so that they can come up with a universal classification system. Making access to databases does make raise a lot of ethical concerns. From the patient’s perspective, social implications could include genetic discrimination if the genetic information got into the hands of a potential employer. If the use of the information obtained in databases is not carefully controlled, consumers will be obtaining the same information but with different classifications that could be potentially confusing, and therefore cause more anxiety about already stressful situations. I think that genetics is a very controversial topic amongst the general population because very few people understand it. Because of a lack of understanding of genetic test results amongst the general population, impulsive decisions about these results could be made that can negatively affect patients in the long run. For example, just because someone has a gene making them genetically predisposed to breast cancer, this does not mean that they automatically will get breast cancer. But if an employer does not understand what these results actually mean, he could make the decision not to hire that individual because of their genetic predisposition. This type of genetic discrimination is not fair especially if the individual does not ever end up developing breast cancer. I think that although the information provided in these databases does need to be more accessible to more researchers, there needs to be a way of limiting who can access it, and restricting public access to it. By providing more restrictions to accessing privately obtained genetic information, the NIH is advocating for the consumer’s right for ownership of their genomic data. Researchers such as Jim Evans are in support of this as well.
Although I cannot speculate whether the Supreme Court will rule for or against Myriad genetics, I can only hope that it rules against them so that they cannot “patent” genes that they “discover”. The reason why I would like the Supreme Court to rule against Myriad is because I believe that they should not be allowed to patent things that occur in nature. I am aware that Myriad has made a great investment in studying genes and their mutations but I still don’t think they should profit off of their findings especially if it can potentially be to the detriment of the society. On whether Myriad should make its database public, I believe that they should be forced to make their database public since it can be very helpful for clinicians and genetic counselors to help their patients understand what their genetic mutations mean. Although I think that Myriad should make their database public I believe that they should only grant access to clinicians and researchers that may need the information just make sure that the confidentiality of the patients in the database is kept.
ReplyDeleteI hope that the Supreme court would remove the patent on the genes by Myriad Genetics and for them make their database public. I think it's very important for them to make their database public because this information is definitely very useful and important to researchers and other health professionals who are trying to discover more about breast cancer and other information that can really help people. Myriad's database needs to be public in order for more innovation to be discovered. Myriad has made their discovery, but because they aren't sharing their database with others, they aren't allowing others to (help) make new discoveries about breast cancer, yet they themselves aren't discovering anything new either. Social implications that were mentioned in the article include the uncertainty that a patient has from Myriad's recommendation following their genetic test. People who tested positive genes were therefore left with the recommendation of removing their breasts or ovaries. This creates a social implication because removing the breasts or ovaries from a woman is a very important decision and there is uncertainty in this because Myriad is the only company that tests for the gene. How can you be so sure that you do have the gene if you are only testing positive for it from one source? People don't want to believe it and would always want another source to confirm this, because Myriad patented the gene, only they can test for it, and no one else. And I think a consumer should have the right to refuse public release of their own genomic data even if it de-identified them because this is the consumer's own information and they should definitely have to right to control this. It is their own information and only they should be able to allow whoever they want to see it. The NPR article makes a great point about how there should be a balance between genetic information being open to the public and protecting a person's privacy. I think if the Supreme COurt can find that balance, then so much more discovery can be made in the future.
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ReplyDeleteI hope the Supreme Court would not allow Myriad to patent gene mutations and tools designed to look for them. I’m sure like most of my classmates would agree with my opinion. Before reading the article by NPR I thought to myself about how none of the data have names of patients or other identifiers, so confidentiality is not an issue. However, after reading the article by NPR I realized how easy it was to get information on people now. Everything is documented and once it’s on the Internet it’s hard to get rid of that trace. So I don’t think that the database should be made public out of the respect of patients. Unless it was guaranteed that this information would not be able to be traced back to a specific person then I’d be more confident in allowing that this database would be a good and trustworthy source. This brings us to the subject of social implication, which includes vulnerability to genetic discrimination. I personally don’t have any type of social media pages of myself, it’s not that I have something to hide I just think it’s a little creepy at times that people can stalk you and know information about you that you may not want them too. I don’t want to get enwrapped in other people’s life and problems and would rather deal with my own. With those type of pages there isn’t much privacy and everything is left for other to read and know. This may be enjoyable for others but for me personally I’d rather just skip out. People such as geneticist Jim Evans and people like him who have a concern for privacy of genetic data are advocating for the consumer's right of their genomic data. I believe that the consumer of Myriad Genetic should be able refuse for public release of their genomic data. Just like being able to release information to the public I believe that these consumer should have the right to consent and dictate what researchers do with their information.
ReplyDeleteObviously, I do not think it is right that a company should hold a patent to research that could potentially change the lives of millions of sick individuals. In my opinion the supreme court should definitely withhold the ability to put a patent on naturally occurring things. However, on the other hand, I do understand that Myriad Genetics DID fund the research that is now being presented so, of course, in some way they should be rewarded as such. It is very hard for a business to thrive if they do everything non-profit or altruistically- that is not the way this economy works. I think the only way around this is if the research results are shared- but with requirements. Not just anyone can access this info. Much like many publications found in PubMed or JSTOR, you have to pay a fee to see the works. Of course, we are talking about sharing information on a different scale, but nevertheless, I do believe Myriad has the right to make a profit on their own findings. So no- I do not think that companies should have the right to hold patents- I think scientific, specifically medical information, is information that affects us all. Unlike a cosmic discovery or a geographic study, medicine and genetics becomes much more personal because it puts us all on an even playing field. By no means should research that could help everyone be withheld for financial reasons. On the contrary, I think it should be available, but for a fee.
ReplyDeleteAccording to the article on Lexology, the supreme court so far is leaning more towards denying Myriad its patents on genetic sequences found in nature related to the human bodyhttp://www.lexology.com/library/detail.aspx?g=a6f3dbeb-9c7a-4d2b-860f-bff63f974d46 .
I hope that the supreme court decides to make the genetic database help by Myriad Genetics and all other similar companies open to the public. However, the line between how much information a company has to release based on their role in the genetics community is a tricky subject. Myriad genetics holds a a significant amount of genetic information that extends beyond their role in breast cancer genetics, which is all information that should be available to the public. But then again, smaller companies who focus on a very specific section of genetic research might need their discoveries to be witheld in order to keep their business running and to continue further research. In the end, information should be public, so most companies should be required to have their information publicly available. Seeing as how the article states all consumer information is witheld, consumer confidentiality does not seem to be an issue. However, consumer rights in other aspects of this issue do not seem to be protected and the supreme court should create a method to ensure consumers are protected.
ReplyDeleteWhen reading “Anonymity in Genetic Can Be Fleeting,” one quote that struck me as being very interesting was the ability to not only identify you by looking at your DNA, but to identify people related to you. “We could actually identify all the other people in the family, basically by looking at public websites, public records of these people, and Facebook and other websites,” said Erlich of Whitehead institute for biomedical research. This could create a massive amount of problems among family member who may have not been directly involved in the process. The medical geneticist said it best, “Privacy has been continually eroded in the digital universe in which we live.” The world in which we live in is so much dictated by the digital world that it is hard to keep anything private. I agree when he said that we need policies for how this DNA data is handled, and who it is being shared too. If the information gets in the hands of the wrong people they may try to exploit or sell this information. The fear is that there will be genetic discrimination from jobs or even insurance companies.
ReplyDeleteIn the second article I do hope that the Supreme Court decides to make Myriad share their databases, but only if they adhere to certain conditions. I don’t think that all of the public should have access to the information. If it only goes to certain companies or organizations that use this information for research purposes only I think it would be a good idea. If this database were accessible to researches they would be able to make future connections betweens genes and certain diseases. I also think that a big part of Myriad not wanting to give away their database is due to economic reasons. The Myriad company might lose a lot of money if this information were to go public. If the right balance were found between who has access to this information and who doesn’t I think that sharing their database would be a smart decision.
First off, consumers should get some sort of warning that their medical history may be released for profit, before patients give consent. I feel like this whole situation has cast an awful shadow over the entire purpose of this research, which is to benefit the public, the patients, those in need...NOT to make a profit, create competition, etc. I'm definitely against having Myriad patent individual mutations...these databases should be available to all researchers...the whole point of this is to save lives NOT run a business. Myriad has identified genes, they have not created anything to require a patent. By keeping important influential data secret, Myriad is not allowing research to progress, and is ultimately harming the population.
ReplyDeleteWhile I read this article and think about the topic of purchasing one's genetic information and all that entails, one thought keeps resonating in my head..."this is people's identity we are talking about!." Shouldn't they have a right to maintain some privacy in certain aspects of their lives? Concerning the Supreme Court's ruling on whether or not Myriad needs to share their databases, I believe that as long as "that cat is out of the bag," and someone has access to this information, by the nature of it, everyone should have a right and ability to have equal access to it. This being said there needs to be strict regulations, that NEED to be adhered to and supervised constantly.
ReplyDeleteI am a very strong advocate for one having the right to their privacy, however, as long as this information remains confidential and is regulated in order to ensure it does not fall into the wrong hands, allowing the use of this genetic information is necessary to advance sciane and medicine and allow people to live longer and healthier lives.
I hope that the Supreme Court will rule that Myriad Genetics will have to share it's database with other companies and to the public. I agree with other student comments that Myriad Genetics is being selfish and only trying to gain a profit from having a patent on the genes. This company has very useful information on which DNA changes increase one's risk of cancer and by how much. The information that this company has in my opinion will be able to save many lives if it is able to be shared and made public to other companies.
ReplyDeleteThe first article did not really go into the topic on patient perspectives. I think that consumers all deserve the right to know whether or not their information is going to be used publicly. A disclaimer should be given to all the consumers and they should be given the autonomy and informed consent to decide whether or not they agree with their information being public. Even though their identification will be covered, it is still important for them to be aware that their genetic information is being shared. I think that the Supreme Court should enforce harsher regulations to protect consumers and their privacy rights. One recommendation could be to extend HIPPA regulations to make sure that there are no loopholes. I found is shocking how easy it is to trace one's DNA back to who is belongs too after reading the NPR link. And I strongly agree with the statement that was made that people are trusting if given all the information and risks upfront. I think that consumers need to act more as advocates for themselves because most of these genetic companies are only after making a profit.
I do not think the database should be made public. Making the genetic information public poses a privacy risk for the individuals who gave their DNA to researchers. While the database shouldn’t be in a public domain, I do feel that there should be a database of this information available to a large group of genetic researchers. It is unfair for Myriad Genetics to have a monopoly on all of the genetic mutation information. The database could be password protected and limited to use by only specific genetic research companies. In this way, access to genetic information will allow for improvements in research and a greater understanding of how gene variations play a role in cancer risk. However, like the article mentioned, it is important to develop a set of guidelines for protecting the rights of the individuals whose DNA is included on the database, and those who disregard these guidelines should pay a violation fee.
ReplyDeleteThere are numerous social implications for patients. For those patients who have given their DNA for research, their privacy is very threatened, since genetic information may not be able to be completely de-identified. I found it very surprising that the researcher in the second article was able to identify subjects and their relatives online by entering a small segment of their genetic code into the internet. For patients seeking treatment or genetic counseling, the implications of Myriad Genetics’ monopoly on research include the lack of a second opinion. Patients are forced to put their trust in Myriad Genetics, as if the company knows exactly what’s best. In my opinion, it would be much better to allow for the generation of new ideas and technologies by other geneticists by making Myriad Genetics’ information available to outside researchers. However, all patients of Myriad should be allowed the opportunity to specify whether they want their genomic data to be made available to others for continued research. As of now, the only entity responsible for protecting the rights of the consumers giving their DNA for research is Myriad Genetics, which currently has unlimited use of the genomic data. Overall, I hope that the Supreme Court decides to limit or deny the right to patent genes.
Alexandra Kramer
ReplyDeleteI agree with what a number of my classmates have commented on in terms of privacy and the intention of this research. It seems weird that for a little bit of money, our information could be sent out to whomever will pay for it. On one hand, it is true that as long as it is anonymous it shouldn't matter, however there comes a certain point where my personal information should be kept to myself, even if I voluntarily sought it out. I have a right to want to know and find out about my genes without having to worry about my information being sold to others.
Another issue that came to mind, though, was the fact that this one group, Myriad, has a hold over all breast and ovarian cancer genetic testing. I remember in the video we watched in class how when asked about the price of getting this genetic test done, the man being interviewed gave no indication that he cared how expensive the test was, and how inaccessible it made it to the majority of the population. All these genetic tests should be about health and helping people, not making money. Of course money factors into it and I'm not saying people should never think about it, but the large impact it has on many things can be worrisome. Making it so Myriad has less of a monopoly on this genetic testing could prove to be beneficial to the general public.
The issue of myriad genetics and their ownership of gene patents has surfaced frequently in class discussions. I think the fact that Myriad can own the patent on a gene is unlawful and completely irrelevant to the direction of science. Instead of trying to focus on patient genetics they want to focus on maximizing profit. I think it is best said in the New York Times article about the supreme court argument "Myriad deserved credit for its work, but not a patent. 'What exactly did Myriad invent? Mr. Hansen asked. The answer is nothing.'" I think the supreme court is leaning hopefully against Myriad in this re-discussion of the issue because I think by disallowing them to maintain the patent and rights to distribute information publicly it can open many more avenues of research and development only previously limited to their sole corporation. I think the issue of privacy is a very sensitive one to deal with because the research does claims so in the name of innovation and further development. With this issue both sides come at a cost either for developing new genetic research or with gaining more support from those searching to keep their genetic information private. We are putting way to much trust into one company to assure a large amount of genetic information. They basically have a monopoly over this one set of breast cancer related genes and a massive database of other genetic info. By ridding myriad of the patent it allows for fair distribution of specific genes that may be associated with diseases. It's a difficult issue to have a definitive solution for but I think that if supreme court goes against myriad in court the battle will be headed in the right direction.
ReplyDeleteI hope that the Supreme Court rules in favor of making the Myriad database public. The database should be available to the public so that researchers, doctors, and scientists can study the variations in peoples’ DNA and how that relates to disease. The more people that are helping to retrieve this knowledge, the more likely we are to find treatments and develop prevention strategies for diseases we would have otherwise not been able to treat. The social implications of this from a patient perspective is that the test leaves it up to the consumer to about how he or she wants to deal with the results of the test. For example, if a woman test positive for breast cancer she may or may not decide to remove her breasts. It would make the consumer feel more comfortable if more than one company offered the test. I think most consumers would agree that they would like their genomic information to remain anonymous. Laws will need to be put into place to protect consumers so that their de-indentified information does not end up in the wrong hands or on the internet for everyone to see.
ReplyDeleteI hope that the Court decides that Myriad shares its database. I have this opinion based on the saying, "two heads are better than one." I think that Myriad having all the information regarding the breast cancer genes is hindering research and therefore preventing healthcare to improve. If other companies were able to have access to their database, more researchers could help to explain more mutations and help find cures. However, ultimately, I think that when it comes to gene ownership, I think the person who owns the gene should have a bigger say in releasing their history than a company does. Therefore, I agree with NIH's motive to restrict accessing genetic information. Patients should be able to decide whether their information gets released, even if it is released anonymously. After patient approval is obtained, I think researchers from beyond just Myriad should be able to collaborate and study the genes. That way, more uncertainties about mutations in DNA and related risks can be better explained.
ReplyDeleteIn my opinion, I believe that Myriad should allow their database to be available to the public. Through withholding the information they have, they are preventing future research and analysis of data that could benefit society and the field of genetics. The article does not specifically address the implications of sharing the information as viewed by patients. However, the information provided pertaining to the mutations does not demonstrate any direct information making the patient identifiable. Therefore, I do not believe that the release of this information would harm the patient or breech privacy. The information obtained through Myriad testing could save the lives of future patients and so long as there is a patent in place, research is being inhibited. Myriad does have the right to make a profit from the testing they are providing but not only are they profiting greatly but they are preventing patients from obtaining testing that is affordable and reliable. A patent on such tests prohibits a patient from receiving a second opinion and forces them to rely on the results and expertise of one company. The patents that this company holds have caused the company to be very profitable but at what cost? The services provided might in fact be harming the well being of the customers they serve. Refraining from sharing the data they possess may protect the privacy of the patients but will also cause more harm to current and future patients then overall good.
ReplyDeleteHaving one's genetic information freely flowing from company to company is pretty unsettling. Knowing that anyone can obtain this information makes it worse. The dilemma is this: allow many companies to have access to the public database vs the risk of maintaining people's privacy.
ReplyDeleteOn the one hand, I do not believe that Myriad is trying to patent its genes based on an issue of privacy, but yet, on an issue of profitability. This is truly upsetting because the cause driving this project should not be to stuff more money into the pockets of the head honchos, but instead, should be to help the woman suffering from breast cancer, as well as the hundreds of thousands of others that find themselves in her situation too. It tarnishes the the work being done if the company becomes selfish, because as mentioned in one of the articles, the amount of genetic information needed to make headway in a project like this is so vast due to the many variants that can exist. Having more minds working and researching these genes would prove more beneficial in the long-run.
On the other hand, if Myriad were not to patent its genes, then not only would multiple companies be allowed to obtain this information, but this information could easily end up in the wrong hands as well. This is the risk we face in striving to improve the health of people. Because this area of research is so new, genetic data already exists in the public domain, making those people vulnerable to losing their privacy.
Overall, given the present moment lacking regulation of privacy of genetic information, I think the best way to go about this is to have companies restrain the information from reaching the public domain, since the information discovered should not be used for clinical decisions in the first place. Therefore, I find no reason why it should be made publicly available. However, as we know, there is always a chance the database could be breeched or leaked, and unfortunately, the only solution seems to explicitly warn people of the risks of this happening. If the people agree to still participate, then at least it was an autonomous decision.
I think the practice of patenting genes should be outlawed. From my perspective, Myriad's claim to have patents on certain gene mutations is ridiculous. This knowledge should be made public and available to access, so that researchers and clinicians can use it to develop new beneficial strategies towards preventing disease. Their database should be made public so that research and new prevention methods can flourish. The database should be made public and every precaution should be taken as to eliminate identifiers attached to patient information. As long as the patient data remains anonymous, this database would become a great asset without any controversy surrounding patient privacy. I hope the Supreme Court rules Myriad's business practices as unlawful so that this important data is shared to forward this area of medicine.
ReplyDeleteFrom learning about Myriad genetics and their gene patents this semester, I have explored the situation and stated in previous blog posts that I support their right to hold these patents on BRCA1 and BRCA2 genes. They ensure that people being tested for these genetic mutations are receiving reliable information about their possible medical conditions. They also ensure the privacy of patients' genetic information, which is a major issue regarding all genetic testing companies. However, I do believe that Myriad should publish data on their research for other companies to use as a resource. They already own the patent to the genes, so their financial interests are secure. And if they were to publish this data anonymously, Dr. Nussbaum and other genetic researchers may advance the progress of research regarding breast cancer. Protecting privacy is certainly important, but withholding valuable information only slows the potential for world-wide advancement. Researchers working on the Human Genome project would regularly publish their findings to the public, making it possible for other researchers to progress where one left off. It was this type of mentality that initial breakthroughs in the human genome were possible. Myriad claims that they are not certain of many of the mutations observed, and they fear that other companies will interpret them to indicate something inaccurate. However, other companies may be able to uncover some of the mysteries that Myriad encounters if they had access to their genetic data. Because of patent restrictions, public databases for other research companies to use are incomplete or scarce. This ultimately slows the advancement of medical possibilities for the future. We have been seeing an increase of pro-genetic legislation being put fourth in the pursuit of public health. I believe that Myriad safely sharing its data with the world is a step forward in cancer research. Something that holds great clinical value in all societies.
ReplyDeleteMyriad does hold the rights to sell clients information without notification as long as that clause was agreed upon in a contract that every client likely would have had to sign. Morally right or not, if Myriad Genetics put forth in a contractual agreement that they would be able to sell genetic information then by law they have that right. That is why it is so important in this day and age to carefully read and analyze all legal documents with which you are presented, especially medically related. I would be in favor of the Supreme Court deciding that Myriad must share their genetic database. I believe that the information should be ‘public’ but only in the sense that other research groups and firms could use it for justifiable and legal research. As far as social implications go, the stigmas and stereotypes that could be associated with genetic information could find their way in to employment, financial and personal issues so it is a very sensitive type of information. If individuals are prepared to take the risks of handing over their genetic information to a company they must make an informed decision based on the conditions given to them. People must be responsible in understanding what a company can do with their information once the company has access to it, whether this means gaining legal aid in understanding a contract, the consumer must be aware before they obligate themselves.
ReplyDeleteI believe that Myriad should not have the right to release the genetic information of their consumers without the consumer's consent. I think that one of Myriad's top priorities should be to protect their customer's privacy if they do not want their information spread. When talking about the right to patent genes, I believe there could be two affects. On the one hand I believe that Myriad should have the right to patent genes because like any other product this will encourage competition that will incite progress in the research and will allow us to make vast advancements. Like any other patent these patents on genes will expire and other companies will be allowed to conduct further research on these genes. On the other hand I can understand the argument against patents because a part of me believes that we should maximize the amount of new information we can learn about an important gene once we find that it can be connected to certain diseases. With this side of the argument, withholding patient information would also potentially slow the advancements we make.
ReplyDeleteI hope that the Supreme Court will decide against Myriad and no longer allow companies to patent genes. While I understand that patents are an incentive to companies to invest a lot of money into research, I believe that it is wrong for a company to have a monopoly over genetic tests. The Human Genome Project proved that great advances can be made in science and genetics through international cooperation and a drive for knowledge and not by a company looking to make money. For this reason, I don't think that patents are necessary as an incentive in many fields of science, because scientists will pursue that knowledge anyway. With regards to the databases, I think that patients should have the choice to not make their data public, but should be encouraged to do so. The public data could be very useful to other companies and scientists. In order to make more advances and improvements in genetics, the database should be public.
ReplyDeleteWhile the opinions and rights of the consumers and patients were not talked about a lot, one of the articles did mention the possibility of tracking down people based on their genetic profile. This is a scary thought, but I don't think it should dissuade patients from contributing their DNA to the database. Patients may be concerned about certain diseases or conditions being made public which could impact their employment, social life, etc. I think that in order to avoid any negative effects of the public data, the database should be strictly regulated. So while it is "public" in the sense that not only Myriad has access, it won't be public to every single person with a computer. Since this is personal information, I believe that people and companies should have to be granted access to the database and agree not to spread the data around.
There needs to be a balance, so that peoples' privacy is protected, but as many minds as possible also have access to the database for research.
I strongly believe that Myriad, and other genetic companies should not be able to patent genes. I agree that patents are an incentive for companies to invest a lot of money into research, and that innovation stems from incentive; however, in the case of patenting genetic tests, I think it would be better for companies to make their information public. The whole point of genetic testing is to gain new information about genes, and to help individuals learn more about their risks for certain diseases. The article mentioned that people are unable to get a second opinion on the BRAC1/2 genes because there is no one else in the genetic market that can offer the test. This is silly because when it comes to medical issues, many people seek out second, and third opinions.
ReplyDeleteThe Myriad databases should be encouraged to be made public, but I don't think that they should be forced to be made public. The databases are full of years of information that Myriad has done, and why should they make it public to people who haven't done the same amount of work, or research? I think that it would be great for them to publish the data, but it should not be a requirement.
In regards to people being tracked down through their "anonymous" DNA contributions, I think that the public should be better informed of the risks of giving out DNA samples. Obviously the public feels safe when contributing their DNA; however, this sense of security is false. I think that there needs to be more guidance about the risks associated with providing DNA samples.
“What about the first person who found a liver?” asked Justice Elena Kagan. Justin Elena Kagan’s quote is from an article found in the LA Times about the Supreme Court and it’s decision on patents on human genes. According to this article, I can see that the Supreme Court is very skeptical on the idea that genes should be patented and hope that they agree to let Myriad share their database.
ReplyDeleteThe second article on npr did mention the social implication from the patient’s perspective since there can be privacy issues involved where it is possible to identify a person based on their DNA sample. My thoughts are that it should be the patient’s decision on whether or not he or she would like his or her DNA information shared or not. Additionally, since it is possible that research and discovery can occur from them sharing their information, I feel that it is important to explain to the consumers about the overall benefits of sharing their information, and also in making sure that there privacy is protected in the best way possible.
Reference: http://www.latimes.com/news/politics/la-pn-supreme-court-patents-human-genes-20130415,0,2991661.story
The sharing of information here needs to be largely up to the consumer. Before genetic testing is done, it is important that we make sure those being tested understand what it means to have the information become public. I think consumer education in this case will be very beneficial. Myriad however, should not be able to patent genes. The scientific community is a collaborative forum and the developments/treatments we have today are largely because of a multitude of research done by many scientists. The treatment may have been created by one specific scientist but it surely incorporates/builds upon other people's research.
ReplyDeleteI think that consumers do have the right to own their genetic information; if they dont then who does this right belong to? Also, if myriad has a patent how will anyone ever be able to gather a second opinion? What if myriad is not covered by their insurance plan? Science needs to operate as an open architecture but one that keeps its consumers in this case very protected. Therefore, myriad should come up with serious protective measures that allow for data sharing for the benefit of science but keep the consumer well protected.
I am sure that that Supreme Court, along with most people, is skeptical about having patented genes. I hope they will decide that this patent cannot exist. That being said, I do not think by any means that Myriad’s database should be made public. I think that genetic information needs to be closely monitored and should only be available to genetic researchers, to protect the identity of the patient. Like the NPR clip states, I agree that there needs to be serious consequences for people who break these privacy policies because genetic discrimination can occur too easily. I do not agree with the public record approach that states that people will be more trusting of a company if there is transparency, and do not think that the general public should have access to this information. I also think that it is wrong that Myriad selectively grants access to their database based on profit and potential customers.
ReplyDeleteI do also see the benefits of a lab focusing on a few genes and specializing in that area, like Myriad did for the BRAC genes. Our genome is extremely complex and it is too much to ask for every lab to be completely up to date on thousands of possible variations. I think the solution is for Myriad to lose the patent and for their research to be available to only a very select group of researchers who need it. This will keep patient privacy a priority and also allow for further scientific research to occur.
I don’t think genes should be patented because it hinders the possible progress that other companies and test centers may have. Myriad claims the testing rights for the BRCA genes, but what if another company who ran tests could potentially lose a discovery? It seems like the techniques used by all testing centers and companies used falls under standard procedures. So why is it that they feel the need to turn human genes into property? That’s like putting a price on someone’s life. Rare genes found could people's identities at risk and lead to genetic discrimination. Patents only result in competition, and competition would cause monopolies as the first article stated.
ReplyDeleteEthically I don’t believe it is right to deny the right to disclose specific information that may benefit a company. After all, the genes should be considered the property of the individual, because without the individual they would not exist.
I think for the researcher, claiming genes, as property may be beneficial in the sense that it could push them, with monetary compensation, to further their progress in discovering variations in the genes. However, I do think this would again cause researchers to not want to disclose information fearing it may get into the wrong hands and they may lose their payment opportunity. I think this would be detrimental to the public, because as I said, it would end up putting a value on people. I think the Supreme Court should be unsure as to whether or not genes should be patented, just as the public should be. People should be fully aware of their risks, and making Myriad's database public will only open more doors for genetic discrimination to become more prominent. Myriad should not be the only company to have exclusive access to patented genes, because as stated in the first article, it is almost impossible for one lab to keep track of so many variants. I think if Myriad shared information with other companies working on other gene variants, they can benefit more than keeping their discoveries a secret and putting the public at risk.
I hope the Supreme Court will decide that Myriad Genetics does not have the right to keep the information about the BRCA genes to themselves and that their patent is no longer valid. In order to truly promote the study of genes and make advances in the field more scientists should have access to the information and be able to research the genes. I do not think the database should be make completely public, however. I think there should be an application system of some sort for labs to apply and it can be determined if they are eligible to access the information or not. This way the genes will be handled properly and there will hopefully be no misuse of the information. With Myriad having control over the genetic information it does not allow patients to have the second opinions about how they should approach their medical treatments. Their genetic testing on breast and ovarian cancer can only come from one source. This is not ideal when treating possible cancer patients. There is also the problem of keeping patients anonymous because it has been discovered that patients can actually be traced to by their genetic information. This is another reason why the database should not be completely public.
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ReplyDeleteI have commented several times throughout the semester on my opinions regarding Myriad genetics and on the topic of patenting genes. Therefore, I would like to focus on the debate centering around information sharing that is discussed in these articles. I was very intrigued by the fact that information sharing in a scientific setting has become so controversial and a “hot button” issue for Myriad. Interestingly, Myriad posted its data on a site for researchers until 2004, but claims that it discontinued this privileged because, “company became aware of problems with the way its data were being used. For example, [Mr. Capone] said, the person running the database part time updated it only every couple of months. And the database included risk estimates submitted by laboratories all over the world, not just by Myriad.” Mr. Capone then continued discussing the issues with data sharing stating, ““We might classify a mutation one way, and someone else might call it something different,” Mr. Capone said. That is fine if the data were being used as intended — for research purposes only. But instead, they were being used to tell patients their cancer risk and to make major medical decisions.”
While I can understand the hesitation and the risks inherently associated with data sharing among the population, the information is a valuable resource that should not be limited to certain subsections of the population. Scientific researchers and clinicians worldwide could benefit from such information and the data could be applied to countless studies across many fields. Knowledge has great power, and unfortunately, sometimes this power is abused or used in the wrong way.
Efforts to reclaim this data, such as the grass-roots project, Sharing Clinical Reports, which are asking cancer clinics and doctors to provide them with all the Myriad data they have, are an important step to reclaiming this data. However, as Dr. Robert L. Nussbaum, the head of such an initiative states, “estimates that with about 1,000 mutations collected so far, he has only about 1.5 percent of what Myriad has.” This frustrating statistic shows that without the diagnostic technologies that Myriad monopolizes, a comparable information database cannot be recreated.
I hoped that the supreme court would decide against Myriad, but it appears as though they have agreed with Myriad for the most part and defended their patents. I think this decision comes at the cost of public health because the cost of treatment will remain the same or probably increase. It also keeps the data in the hands of Myriad, and though they claim that there are no names attached to the genetic data, it can still be traced back to the person regardless, so it is not safe for the consumer in any way.Therefore, though researchers may benefit from databases being public, consumer privacy will be the price to pay, and I feel that people should not let that happen because companies will figure out a way to use it for their own benefit. Clearly no one is advocating for consumer rights in this court case, not the supreme court, myriad nor researchers, but they are rather fighting who has the right to use all of this data.
ReplyDeleteAlong with many other people I feel that the Supreme Court should now allow Myriad to patent gene mutations and the methods they design to find the mutation. From a humanity perspective it is not right that Myriad own the genes of people especially such life changing mutations. However, I do understand that Myriad is a business and they created this industry to make money. I’m sure there is some other to device a business model that doesn’t rely on patenting specific genes. People should be made aware that such important information is patented and can be argued that DNA is not as personal as it was once thought to be. From a business standpoint it is advantageous to limit and control the use of these genes through patents, but I feel that for long term advancements in disease detection this genetic ownership needs to be made public.
ReplyDeleteI hope that the Supreme Court will rule against being able to patent people's genes. In my eyes I think that it is acceptable to patent a procedure that tests for a certain gene abnormality, but I do not see how it is possible for someone to have a patent on a gene. It does not make sense for a company like myriad to have a patent on a gene, they have created a monopoly on the market. My fear with a positive court ruling is that companies will begin to creat monopolies on genes and there will be no market competition. When it comes to making myriads database public to all geneticists I think that it is completely acceptable. The only stipulation that I could see to make it feasible is that the identity of the patients needs to stay confidential. Once confidentiality is ensured I do not think that it matters if qualified personnel use the database for research purposes. In addition to keeping the patients identity confidential they should have the ability to keep their information out of the database.
ReplyDeleteAs many other students have declared, I would hope that the Supreme Court rules against patenting genes, for the reason that ruling against gene patenting aligns more properly with the rights of individuals and with the traditions of scientific research. I do feel that Myriad should be able to patent the procedural techniques used to isolate and test for variants, but I feel that it would be more beneficial to all of us if they weren’t permitted to patent the genes themselves. This would allow for other researchers and medical professionals to study the gene variants and offer information that might not be gathered with only one company having access to the data. It would also be beneficial to our understanding of cancer and other possibly genetically-influenced drugs if this information could be shared. I agree with what was mentioned in the second article, in that I don’t necessarily think this database should be made completely public in order to protect the anonymity of patients. I think researchers should be granted access if they prove access is warranted. Additionally, I think patients should have the right to refuse allowing their genetic information to be made accessible, especially since it has been proven that it is possible to trace that back to their identity, per the NPR article.
ReplyDeleteThe article does briefly mention social implications of Myriad patenting the BRCA genes, in that it states that patients should be able to get a second opinion with regard to risk. I think this is important- if it were me, and I had been told I was greatly predisposed to get ovarian or breast cancer and that my best option was to get them removed, I would want to be absolutely positive that this is best way to deal. Patients with this issue have many things to consider before going about such an extreme procedure, and it would be more respectful to the patient if they were permitted to get reassurance of what their options are.
Along with many of my peers, I also hope that the Supreme Court decides to take away Myriad's ability to patent genes. I do not agree with the argument that these genes do not occure in nature and are man-made, thus they can be patented. I do not see how these genetic variations are considered man-made when they occur within the human and are passed down from parent to child. All that Myriad has done is identify this variation and figured out it's place in regards to cancer. The variation is already there and occurs in many humans. Without the charing of information, it is not possible for other labs to examine these genes and do their own research to determine what they mean. It does not allow other perspectives into the equation. It hinders the process of learning as much as we can about all the genes that Myriad takes claim to.
ReplyDeleteI agree with many of my classmates that the Supreme Court should lift Myriad's ability to patent genes. Allowing Myriad to refuse to share their discoveries and research goes against the purpose of the research altogether: to benefit people who have a genetic disease and to help prevent it from appearing in future generations. The only reason Myriad would want to keep their finding to themselves is because it would decrease profitability for their company. Other companies and researchers should have access to their findings so that the ultimate goal can be reached as soon as possible.
ReplyDeleteConcerning individual patients and their privacy, I believe that no information should be released without the knowledge and consent of the patient. I believe patients should be well informed of the possibilities before they participate, and they should be contacted if anything is published or released using their genetic makeup. After reading the Immortal Life of Henrietta Lacks, and learning about the HeLa cells, I believe everyone has a right to know who has access to their genes and what medical innovations come from them.
As many of the other students have said, I too hope that the Supreme Court removes this patent on the genes by Myriad Genetics, allowing them make their database public. This one company alone has patents on certain genes, and therefore pretty much controls the market. It is a smart strategy on Myriad’s part; however, no matter which way the patent decision goes, the company will still own the largest database that tells patients what various mutations mean. Letting go of a little control does not mean this entire corporation will fall, it will just give others a little opportunity as well. I agree with Lisa Moreira’s post in that “Myriad Genetics is being selfish and only trying to gain a profit from having a patent on the genes.” Doctors and researchers are doing all that they can, but no one can know enough to interpret the results without a public database. It shouldn’t even have to come to this point. I thought that the NPR, “Anonymity In Genetic Research Can Be Fleeting,” was very interesting. It said how people who volunteer for medical research usually expect to remain anonymous, but now researchers have shown that in some cases, they can trace research subjects' DNA back to them with ease. Furthermore, they say the risk of being identified from genetic information will only increase. Yaniv Elrich even states how they could "actually identify all the other people in the family, basically by looking at public websites, public records of these people, and Facebook and other websites.” This comes to me as no surprise; social media has really taken over all aspects of life. Like Liz Mathew said, “With all of our new technology, it wouldn't take too much effort to find out which information belongs to which individuals.” I think that there needs to be a balance between making genetic data available to researchers and protecting people's privacy. However, I also agree with Jillian Allen, in that I do not think it is ethical for the company to release histories for profit without notifying the patient and receiving their consent. I understand that the fear for volunteers to provide their DNA for research may be vulnerable to genetic discrimination. The Supreme Court is going to have to make a decision later on about this discrimination, especially with regards to insurance companies.
ReplyDelete• Myriad could perhaps release what each mutation sequence was and what risk followed, but they definitely should NOT be allowed to release larger portions of genetic makeup, as even without identification this data could be used to identify an individual and their family members - which would ultimately violate the HIPAA laws.
ReplyDelete• In order to fully protect the privacy of individuals involved in the research studies, it might be time to consider not allowing the publication of individual's genetic sequences, as eventually this may be able to be retraced to an individual and their family. Instead of publishing genetic data, it might be better to just report the detailed results and provide the scientist's contact information for further questions. Then, people who wished to see the data could first get the permission of the participants and a contract could be signed in regards to what the information was going to be used for and the guidelines for privacy protection that were going to be set.
• I hope that the supreme court will decide to create guidelines for patenting genes. I believe that genes should be able to be patented for at least a short period of time, in order to regain the money put towards the research and technology to make the advancements possible. This is similar to the pharmaceutical companies, who are able to patent new drugs used to cure diseases and other health ailments. Although I believe in the use of patents for both pharmaceutical companies and in genetics, I do not support the current system of patenting being used for genetics, which is really just no system at all. I believe that the rules for patenting genes needs to be strongly defined and limited, but also considered tentative - because the science behind genetics is rapidly growing and the rules behind patents may need to evolve with the evolution of the field.
• Based on the "Sharing Clinical Reports" project's description of the immensity of Myriad's database of mutations and consequential risk, I believe that Myriad must have gained more than the reported $500 million dollars put towards investment in the cause. If this is the case, I believe that this data should be made public, as long as the information that is being made public is strictly generalized and is not enough to trace the identification of an individual.
• If each mutation identified in the database is not generalized this may allow for the identification of the individuals carrying this mutation, which is clearly a violation of privacy. This privacy breech could lead to health-insurance discrimination, work-related discrimination, education-based discrimination, and so-on.
• In regards to privacy protection and consumer's right for ownership of their genomic data, Myriad is indirectly an advocate; by keeping all the information in the database private they are also protecting the consumer's privacy. Ultimately, I believe a resolution can be made that will be a happy medium between protection of consumer privacy and assurance of company profitability.
I hope that the Supreme Court will decide against being able to patent genes. Patenting is, essentially, making a product or an idea ones property. There is no substance in the argument that genes can be patented. The only way Myriad or other companies should be allowed to disclose their information is if they let their patients sign off on a contract that states they accept the disclosure for scientific purposes. Like my other peers, I do agree that patents will create incentives for more companies to spend. As I’ve stated in other blog assignments, such companies are looking for ways to make money, and this is their chance. This is a chance for them to compete into creating what essentially will become a monopoly. If companies did in fact, become successful in patenting genes, they should provide a system that educated the consumers about why their information would be disclosed and the benefits associated with the disclosure.
ReplyDeleteI am on the fence regarding this topic and really can't decide which side to choose to agree with. Personally, I do have this feeling and hope that the supreme court rules in favor of removing this patent on genes by Myriad Genetics. I believe that the price they have set to get tested for the mutations that cause breast cancer in women is very steep and unfair considering that there is literally no where else to go. This pretty much means that in terms of getting tested, Myriad has a monopoly. It's difficult to gauge, however, how much of this is fueled by greed on Myriad's side. On one hand, we can argue that there is no need for Myriad to charge such high prices, but do we honestly know what they are doing with all of that money? Are they truly making such a huge profit and keeping it for themselves? And even if they are, isn't that the point of a business? These are some questions that we may never have answers to seeing as though Myriad is not just a research unit, but is fueled by business as well. Myriad has a strong and persuasive argument explaining that the funds they receive from the testing is used to fuel and improve further research on genes. It seems like this may even be the case considering how large and advanced Myriad Genetics has gotten since the discovery and patenting of the BRCA1 and BRCA2 genes. To play devil's advocate, maybe Myriad really is using this money to make advancements to ultimately help people understand genes more clearly.
ReplyDeleteIn terms of using and releasing genetic information/data, I do think that without a consumers consent that is is unethical. Individuals should have a voice in their genetic information as I do believe that it is ultimately theirs, and not Myriad's. It is unfortunate that Myriad believes that the genetic information is technically theirs once it's in their hands, however. Even if the information is de-identified and stripped of any possible identifiers, I still believe that the genetic data they choose to release belongs to an individual somewhere out there. Without their consent, I believe it should at the minimum stay private between the individual and Myriad Genetics.
I hope that the Supreme Court will rule against Myriad. The film "In the Family" made a valid point on scientific discovery as one genetic scientist pointed out in the film. If a new variant is discovered, it is published for others in the community to use. Along those lines however, the information database they possess should not be made 'public' unless there is a confidentiality agreement to protect the people who have had a test done on them by Myriad. The reason for this confidentiality agreement is a safety net for those who may be affected by genetic tracing like the NPR article mentions. Genetic tracing endangers a lot of personal information people do not necessarily want out in public. This privacy issue was touched upon in the NPR article. However, even if it was de-identifiable, the consumer has no power since Myriad owns the rights to the information they get out of their consumers. The NPR article mentions how any genetic information is traceable, and thusly, consumer information could never really be de-identified.
ReplyDeleteI sincerely hope that the Supreme Court will rule that a company having sole and private access to a database of genes, variants, and interpretations is completely ridiculous. I can't imagine any reason a company would want to stifle and essentially prevent the well-being of others, other than to make a profit - which is exactly what Myriad is doing. They've monopolized information, which is something that should not be allowed. I think it's inspiring that Dr. Nussbaum is trying to recreate Myriad's database, but it will take him years, if not decades, to match the quantity of data he has obtained to that available at Myriad. This time is time wasted, as he and his colleagues could be working on more significant research. I don't think that we should be viewing information that will help save lives as a prize or a right - just because Myriad developed the technology or the capability first doesn't mean that everyone else must do the same and develop it on their own in order to help people. I understand, sympathize, and agree that Myriad should receive compensation for their work, but a better way to do that need to be found, because what's currently happening is only slowing progress for the sake of monetary gain.
ReplyDeleteTighter and better security must be put in place before making all genomic data public in order to protect the privacy of those who've shared their DNA. The article mentioned a worry concerning genetic discrimination, and I fear that that outcome is far too likely if this information is not well-protected. People should not be forced to turn down genetic testing that could improve their lives simply because they fear they'll be treated differently based on the results. As long as this genetic data is well-protected and cannot be de-identified, I see no harm in making it public - only gain.
I can definitely see both sides of the issue regarding whether or not Myriad's database should be made public. On one hand, Myriad deserves to use their database how they see fit because the company invested a lot of time and money to gather the information to fill the database with. Without the right to keep this information private, Myriad may never have had the incentive to make such investments. However, Dr. Nussbaum and his colleagues have a strong argument- Myriad's approach is contrary to the public health. The whole point of creating the database in the first place should be to identify and understand genetic mutations in order to improve people's health. Making the database private contradicts what should be Myriad's primary objective because it prevents researchers from using the data to benefit patients.
ReplyDeleteI also found the issue of confidentiality interesting. In the first article, advocates of making the database public claim that confidentiality is not an issue, while the NPR article shows that genetic information can actually be traced back to people. In the end, I think too much is at stake to keep the Myriad database private. If it is going to be made public though, laws and regulations need to be in place to protect privacy. Limiting who can access the database, as proposed in the NPR article sounds like a good place to start from.
To be honest, I don't have a particular preference for either side of a ruling because both are somewhat justified. Indeed, myriad genetics is potentially hampering the progress of this field, but they are also amongst those pioneering this field. If we were to consider this case in the context of "science's" best interest, sharing data might indeed be beneficial; this does not mean, however, no progress will be made-- undoubtedly myriad genetics will utilize their monopoly to profit, but also certainly to increase research in some field of study, otherwise the business will become unsustainable.
ReplyDelete,In regards to the privacy policy under debate, I think that if consent has been given, then it is undebateable. Obviously there are people who oppose this view, including the kin of Henrietta Lacks. Scientists recently rescinded a published paper because it came under scrutiny for having identifiable family genetic information. However, because the HeLa cells are deeply connected to cancer and hold benefits for their usage in research, I do strongly believe that if it were myself, I would allow the data to be published. For the time being, I do not believe personally identifiable information is a harm beyond an encroachment of privacy. In the future, however, as genetics become even more of a focus in science and literacy in these areas becomes greater, regulations regarding the sharing of this information will certainly need to be reassessed.
It should never be allowed for any one company to keep information and data from other companies for further research. If any information can contribute to the developments of future scientific advancements, it would be in everyone's best interest to have the information readily available for those who can have access to it.
ReplyDeleteI think it should be each individual patient's right to choose whether their information and history should be released to others, but they should also be educated about the pros and cons of this. Having your history available is beneficial for furthering research, but do you want your family history found online somewhere? Apparently this is a possibility. In general, I think information should be given more openly without one company, like Myriad, owning the rights to all of them. Keeping that in mind, the information should not be owned and/or distributed without the patient's consent. There are many ethical issues involved with this, and I think in the end it should be left up to the patients whether their information is shared.
I find myself indifferent as to whether a company should be allowed to keep information and data that they collected and discovered to themselves. While maintaining a monopoly within the industry of genetic testing may not be pleasing, at least the company looking to with hold all their findings is continuing to make advancements and discover new gene mutations. However, sharing their discoveries with the world would allow other research to begin and their would be greater number of opportunities to make new discoveries.
ReplyDeleteI am glad to see the issue of Myriad Genetics finally being settled in the Supreme Court. Gene patenting is an issue that is and will continue to be incredibly important as research in the area continues to increase. Personally, I think that Myriad should definitely share their database purely on the basis of assisting with further research. The databases should absolutely be shared with other researchers. Myriad currently has a monopoly over the BRCA 1 and 2 genes in the United States and this has the power to significantly stifle research in the area.
ReplyDeleteFrom a patient perspective, there may be some social implications. I believe that there would have to be very strict and carefully constructed privacy policies to protect patient information if the databases are made available. Understandably, a patient is likely to be concerned that insurance companies or prospective employers might obtain this information. The information could then possibly be used in a discriminatory manner. There would have to be a system for concealing names especially knowing that each individual's genetic information is unique.
Before I even began to consider the complicated legal jargon surrounding patenting, my visceral reaction is that isolating a gene to be used for diagnostic testing (such as BRCA1 and BRCA2) is an advance in science that everyone should have access to. As many of my classmates said, if more scientists have access to the database, then it could help advance genetic research more quickly. After reading a few more articles about the hearing that took place on April 15, I understand the constitutional questions at hand. The primary question is whether or not an isolated gene is natural, or a man-made chemical. The ACLU argues that an isolated gene is natural. They use the analogy of a cookie. They say that you can use salt, butter, sugar, eggs to make a cookie, and you can patent that cookie because of the way you arranged the ingredients, but you cannot patent salt, butter, or sugar. Patenting a gene is the same as trying to patent the common ingredients of a cookie. Myriad genetics tries to convince the Supreme Court Justices using a baseball analogy. They say that a baseball bat is made from a tree; they are the same material. However a bat is different from a tree because it is something that was invented. The Supreme Court decision is not yet published. It is expected to be announced in June.
ReplyDeleteWhen I take a step back from the arguments, I can’t help to be confused by the larger picture. It seems so odd that the 9 Justices of the Supreme Court are being asked to consider how patent laws apply to genetic research, a field they (most likely) have never studied or worked in. This is not uncommon. The Justices frequently have to make many decisions about topics they are not familiar with. There are many people working to make briefs for the Justices so they can become as informed as possible about the subject prior to making a decision. No matter how well the ACLU or Myriad genetics explain theses scientific questions to the Justices, there is still a great dependency on how they frame and possibly bias their educational materials. Seeing that Myriad is a commercial industry who has made millions off of these patents, I have no doubt that they spent a lot of money to build a very convincing, eloquent, and well-presented case of such a complicated topic. Unfortunately, I cannot say the same for the ACLU.
http://www.aclu.org/blog/womens-rights/are-genes-patentable-insiders-review-aclus-supreme-court-argument-gene-patenting
When the transcript for the case is published, it can be found here:
http://www.oyez.org/cases/2010-2019/2012/2012_12_398