Who should have access to a person’s genetic information
stored by private companies.
With company acqusitions
occuring like the one with Amgen and deCODE, will consumers find the rules
concerning the use of their genetic information will change when companies get
bought and sold? What will happen
if foreign companies buy American companies with stores of genetic information
that do not have the same medical privacy laws we have in the US?
http://www.genomicslawreport.com/index.php/2012/12/11/as-decode-departs-23andme-reloads/
The question about whether or not a person's genetic information should be shared as company acqusitios occur is something I have not yet considered. From what I have learned thus far in my genomics class, scientists typically sequence DNA from thousands of people in order to find genes associated with particular disease. As technology progresses and genetic data becomes quicker and easier to come by, unauthorized disclosure and misuse of sensetive genetic information becomes a common worry. I personally believe someones genetic information is their property. However, once a person releases their information to a private company there should be a standard confidentialit agreement about what they ca do with ones DNA, genetic test results, and family disease history.
ReplyDeleteCheck out the article below to get more information about this topic. There are a lot of interesting law cases in which the use of genetic information plays a key role.
http://www.bc.edu/bc_org/avp/law/st_org/iptf/commentary/content/1999060509.html
I don't feel that there is a simple answer to this question. My initial feelings are that only the private company and an individual should have access to a person's genetic information. However, then the question that comes up is what will the company do with the genetic information. With company acquisitions, I think that it is likely that the rules concerning the use of their genetic information may change as companies are bought and sold and new terms and conditions are introduced. In my opinion, when one company buys or acquires another company they become the new owners of that information. As the owners, they now have the majority of the say what happens to the data, how it can be accessed, and who may access it. I honestly am not sure what might happen if foreign companies buy American companies with stores of genetic information that do not have the same medical privacy laws we have established in the United States, but I feel that the potential for the information being wrongfully used or stolen increases. With every change, I think there is always a new possibility for the information to fall into the wrong hands, or the information may become more vulnerable because so many people have handled the information through all of the buying and selling. While I am not sure what exactly would happen, my gut feeling is that it probably would not be good.
ReplyDeleteThe issue at hand is one that will not yield an easy agreement between companies. I believe that once a company takes over another, they have full possession of all of the information within the previous company. It makes sense that the new company in power can do whatever they wish with the information they now own. However, I do not think it is beneficial for peoples genetic information to be shared, even under new power. I’m sure there is a lot of paper work that keeps one’s genetic information private but once a new company is in power those papers of confidentiality are useless. I think that before a company is bought out they should make sure they make specific privacy agreements with the new company to protect one’s genetic information. If one’s genetic information ends up in the wrong hands, problems may arise. However, if the genetic information can help a family or population then it should be put to good use. I still feel this requires the permission of the patient and the company should not be able to decide what is released without the consent of the patient.
ReplyDeleteThe following article reveals how easy it is becoming to access genetic information online and the potential privacy issues that arise.
http://news.stanford.edu/news/2009/june10/med-networking-061009.html
I agree with much of what Lauren has brought up in her comment above. Genetic information is very personal to the individual and the passing over of this private information across companies when they are bought and sold is a matter that should not be taken lightly. The rules for privacy may differ across companies so an individual cannot be sure of how their genetic information will be used when transferred to a different company. Some kind of security measure must be taken to ensure that the information will not be misused and in order to ensure that this information remains secure.
DeleteMy specific concern with this matter is in regard to the buying/selling of an American company to an international company. The rules regarding privacy in these foreign companies may not meet the standard of privacy within American companies. This poses a risk to the individual who had originally thought that his/her information was secure. There should be a written agreement regarding the privacy of genetic information when it is passed from one company to the next. This agreement should also be shown to those individuals whose genetic information is being passed along. It is our hope that these companies will only use the information for beneficial reasons that can help a large number of people.
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ReplyDeleteI agree with my classmates that once a company buys another company, they are the new owners of the information. This obviously makes sense to me. But at the same time, when it comes to genetic information or any other private matter it gets scary and complex. I think that with advance in science, we also need advance in regulations. I am not sure if this is possible, but maybe there can be a policy/regulation that says that if you sell the company, the genetic information stored isn’t included and if it is, then the person needs to be aware in advance that you are going to sell the company and/or the agreements need to stay the same regardless of the owner.
ReplyDeleteI think that its particularly dangerous for a foreign company with completely different medical privacy laws to buy a US company that owns genetic information. I think in that instance, consumers need to be told before hand what their plans are and given the option to remove their data from there. Again, I don’t think that this is something easy to do, but this is a complex question. Nevertheless, it’s scary to think that your genetic information can land in the hands of someone who you didn’t sign an agreement with and that ultimately they may choose to disclose that information with whoever they want.
As many stated above, it is essential for companies, like deCODE Genetics, to create extensive contracts with their clients that encompass all privacy procedures including if the company were to be sold. One important piece of this contract should be that the client has the option, at any time, for their genetic information to be removed from a company's database. Having this ability will allow more power to the client to control the fate of their own information. I am not aware if this is common practice already, however, I do believe it is important to implement.
ReplyDeleteAlthough contracts are a great idea when it comes to protecting clients' rights, they can become complicated for the client to understand. Like informed consent during research trials, it should be the company's obligation to clearly explain the procedures and make sure the client understands what can be done with their genetic information. Allowing for open communication between genetic companies and clients will build trust, and may even draw in more people to have their genome sequenced.
I think that anyone who is spending such a great amount of money to investigate their genomes deserves to have some (if not the majority) control over what happens with their results. Everyone that enters into this kind of scientific testing knows that the results are very personal, and should be made very clearly aware of what will happen with the results. Just how people have Genetic Counselors to explain the results of genetic testing to them, I think they should have someone (if not the same genetic counselor) explain to them what they need to do to protect their privacy. Although a contract will make it finalized in the law, we all know these things can be very long, tedious, and confusing. I think if an expert sits down with a client and goes through, step by step, what needs to be done to ensure their genetic results are only shared in places the client wants, everyone will be happy.
ReplyDeleteSome people will get genetic testing for the purpose of it being shared with other scientists and doctors. For example, people who are trying to get more information on the genetics behind an emerging disease. In these instances the clients should know, entering into the study, that their information will be shared. Others, however, who get genetic testing for their own personal knowledge (maybe due to past family history of disease) may not want the results to be shared with anyone. In order to protect these people from their information getting into the hands of someone they don't want, there needs to be both counseling and legal documents to ensure the protection of the results should the company be bought or sold. I think that doing these two things could make everything less ambiguous for all involved, and take the worry and pressure off of the client about if the company were to be sold in the future.
At the present moment, I believe that if individuals were given informed consent clauses, and chose to send samples to a private company for genetic sequencing or study, then they have voluntarily assumed the risk of information sharing. I recognize that this is relatively uncharted legal territory and little precedent has been set, but if an individual voluntarily submits their sample, in a manner, which covers all criteria of informed consent, then they are assuming the risk of information sharing. If a person gives this information to a private company and does not give informed consent for information sharing or research, then the company has no right to share or sell the information. In the future I think that it is imperative informed consent clauses be signed before all genetic research which details the parties which have access to the information.
ReplyDeleteWhen discussing the principles of genetic information rights, I cannot help but revert back to a conventional moral framework I have developed overtime regarding my opinions of the intersection between an individual’s autonomy and pubic health. I believe that a person should have full control over, all rights to, their own body until the point at which their choices jeopardize the good of the public as a whole. Following such a framework, I would argue that a person has full control and all the rights to their genetic information, unless giving access to this information to a select group of people could enhance the public good immensely. For instance, a person could decide not to undergo genetic sequencing, but if they contracted a contagious disease, which threated the population, and genetic sequencing could lead to a cure, the genetic information should be shared for scientific purposes.
I can understand why many people would be hesitant about sharing such information. For example, historic eugenics movements and threats of targeted biological warfare are legitimate concerns. While I understand the potential dangers, I am inclined to trust in the scientific society’s beneficence. I am intrigued by this topic, so found the following to sources to continue an exploration with:
Watson, JD: 1990, “The Human Genome Project: Past, Present, and Future,” Science , vol. 248, 44.
Weiss, MJ: 1998, “Medical Records On-Line: What Happened to Privacy? A Legal Analysis,” Perspectives on Law and the Public Interest , http://www.richmond.edu/~perspec/issued4/biomed.html.
Who owns your genes? In many cases, not you!...20% of genes already have patents on them!...Pretty scary stuff.
ReplyDeleteIt is pretty weird to see that about 20 percent of human genes, or about 2,000, already have been patented, including some associated with asthma, colon cancer, Alzheimer's disease and muscular dystrophy. Lawyers had argued that isolated DNA containing BRCA-1 and BRCA-2 gene sequences could be patented because it was different than that occurring naturally in the human body.
But in his ruling on Monday, Judge Robert W. Sweet of the U.S. District Court for the Southern District of New York said he was drawing on "long-recognized principles of molecular biology and genetics."
"DNA represents the physical embodiment of biological information, distinct in its essential characteristics from any other chemical found in nature," the judge ruled. "It is concluded that DNA's existence in an ‘isolated' form alters neither this fundamental quality of DNA as it exists in the body nor the information it encodes."
"Similarly, because the claimed comparisons of DNA sequences are abstract mental processes, they also constitute unpatentable subject matter
http://articles.chicagotribune.com/2010-04-01/news/ct-met-patenting-human-genes-20100401_1_public-patent-foundation-brca-genes
http://singularityhub.com/2010/08/11/who-owns-you-20-of-the-genes-in-your-body-are-patented-video/
http://www.nbcnews.com/id/39335222/ns/health-cancer/t/who-owns-your-genes-many-cases-not-you/#.URRd56U8CSo
In my opinion, a person’s genetic information should only be accessed by that person and whomever they choose to disclose the information to. However, with the change of ownership of a private company, this clear-cut discloser becomes questionable. Should the new owners have access to the genetic information? Technically they are the new owners of that information and do have the same rights over the information as the previous owners did. The buyers are able to use the information in any way they see fit. But the original owner of the genetic information is the person themselves. Do they want the new owners to have access to their information? Ethically this should be taken into consideration but I do not believe that it would be. I think the new owners of the private company would take over the position of the previous owners and the genetic information would continue under their control. If these buyers were an international company, this could lead to more issues. They do not have laws or privacy standards that we have in place here in the US and this could put the genetic information into the wrong hands. I agree with my classmates that this poses a risk for those who believed their genetic information was secure and private. An agreement should be put in place to allow the original owners to decide whether or not the new buyers can access their genetic information. But in the world of business I do not see this being a realistic solution. The intentions of new buyers, international or domestic, could be used for beneficial reasons or not and this is not something we can predict or possibly even control.
ReplyDeleteBriana Zinsmeyer
ReplyDeleteAs many have discussed, I think it is quite scary to think that other people have access to your personal genetic information. I think that there should be some sort of longstanding terms of agreement where you and whoever you choose may have access to your genetic information. Personally, I don’t think I would be comfortable with signing away all my genetic information, but if people choose to do it, then that is their own decision. It seems kind of crazy that just signing a piece of paper could be the determining factor of whether or not genetic information can be shared among the company. As others had mentioned, there is a possibility of that company selling the information or coming under new ownership which raises more questions to the confidentially clauses.
Those who choose to allow their genetic information to be shared with doctors or researchers for the sake of collecting data and assessing new diseases for instance should have to sign a different, detailed contract saying who has access to it and they then can sign off on it. Personally, I know many people, including myself, have signed off on agreements without fully reading them. In this case, I think it should be someone’s job to explain to the participants fully, to avoid any confusion or possible lawsuits.
This article discusses the protection of genetic information:
http://www.bc.edu/bc_org/avp/law/st_org/iptf/commentary/content/1999060509.html
Privacy is always a very important issue to many people. In my opinion a person’s genetic information should be treated the same way as their medical records. It should be private unless a person authorizes otherwise. There should be regulation made in each country regarding the use of genetic information, which at this point I assume there are. This is tricky territory if a person’s genetic information is given to one company which is later bought by a company in another country with different, possibly more liberal policies about who has access to a person’s genetic information. In this case I believe that the new company should not get access to genetic information until they have the consent from the person.
ReplyDeleteConfidentiality, security, and privacy are top consumer priorities regarding almost anything medical in nature, and genetic material is no exception. By having one’s genetic information decoded, they are in essence losing the only guaranteed sovereignty over the information and by storing it they are increasing their vulnerability. It would be a nightmare if the confidentiality of this information were violated. Employers, insurance companies, and suitors could potentially screen subjects based on their genetic makeup denying employment or health insurance. As such when the storage companies are purchased, there is an obligation to the customer to maintain the original stipulations of the storage contract regardless of the company’s country of origin. It is one thing for customers to suffer financially when a company is sold it is another, it is completely different for acquisitions to sacrifice their customer’s privacy in the pursuit of financial gain. Genetic information is empirically financially valuable and a commodity vulnerable to exploitation. Nothing invites exploitation like quite like greed.
ReplyDeleteHow our society chooses to handle having access to people’s genetic information will be very interesting. While it is tempting for companies to try to access genetic information to hire the best employees, I personally believe this is a very slippery slope. The companies who hold this genetic information also hold a great deal of responsibility to protect the information and therefore the trust of the public. If it came out that these companies were releasing genetic information to the private sector to use for discrimination purposes, I doubt that consumers would want to continue to use these companies to hold their genetic identities. Those who already have entrusted these companies with their genetic identities are due a certain amount of respect. They made an agreement with the original company that their identities would be kept safe and confidential and for the company to go and hand over all of that genetic information to an international company without regulations like those that were in place originally would be a breach of privacy for those customers. However, I do not doubt that there are many facets of this argument that are legal in nature that I do not understand. It would most likely come down to contracts, agreements, and minor details that would be critical for a legal case like this.
ReplyDeleteIt is a bit disconcerting to think that without your permission, your genetic code, the basis for your existence, could be in the hands of a company that you did not know. However, Corey brought up a great point about the current patenting of different areas of the gene thought to be associated with various illnesses.There is a lot that we do not yet understand about the genetic code and therefore also a good time to instill regulations (the ones mentioned in class were a good start), that detail situations such as these- private companies, because private companies operate much differently than do public entities, and much more differently than the medical community.
ReplyDeleteThat being said there are many similarities present to that of a medical record. They are confidential, yet even through privacy standards and plenty of regulations, there are still dozens of people and private companies that have access to it; from nurses and consulting physicians to insurance companies. In a way, your medical record reveals more about you and your medical history than your genetic code can at the moment. That isn't to say that we shouldn't start thinking now about the future, but it is to say that even privacy laws that we have momentarily aren't as effective and private as we would really like them to be.
Who owns our DNA???
ReplyDeleteWell in the US we have strict rules regarding our personal medical information. And I’m sure that similar privacy rules will also govern protecting the privacy of our genetic information. However, our laws that protect our United States citizens will probably not be the same laws or even be accepted in other countries. The issue with US companies being bought by companies from other countries will affect customer privacy.
However there is a way to protect customers. As long as US companies in particular take an iniative to come up with laws to protect and keep private their genetic information, and as long as ethical and honest practice is taking place, then all privacy concerns should not be a worry. Now if a company gets bought, which can happen, it is important for the original company to make this known to the customer before granting them services. And if the original company promises to keep customer information private no matter who owns the company then that should be sufficient. The most important part about companies being bought and sold is establishing laws of customer protection and making known to the consumers that either they will be protected or that their information will not and that they are taking a risk. As long as risk is communicated there shouldn’t be an issue. Communication from companies to customers is the most important thing to making clear what will be done with genetic information.
Now is it ethical to make your genetic information public, I’m not sure. I do know that big companies are supposed to be ethical but they don’t always act so. We will run into privacy protection with overseas enterprises who don’t have to follow ours. But by creating a body of law here, in the US, for patient/customer privacy will be a start to creating ones in other countries.
Until then map your genetics at your own risk!
Decoding and privately cataloging the basis of our identities opens several doors for the misuse of information. Even more so than medical records the individual patterns of our DNA need to be kept confidential and guarded. Angela rightly mentioned the argument about insurance companies denying coverage based on defective DNA. This is horrifying to think about but realistically would take experience rating to the next level. Private genetics companies could potentially strike deals with prospective insurance companies to examine the DNA of their clientele and make cuts accordingly. These motives are driven by greed of course, but we need to keep in mind that these are all businesses were dealing with. Genetic mapping needs a stringent standard of laws that every company must adhere to, therefore, when information is bought and sold it will remain protected under the same laws followed by every company. As with foreign companies, they have a responsibility to maintain the standards of confidentiality that they promised to individuals. The storage of this material, although beneficial to the advancement of science, is a gateway into the corruption of privacy. As we have witnessed in the past, companies are not always true to their word or ethical standards, so like Anthony said, "map your genetics at your own risk."
ReplyDeleteThe patient and the doctor should definitely have access to the person’s genetic information. This could be valuable to determining their health outcomes and possibly how to prevent them. I do not think these private companies should have access to the genetic information as they do. With the change over that would probably occur with the companies constantly being bought and sold there is just too much room for error. People’s genetic information could be confused with another person’s, lost, or possibly leaked to a person they might not want to have that information. The issue of foreign companies buying American companies’ genetic information is especially disconcerting if that country does not have the same privacy laws regarding genetic information. Could the person’s genetic information be spread or used for testing that the person did not authorize? If this is going to be a possibility in the future then international legislation should be put into place in order to protect people and their genetic information. Genetic information is too valuable to be bought, sold and changed to different hands a countless number of times.
ReplyDeleteThis article definitely raises loaded questions. If a company had someone's genetic information, it should remain confidential, just as any medical records would to protect the privacy of that individual. However, because they are companies that can be bought and sold, it is difficult to say what should happen to this information. In an ideal world, new companies would not just be able to take over all of this information, and patients whose genetic information was with the previous company would be able to decide if they wanted to disclose their information with the new owners. However, it is highly unlikely this would occur. I think the question of selling it to companies outside the US complicates this issue even more due to differences in privacy policies as well as the intent behind gaining this information.
ReplyDeleteAs pointed out in class a few weeks ago, with bottles thrown away, gum spit out – our DNA is already everywhere. But the thing that makes a huge difference is how it is used. I do not know the details of how genetic tests are conducted and what kinds of paperwork and procedures need to be completed beforehand, but consent from the patient/consumer must be involved. I think of it as a transaction, that a person is requesting a service in exchange for monetary compensation. In many other instances, by choosing to purchase something, we simultaneously agree to assume any risks (i.e. concerts, sporting events, medical procedures, dining at restaurants). I think the same applies in the situation, though we cannot yet make the assumption that we are fully educated about all that genetic tests and use (and potential misuse) of information entail.
ReplyDeleteIdeally, genetic tests and their results would just involve the patient and the party performing the test and interpreting results. This shouldn’t change with ownership of companies. (Note: Amgen acquired deCODE “in part for access of its data”, but an update from 12/12 on a separate article (1) says that Amgen announced deCODE’s genetic testing business (deCODeme) would be shutting down with the acquisition). As Morgan Minogue mentioned, scientists use data from thousands of individuals in order to be able to sequence genes. Being able to deidentify information (as can be done in other research) and remove links to particular individuals could help protect people’s identity. It would also help to allow people to choose how and what their samples and information are used for.
One thing that I picked up on by skimming through other students’ responses is that there is a concern for foreign companies taking over US companies (and their information) and maybe not so much vice versa. The opposite took place in the article written; Amgen is an American company, deCODE is Icelandic. Anyway, it would be ideal for there to be global policies and standards for such companies to adhere to, especially as such technology will keep developing. Having outside, third-party organizing oversee practices (and maybe even licensure?) could also help safeguard information.
(1)http://www.genomicslawreport.com/index.php/2012/12/10/implications-of-amgendecode-deal-for-genetic-testing-consumers/
Privacy laws and patient confidentiality regarding one's medical information are very strict in the United States. I believe that these are necessary and absolutely the right each and every the American citizens. However, no medical advances would ever be made if people did not have to sacrifice. It is an honor to be able to donate your body to science, as you can be sure (hopefully) that it will contribute to the good of humanity. If these companies are to use people's genetic information, they should not have access to an individuals identity. Yes, such things as age, gender, etc. are important and necessary, but being able to single out a specific person based on genetic information used for testing is immoral, unless permission is given by that specific individual. In terms of this information being sold to foreign companies, with the right amount of security and laws protecting those who's information it actually is, this is absolutely plausible. An unregulated system would result in people's identities being exposed against their will, which would go against what America stands for, that being the right to freedom (in this case to the protection of one's personal property, their identity). In conclusion, genetic information absolutely NEEDS to be accessed in order to make medical advances possible, but not at the cost of exposing people's identity against their will no matter how large an influence these wealthy companies possess.
ReplyDeleteFirst of all, I have to applaud these two companies; 23andME and deCODE are two very clever names to call themselves! Fun and games aside, this article posted by our Professor raises such a weighted question, when we sit down and really think about it. Who, at the end of the day, should own our genes? I for one do not know the answer, and I am sure many others do not know as well. In theory, yes, these genes are our own property, and we should decide who has the right to own/view them. But, by just taking a second to think down the line, there are so many bad possibilities that could occur if the public had that much control. Along with many of my classmates, I too like the idea of thinking of our genetic information as medical records. But even then, how safe is our genetic information if they’re stored in private companies that could be sold any minute?
ReplyDeleteWith regards to the specific case in the Genomics Law Report, this is without a doubt a scary situation. As Krista Zaremski put it, “With the change over that would probably occur with the companies constantly being bought and sold there is just too much room for error.” I also like what Jessica Guccione had to say: “The companies who hold this genetic information also hold a great deal of responsibility to protect the information and therefore the trust of the public. If it came out that these companies were releasing genetic information to the private sector to use for discrimination purposes, I doubt that consumers would want to continue to use these companies to hold their genetic identities.” In a sense, there is not really much that we can do about situations like this. It is almost frightening to think what will happen if foreign companies buy American companies with stores of genetic information that do not have the same medical privacy laws we have in the US. For our safety, let’s just hope a situation like this never occurs!
In the linked blog post on 23andme, they explain that the genetic information is procured by a diagnostic lab like ones owned by Amgen and that information is then analyzed for the consumer. At that point the consumer has access to their own genetic information but the lab is likely to retain those records. In the US there are laws defending rights to genes, in an article I found it regales the story of several individuals filing law suits against a large biotechnology company which specializes in genomic research, Myriad Genetics.
ReplyDeleteIn these cases several plaintiffs had their genetic make up tested but their genes became property of the company at the point of analysis. There is very little legal precedent thus far on the possible infringement on civil liberties however the idea of corporations owning genes has led to the burgeoning idea of creating patents for your own genes. To relate back to the original article, the purpose of the genetic testing seemed at first to the benefit of the consumer however, the data that is retained by the company may be used for other research purposes without the consent of the original owner. On the other hand, the idea of creating patents for our own genes would severely inhibit the research that might arise from a greater accessibility to rare genes; thus in the long run non-ownership could lead to future cures for genetic diseases. Patents may not be the route to go, but as Chris Gordon posted, perhaps the answer lies in coding the information and de-identifying genetic information.
http://www.project-syndicate.org/commentary/genetic-property-rights-on-trial
The right of an individual to their genetic information should not be violated if it is strictly agreed upon through the contract of services for genetic testing. Testing provides a lot of useful information for further research of the human genome but it should not be at the expense of breaching privacy of the individual. The politics surrounding this issue are trying to protect the investment of companies and furthering research rather than focusing on the direct impact it has for the individual customer of genetic testing. I think its is unfortunate that there aren't many more direct to consumer genetic testing companies and that adds to the issue of privacy when the information passes through different sources.
ReplyDeleteIn regards to the debate of genetic ownership, I feel that these issues are incumbent upon the extensiveness of informed consent. In order to preserve and protect the rights of participants I find it necessary for them to first consult thoroughly with an unaffiliated genetic counselor of sorts (just like Julie had suggested above) to ensure understanding of the terms and conditions of the company’s research intent and to make their client’s aware of the likelihood and impact of transfer of ownership. Like Erica and Emmy suggested before me, I would insert a clause that allows participants to withdraw upon transfer of ownership.
ReplyDeleteRegulations do seems to get trickier when applied at an international scale. Perhaps it might be too ambitious to implement “universal” regulations for genetic companies, however considering the omnipresence of genetics itself, I do not find it too far-fetched an idea.
In response to the article linked in this week’s prompt, I wanted to highlight some of the “pros” in company 23andMe upholding the direct-to-consumer approach. Whether it is the company 23andMe’s intention to or not, I believe that their decision to remain a direct-to-consumer (DTC) brand will only bring future benefits. To the participant, the DTC approach paints a picture of a consumer-oriented company. This notion is exactly what the client will be looking for in a company whose mission is to improve personalized medicine. I believe 23andMe will continue to see long-term profits despite lowering their genetic testing kit prices, as it will increase accessibility. At $99, no other test can be provided in a similar bracket. I think the competitive price alone is enough to ensure mainstream media backing; but if it wasn’t they also have familiarity on their side: the company is the brainchild of Anne Wojcicki, the wife of one of Google’s co-founders.
I believe that the only people that should have access to a person’s genetic information are the physician of the patient and the patient. I don’t even think that the private company should have access because if the company is shut down or bought out by a bigger company and the rules change, that could be traumatic for the patient. There are still many unanswered questions when it comes to DNA sequencing. I think the fact that there are risks to knowing or finding out what people are prone to developing later on in life can be detrimental to the patient. This is especially true when it comes to medical insurance. Medical insurance is already very strict about who can receive coverage, and people that work for insurance companies receive more money if they reject more people. Due to the sad fact that someone can be rejected insurance based on something as simple as a yeast infection, I think that insurance companies will very likely reject coverage to those that are prone to developing cancer, diabetes, or some other life-threatening disease. Insurance companies want to cover the minimum amount of sick people as possible. I think the release of this information will only reduce coverage even more or will dramatically change the restrictions that insurance companies use.
ReplyDeleteIn order for the private companies to be allowed access or even receive partial ownership, there needs to be strict regulations and rules on who has access, who can use it, and what will happen if the company is bought out. The patient’s confidentiality needs to be treated with the highest priority. The patient is spending a great deal of money in order to sequence their DNA hence they should be given full ownership.
http://www.bc.edu/bc_org/avp/law/st_org/iptf/commentary/content/1999060509.html
I agree with many of the responses above that an individual's genetic information should be held in the same manner that medical records are held. It would be simply immoral to have identifiable data linking each set of DNA information to a singe individual. If the genetic information were to be unidentifiable at least, then I don't believe this situation would be so controversial. In any event, although I believe that we are the ultimate holders of our genetic information, I still do think that once you give a company permission to take and analyze your genetic information, that it somewhat becomes their responsibility to hold as well. I believe it was mentioned in class that just about everything we come in contact with has a bit of our DNA on it. It would be difficult or even almost impossible to make a law stating that you cannot analyze and hold an individual's genetic information when there are used soda bottles and things like used gum easily attainable from waste-baskets containing a person's DNA. So what makes it wrong to have a company withhold a person's genetic information? Where do we cross the line?
ReplyDeleteThis is an incredibly gray area, and especially when we bring in the factor of these DNA testing companies being sold in the future. At least in the US, I believe if a company is to buy-out another company, they should have very similar policies as to how to handle their stored genetic information. Privacy and confidentiality laws could be of some help, but can become void if a company from OUTSIDE of the US buys a US company. That, I believe, should be the biggest concern to individuals who have gotten their genetic information sequenced.
Similar to comments above, I think there is a delicate balance of responsibility between private companies and individuals concerning the accessibility and uses of sharing genetic information. Private companies researching and storing the information must provide and ensure clear informed consent of customers, and individuals must be responsible for understanding that they are essentially selling their DNA and therefore assuming the risks associated with making that information available. Once the agreement has been made, I think the company has the right to use information however they choose within the limits of the signed consent agreements.
ReplyDeleteHowever, when it comes to companies dealing with bankruptcy and acquisitions,
consumers could find that the rules concerning their genetic information are subject to change. For example, the company 23andMe’s Privacy Policy states that in the event of “a merger, acquisition by another company, or sale of all or a portion of its assets, your personal information and non-personal information will likely be among the assets transferred.” I think the legal process would require the buyer to have the same purpose and intent for the information, and the individual would have to be made aware of the transfer and given a choice to end their agreement at any time. This is still a cause of concern, as there is not much precedent for this type of case and seems there could be major loopholes with clarity and chains of ownership regulations.
In the case of acquisitions by foreign companies, these issues would only be intensified because of differences in Government regulations and privacy laws. The U.S definitely has stricter medical privacy laws than other countries, and an international sale would raise a lot of problems how genetic information would be protected. If I had sought out one of these companies, I would certainty make 100% I could terminate the agreement and remove my information from the database before it could potentially be sold to an insurance or pharmaceutical company.
When answering the question of who should have access to a person’s genetic information, I asked myself who I would want to have access to my genetic information. Obviously, I would want access. But, also I would want my primary care physician to have access. Because your primary physician knows you best, I believe that they should be able to reserve the right to any of your medical information. As far as the private companies who store the genetic information, I would not want them to be able to access my information. If the company exists solely to store the information, then there should be no need for the company to need access to my information. If for some reason they do need access to my information, I would expect at least a call confirmation asking if they can use it. When companies are bought and sold, the patient should be notified and asked if they would like to continue their service with the new company. People who do not want to continue on with the new company should be able to destroy their information before the transfer. People should especially be able to opt out when the company changes internationally. However, I think that the most important thing that a company can do when they are bought out (no matter who or where they are bought out) is tell the consumer and also give them the appropriate information for them to make an informed decision of whether they want to continue on with the new company.
ReplyDeleteThis article raises many concerns that arise with the advancement of genetic testing. The paradox truly exists, in that the more progress made in the research of genes and genomics, the more risks and potential problems arise and since all of it is new territory, there is no real precedent as to how to handle these tricky situations. As Sara Shilling and others have mentioned, I think genetic information should be treated the way we treat medical records, in that the information should be private and kept between those that the patient gave consent to. However, when one company buys another company, does that company now have ownership of the genetic information? On the one hand, it could be argued that the person willingly gave their genetic information, and so they have no right to argue what the company does with that information. On the other hand, the person most likely gave the genetic information with the assumption of privacy, and therefore if the company is bought out, it would violate the privacy of many if they were to hand over all of the genetic information of many people.
ReplyDeleteI think the best way to handle this is that the new company could only get rights to the genetic information by getting consent of each and every person. Though time-consuming, it seems like the best case scenario and solution until another and hopefully better solution comes along. Though with more time and experience in handling situations like these, it is with hope that we will find a better and more precedented way to handle this.
The debate between genetic privacy and research is one that must be considered from all perspectives. Your genetic code is the one piece of information in your body that is like no other, along with your fingerprint, it is characteristically the most densely packed personal information we physically have. Therefore, you can imagine that this material in the wrong hands could expose someone’s private matters. On the other hand, it is important for companies such as 23andme to continue genetic research for the future of medicine. Decrypting genes and identifying which disorders or tendencies they affect will have a significant impact on how we treat every patient. As important it is to encourage people to give their DNA to research companies, it is just as important for these people to feel that their genetic information will be only used for the good of medicine and not feel endanger.
ReplyDeleteWith the current acquisition of U.S. genetic research companies and international genetic companies, this may cause a weaker regulation and safety system, as the laws in foreign countries on genetic privacy may not apply the genetic information once it is sold. Therefore in a situation like this, the DNA donor would have to be contacted and authorize a continuation of the research with their specimen. Realistically, a person’s DNA ownership and privacy is constantly at risk. Anyone who desires your DNA could simply pick up a can of soda you have been sipping from or a strand of you hair. In the well-known book The Immortal Life of Henrietta Lacks, describes a woman whose cervical cancer cells from the 1950s have multiplied by the millions in laboratories across the world and been the central component in several research studies. The cells were termed HeLa cells to remain some confidentially, but the book analyzes the ethical concerns of the privacy issues that exist. In conclusion, I believe genetic research trumps all personal privacy reasons, but within the constraints that companies using personal DNA samples must maintain austere regulations on security and that no one’s DNA should be profiled or examined without his or her consent.
I personally do not believe that private companies should hold genetic information. I feel that there is always a way for information to be leaked out to those who should not have access to that information. That private information being leaked can reveal a plethora of information about any specific person that is extremely personal (i.e. genetic disorders that run in the family). I know that companies need access to a lot of people's DNA for research purposes, and I am all for this kind of research. However, I believe this information should be destroyed as soon as possible so it does not end up in the wrong hands.
ReplyDeleteCompanies that store this type of genetic information being bought and sold are exactly why I do not agree with companies keeping this information in the long run. The rules regarding this information change when this information is passed on from one company to another during the selling of a company.
If foreign companies buy American companies that store genetic information that do not have the same privacy laws as the United States could end up in a disaster in my personal opinion. Again, this information can be used in ways that those who donated their genetic information would not approve of. And as I mentioned before, this information could end up in the wrong hands.
I feel that if a company that stores genetic information is going to be sold, they should ask the consent of every single person that gave them genetic information, about whether or not their genetic information can be passed on to the new company. Another intervention could be to ask about such a situation to those who donate their genetic information on their consent forms. I feel that we are the owners of own genetic information that that companies should very limited and regulated access to such information. I also feel that stricter laws regarding access to genetic information by companies that store such information should be enacted in foreign countries.
As indicated by some of my classmates, people who are willing to give up their genetic information in exchange for research or medical purposes should be aware of the risks involved. As Sophia stated, individuals should be subjected to informed consent, and made aware of exactly how that information will be used. I'm sure that there is a certain level of confidentiality in the research and procedural processes at these companies, but the data and results are needed to for advancements and quality control. When one company purchases another, all of the information will probably be transferred as well, but the patients need to be reassured that the information provided will stay private. International trade of these companies may want to include contractual agreements that the same level of confidentiality will be kept with the company. However, this may be difficult to enforce. Furthermore, many other companies or companies from other countries may not share the same ethical concerns for the use of this information. Many genetic procedures are widely debated for their ethical and moral value/implications, and patients who disclose this information may not approve of its use in the future. All in all, I feel that the research conducted by these companies is important to uncover the mysteries that lie within human DNA, and much of this information should be shared with the world, with respect to confidentiality of course.
ReplyDeleteThe topic of genetic information and privacy rights, reminds me of many of the concepts I learned in Medical Ethics that I took last semester. Once an autonomous individual gives informed consent, he or she is also acknowledging any of the risks (including the risk of sharing information) that may arise. Although the likelihood of sharing one's genetic information with other companies may not happen, by taking part in informed consent I believe that the individual is also consenting to risks that may occur. This is not fair, but it can happen, especially if foreign companies buy them. Ideally if another corporation takes over, it should be its responsibility to get informed consent from everyone who gave them genetic information, but nothing is perfect in the real world.
ReplyDeleteMany people are worried about the misuse of genetic information for insurance and employment purposes. If private corporations with genetic information are sold the new corporations may allow different businesses to have access to the genetic information. If genetic information is used by insurance companies this may cause premiums to be higher or lower, or give them the power to deny or accept individuals. In addition, if employers have access to an individual's genetic information, this may help decide whether to hire or fire them. I believe that an individual's genetic information is his or her own property; however when one gives informed consent one is acknowledging all the risks that may come along. There are many businesses, especially health insurance companies that may want access to an individuals genetic information, and may even be allowed access to this private information if companies are bought or sold. In order to help make genetic information more private, more regulations need to be put in place. There should even be a regulation that companies with genetic information in the U.S. cannot be sold or bought by foreign companies due to different countries having different regulations.
This article focuses on ethics issues that may arise from sharing one's genetic information:
http://nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/vol132008/No1Jan08/GeneticandGenomicHealthcare.html
Privacy and confidentiality are protected in the United States by HIPPA laws, this is not true in many other countries. When patients approach/ are approached about genetic research the concerns raised in this article should be addressed in the disclosure. Many companies would not be willing to tell patients that there is a risk of being sold, this is a risk to any type of business. If this were to happen the procedures that the company who owns the information would take should be outlined in the disclosure and written in the informed consent.
ReplyDeletePutting aside the idea of a buy out, there is also the risk of hackers being able to get into the information stored on a computer. Multiple security measures can be taken but if the person can get around them they will have access to many people's genetic testing. This to me seems like a much more problematic confidentiality issue than does the risk of purchase by a foreign company would be. Although the identity of people who are genetically tested is removed or encrypted, a recent study has shown that determining the patients identity is a lot easier than one might think. Analysis of family trees and publicly available information can be used to successfully complete this task.
http://news.ca.msn.com/top-stories/scientists-demonstrate-how-hackers-could-unlock-your-genetic-secrets
If companies merge or when one is bought/sold, consumers should be notified of changing policies and given the option to provide their consent. If the individual had agreed to a certain policy/contract, then those principles should be upheld and should not change for the consumer, unless they accept the new terms. If companies are able to go against their initial privacy policies and change the way they use consumer information after joining another company or being sold, without seeking permission from the consumer, then contracts should never hold any significance...what's the point if it can be violated? Individual medical privacy is something that should not be treated like a business...bought/sold...there should be greater respect for individuals and their medical information.
ReplyDeleteAs a realist and basically a person who hates the pharmaceutical industry I can only be disgusted by the idea of private for-profit companies being the people behind having access to my genetic information. It is very obvious as to how this information can be used and distributed without one’s consent. It is like making a single song and having people torrent the song and you not seeing a dime of that profit because the private company can do what they like with your information. The rules concerning the use of our genetic information will inevitably change because new rules are drafted up when companies are bought or sold. As many others have stated it just is a privacy issue and the client should be able to retract their genetic information at any given time. The idea that someone other than you is simply selling, sharing, or buying the genetic makeup of someone blows my mind because these types of things are sensitive subjects. The ethics behind this makes some people squirm and that says a lot in itself when it comes to sensitive and ethical issues. If the idea of cloning another human being can unease you it is an ethical issues.
ReplyDeleteThere can be practical ways of using genetic information of a client, but it should only be disclosed to the client afterwards and then deleted for further use unless for the use of research which in case the client should be treated as an actual client and not just genetic material. I am glad Briana brought our attention to the discussion of the protection of genetic information because people do need to be wary of what they sign off on.
The primary ethical dilemma at hand is who owns genetic information when genome sequencing is purchased through a private company? After reading the responses of my classmates, there seem to be two main suggestions. One is that the individual owns the rights to his or her genetic information (Under this I would also include the individual and his or her physician – an option several people mentioned.) The other suggestions is that the individual and the company should agree on some sort of degree of use of the genetic information through an informed consent process similar to the one used in the current model of western medicine.
ReplyDeleteThe problem I foresee is that the number of current applications for genetic information is constantly increasing. If an individual agrees on certain uses for his or her genetic information today, there may be novel opportunities in the near and distant future. It could be possible that the private company and the individual have an open dialogue about the use of their information for newly discovered applications, but what happens when the person is deceased? Will their next of kin inherit the ability to make such decisions?
The ethical debate about how to use one’s genetic information also provides a platform for the question of how to disclose genetic information to the customers themself. The article cited by some students by Marcia Weiss from BC law touches on this controversy. The article highlights the fact that not everyone wants to know all of the information that is possible to learn from genetic testing. If someone wants to know only a limited amount of information from the genetic test, yet they permit the company to use the results for their own research, does the company then have the responsibility of hiding the identity of the customer as to protect him or her from discovering information about their genome that they asked not to be party to?
There are endless scenarios to consider. It is difficult to have a proper debate when the possible applications of such information are so vast and also so abstract. However, I do believe that there needs to be some sort of universal law to protect abuse of private information. My fear is not that a corrupt person will misuse private information, but rather the present understanding of such technology is limited so that our current uses will eventually seem barbaric and unethical – as has happened before with the combination of new scientific endeavors and the natural human desire for improvement through genetics.
I believe that in this day and age, people seeking the services of these genetic information companies must be extremely delicate with the agreements they make. At the very least, consumers should be aware that if a company does change hands, they do have legal rights to the genetic information stored. This could be a clause that needs to be searched for by customers, if said company does change hands, will the customers have the option to withdraw or block their genetic information from being used in certain venues.
ReplyDeleteThe responsibility lies with both the company to make appropriate use of this information and the consumer whose job it is to adequately educate themselves before giving information as sensitive as their genetic coding away.
If companies are dealing with consumer genetic information, the consumer should be able to select whether they wish to keep their data private or release it. I believe that this data would be beneficial if shared for research purposes. Consumers should be fully informed when making decisions about sharing their genetic information. If consumers wish to share their data, their names and any other identifying labels should be removed from it. This would allow consumers to retain their anonymity while still sharing their data either national or abroad. However, given that genetic information is the most personal of data sets, consumers should still retain the right to keep it private. As genetic testing becomes cheaper by the day with more participants opting to get tested, this is an issue that will have to be addressed more throughly.
ReplyDeleteIn regards to foreign companies buying American companies, ethically speaking it is in the best interest of both those citizens whose genetic information is being stored and also those American companies to have policies that ensure that the privacy of the citizens remains top priority. Even if it is not written down in stone, the companies have a moral obligation to protect those who have entrust their information to them.
ReplyDeleteAs many of my classmates have already said, though, customers already should have a thorough knowledge of what is being done with their genetic information and what will happen if a foreign company were to take it over. However, there should also be policies in place that only allow the information to be handled the way in which the customer is comfortable with if foreign countries buy the data.
While I believe that your genetic information belongs to you, I doubt that companies believe the same thing. There should be regulation to obviously state who has the rights and access to someone's genetic code, because if not controlled, companies will always use information for their own benefit and profit. If we can't regulate companies, then how can we regulate other entities like employers? If anyone's seen the movie Gattaca, then they may remember a quote from Vincent where he says,"I belonged to a new underclass, no longer determined by social status or the color of your skin. No, we now have discrimination down to a science." Here he talks about employers discriminating people based on their genetic code, and they can sequence your code and log the information with or without your knowledge or consent, so that is my only concern, the protection of our genetic data.
ReplyDeleteHaving one's genetics decoded is somewhat of new technology and has not provoked much thought on my part. Since genes have become a topic of interest as of late, topics like these have been striking some interest. I would imagine consumers would have a contract with the original company at first. With the new company taking over, if they want to use the consumer's information in anyway different than the original contract, they would have to contact the consumers and ask them to sign an updated contract. Any new consumer would fall under any new policies, where existing customers would not fall under any of the new policies unless they had updated their contracts.
ReplyDeleteForeign companies would also be required to follow such rules if the company remains on U.S. soil. If the company moves abroad, then the rules they must follow must coincide with the location of their base of operations. This is where previous customers may fall into some worry. This leaves the consumer unsure of how their personal information will be accessed. However, this also leaves the purchasing company vulnerable, because what is the company if it has no consumers? If the consumer finds out their information is, what they believe, wrongfully used, then they have the power to taint the name of the company. If the company name becomes so tainted, they will eventually fall, even if their base of operations is on foreign soils.
An individual has complete right to their own genetic data unless they are willingly offering away to companies. This already occurs on different levels in our current society. When a person goes to a sperm/egg donor program, they are willingly signing away their DNA (in a different form) and no longer are able to retain their genetic information. The rules of exchanging genetic information will definitely change within the near future. The genetic information market is a relatively new idea and future problems concerning scientific research and moral ethics will surely come up. The laws (or currently lack there of) will be constantly evolving as the market grows and begins to affect different parts of our industry. The US government/ genetic companies should not be selling genetic information internationally until a set of laws is created through the compromise between the WHO, the UN, and governments that want to participate.
ReplyDelete