TAG of the Week:
Direct-to-consumer genetic testing companies such as 23andme have provided individuals the opportunity to learn about their genetic family history.
Read these two articles. Are we (society) ready for this personalized genomic revolution? What are your thoughts on blaming the consequences on the DTC companies? How do we remind consumer of personal responsibility? Support your post by discussing the positive and negative aspects of using these types of DTC genetic services.
Article #1:
http://www.cnn.com/2014/09/18/living/global-family-reunion-aj-jacobs-parents/
Article #2:
http://www.entrepreneur.com/article/237732
The search tools provided by these companies undoubtedly turn up some amazing stories, but such outcomes are uncommon and I actually feel that these tools being available to the public does more harm than good. The stories mentioned in the articles about families getting broken up or just very confused are extremes as well, but in general I think these tools just complicated peoples' lives. Aside from patients being proactive about potential genetically related disorders or a few special cases of families searching for relatives, I don't see a need for anyone to search so extensively through their family network.
ReplyDeleteFamily is supposed to be quality over quantity, and I can't see a need for people to try to reach out to 5000 people just because they are technically in their biological "family." Personally, I would be irritated if an extremely distant relative kept pestering me to attend a reunion so massive that it lost all personal meaning. On the other hand, some of the connections that surface really are fascinating, like Obama and Ted Cruz being distant relatives.
When unfortunate things do occur as a result of these searches, it isn't right to blame the companies for providing the search tools. If people are taking the initiative to seek out distant relatives, they should be prepared to face the consequences, whether great or disastrous. If they don't already, these companies should post some serious disclaimers on their pages.
I agree with Emma, and I think the most important point she brings up is that genetic testing can be used to save lives. I think with the introduction of 23andMe and other DTC companies that find genetic connections between people, it has become a fad to use genetic testing for more frivolous matters than the information should b used for. Genetic testing can be used to find diseases before they manifest, which can save lives and prevent a lot of hardship for families. Using the information to find 5000 people who are related to you can take attention away from the fact that this technology can be used to help people.
DeleteWith that being said, I think it is a little dangerous to provide genetic health information without a doctor or a genetic counselor available to guide the person through the process and explain any abnormalities that they may have. I think it is a little dangerous to provide health information using a DTC. Although it makes the information more accessible to everyone, it does not give that much information or support to people that may have genetic abnormalities and may need further follow up with doctors and genetic counselors.
I agree with Selby in that I think it's extremely important to have a doctor or genetic counselor present when dealing with any kind of outcome in regards to a genetic test. When addressing the benefits and downfalls of genetic testing, one downfall that often arises is dealing with an unwanted conclusion or diagnosis. While some diagnoses may be considered a blessing and individuals feel relieved knowing that they are not a carrier for or do not a have specific disease, the opposite result can be quite detrimental and these are results that genetic counselors are trained to deal with. Therefore, adverse outcomes should be expected when providing all the tools to “self-test” for a consumer as this person, presumably, does not have the same level of experience or training as a professional genetic counselor.
DeleteOn the other hand, I do not think that companies such as 23andme.com should be responsible for any mishaps or unhappiness caused by using their products. Firstly, those who choose to engage in the services of such companies and website are doing so voluntarily. They don’t necessarily know nor can they predict what kinds of outcomes their consumers may experiences, and what emotions may be associated with this. Though they are the ones that are often blamed for an unwanted outcome, this, in my opinion, is just a default as the the consumer might now know where to direct his or her anger if they are unhappy with the result of their DTC genetic test. In regards to this issue, Anupriya brings up a good point, that it’s society’s “first instinct” to put the blame on these companies, when it does not know where else to turn or who to blame but themselves.
Regarding these two articles, it may seem that society, as a whole, may not be ready for a personalized genomic revolution. It seems that this type of testing is in its early stages, and more and more unwanted consequences are being exposed. Because it is such a relatively new technology, there is going to be a lot of problems, and of course, this the natural course to make technology better: revealing problems and fixing them. But in terms of genetic testing, it may be that these problems cannot be fixed, it seems that they can only be avoided.
ReplyDeleteIn the article regarding 23andme, an unforeseen problem in the testing resulted in a divorce of a marriage. Although the family voluntarily selected to see their closest genetic connections, they had no intentions in uncovering this information. Whether or not the discovery of an affair is an entirely different matter, but the family had no notions that a grave matter as this could result. In addition, there may still be inaccuracies of the test. It is very possible that there may have been errors of which the company itself is unaware. The family also jumped to the conclusion that the 22 percent match without a doubt meant that there was a family connection. It is hard to interpret the results if one is not well informed of the subject matter.
Wallace’s article had some very interesting points. I think that would be very fun to find relatives and some of these people in the articles had family trees of thousand of people, but where do we draw the line? Is not every human related to each other in some way though a common origin? Where does family begin and end? Personally, I cannot understand the purpose of making a family tree if one cannot draw the boundaries of what constitutes a family.
I agree with Danny on Wallace's article. His attempt to connect the entire population on one genetic tree is interesting but futile. It may be fun to find out you are distantly related to the president but people will take that information differently. I anticipate that some people may want to connect with their relatives but as Danny said "Where do you draw the line." What is someone supposed to say if someone contacts them and mentions they are distantly related. What are you supposed to do if you discover you are dating a fifth cousin? This is a new field and there will be both beneficial and negative outcomes to what people do with genetic information.
DeleteTest
ReplyDeleteAs a developed, technologically advanced country, we should utilize and manipulate our genetic information to the best of our abilities for our own benefit. Whether it’s seeking distant relatives across the world or understanding the closeness in DNA composition we have with other people, it’s power that we’ve never had before, and with any new information in science and technology, we should continue in promoting its advancements and diminishing any harm or consequences. I think that having such information about our identities provided by companies like 23andme, can be highly valuable and influential to our lives and more research should be funded in their development.
ReplyDeleteWith that said, I believe that direct to consumer testing is still a research project in the process. It’s these companies’ responsibility to fully and clearly layout what they’re providing to us, what this information means to us, and how we can use it. Based on the outcomes of the articles, it’s clear that many consumers do not entirely understand what these companies are laying out for them, nor are many people responding positively about it. I do not believe that society is mentally and intellectually ready for such a genomic revolution. Direct to consumer genetic testing is still in its early stages of making its renowned debut to the public. Even though many companies may not be advertising or promoting it’s services to the fullest extent, people will definitely jump to conclusions about their results and make unjustified arguments against the companies purposes – but this is to be expected. It’s also the responsibility of the consumers to research for themselves and seek information before getting tested to later understand the meaning of their results. This relationship between the companies’ responsibility of providing clear-cut information to their consumers and the consumers’ responsibility in learning for themselves of what benefits DTC will provide to them, is what will guide society in progress of this personalized genetic revolution.
In direct response to the articles, my thoughts in blaming the DTC consequences are that the blame is not justified and people need to take their own responsibility into account. The second article, where it describes how 23andme “caused” the divorce between the biologist’s parents, was very ridiculous to me. First off, it seems like the biologist hastily bought these genetic tests, showing that not him nor his parents had any prior knowledge of what they were getting into, besides a “more in-depth look at who they are and where they came from.” Whether this is the fault of the company not providing information or the faults of the biologist and his parents that learning of what they were getting into is unclear. Secondly, the biologist intentionally checked off the box saying that he’d be “notified of his closest genetic connections,” so he undoubtedly wanted to know of his relatives so isn’t it expected whether you know your relative or not, that they will pop up in the results? Thirdly, the results showed that 22 percent of genetic makeup matched with another man, and if such man wasn’t his half-brother, then would have it mattered if his long lost relative was his grandfather or uncle? Would his parents have reacted in the same way that they did? Finally, I believe that the divorce was the parents’ personal problem, and their problem only. It’s the father’s fault in hiding a ten-year old secret of having a premarital affair and a love child, and it’s his dishonesty and lack of communication with his wife that lead to their divorce. Therefore, I don’t believe it’s fair or reasonable to blame 23andme; it was unintentional and unexpected that such an outcome could happen and it’s the responsibility of the consumer to understand what to expect.
I take issue with many points raised in the CNN article. For starters, the notion that we need to make a "family tree" to justify caring about other members of the human race is backwards. Whether or not someone is a distant cousin should have no bearing on the level of compassion we have for each other. The fact that this mentality clearly escapes the author and her subject reflects very poorly on the acceptable attitudes of many Americans today. The author also mentions Jacobs admitted to being slightly "idealistic", but I would argue that his whole endeavor is more narcissistic than anything. What does it say about our society when people value a 15th cousin simply for their celebrity status? This is completely irrelevant information of which I really struggle to find any benefits, health related or not.
ReplyDeleteIn terms of the second article, I agree with many of the points made by comments above mine. I like Catie's point about people needing to be prepared to deal with the results, whether or not they are easy to hear. This seems obvious to me, but then again I would probably never use a service like 23andMe. I think the article's overall message is valid: that companies need to be aware of unintended consequences of their service. However, when it comes down to it, I don't blame the companies for doing what they advertise. It's the consumers' right to purchase genetic information, and with that comes the responsibility of dealing with the outcome.
I agree with Molly. The CNN article seemed a little narcissistic and frivolous. And it seemed as if AJ Jacobs is only using genetic testing for his own personal benefit. And by this, I mean that he is trying to make the world'd biggest family tree, the world'd biggest family reunion, and writing a book. It would appear that he is only doing this for personal fame and not really doing anything truly beneficial to society as a whole. As a society, we can use DTC organizations to do much more clinically beneficial things for ourselves and society as a whole.
DeleteThrough our class discussions and reading these two articles, I do not blame the company for the problems that the test results have caused families. Nobody is forced to send their DNA into the company, they choose to do so and pay to do so. I very much so agree with Dea's comment about giving people access to as much information as possible. We have a right to choose what we do and do not want to know about ourselves, and if it is possible to find out, we should have the power to do so. Ignorance may be bliss when it comes to topics like affairs and love children, but that does not mean it is the companies' fault. The father knew he had, had an affair, and still sent in his DNA.
ReplyDeleteWhen it comes to the article about AJ Jacobs, I agree with the comments about quality of family over quantity. It may be cool to know what celebrities you are related to, but in the end, most people are related in some way. It can be a cool project to take on, but consumers need to realize that they could find out a lot more then what they are expecting to. The company should make it very clear that people cannot pick and choose what genetic information they discover and that they should be prepared to find out everything. Many consumers would put more thought into their decision to undergo genetic testing if they know that they could discover life changing information.
Neither of these articles touch on the health aspect of DTC testing. I believe the health aspect is the most important. Someone may be looking for their family tree and discover serious genetic predispositions. The companies should provide resources including physicians and genetic counselors for consumers who choose to undergo testing. It is irresponsible to throw all of this potentially heartbreaking information at someone without any kind of warning or support systems to follow up with. Consumers do take it upon themselves and choose to get the testing, but I do not think the average person realizes the potential ramifications of such testing. The companies do. Because of this, they are responsible for providing warning and support for DTC testing.
I am on the side of the spectrum where I think there has to be a pretty darn strong reason to undermine someone's autonomy and not present the information that allows them to make the choice that they would most freely make at the time. For example, the post about how 23andme "broke up a marriage" is disingenuous. The dad of the son who got the genetic tests was knowingly living a lie his entire life by never admitting to having an affair with another woman. 23andme wasn't to blame for this, the husband was acting immorally by not respecting the wife's autonomy and by extension her right to self-determination. By not allowing people to be as informed as possible you are essentially playing God with people's lives and making a determination about what information they are capable of handling, you better have a stronger societal interest in mind to justify this.
ReplyDeleteThe other article about building a family tree to me does not strike me as something that pushes genetic testing too far. Do I personally care who I am related once past my immediate extended family? No not really, but other people might get a kick out of it for whatever reason. I do wish as a society that people would view this like I do, but I don't think that alone is sufficient justification to limit this sort of family tree creation. It is more important for people to put humanity first, but I'm not sure that you can prove that people who like genealogy are less likely to be humanistic. Regardless, it would be nice if we cared more about those unrelated to us. There is a song I listen to by a band named Circa Survive that states: "If blood is thicker than water then we'll drown quicker than we intended." This quote rung true for me during this article.
DTC genetic testing had a purpose to provide individuals with information about their health. It allowed individuals to discover whether or not there was a genetic health disorder within their family. It allowed individuals to understand why they have a certain disease. It even made individuals aware that they have a certain medical disorder. However, now it seems as if the main purpose behind DTC is lost especially in regards to the CNN article. After watching the video and reading the article, it seems as if AJ Jacobs only cares to beat the world record in having the largest family reunion. Yes, it’s pretty cool that we all can be related and are distant cousins but that was not the main purpose that DTC was for. It was so individuals are aware of medical problems they may or may not have. Also, he thinks it may allow people to be more “open-minded” about each other, but we should always be open-minded about each other, whether or not we are related should not matter.
ReplyDeleteNow for the second article, 23andme should not be the ones to blame for giving information that was true but hurtful because it was the father who was living a lie his entire life by not telling his family about a pre-martial child. If you are going to take a DTC genetic testing, you need to prepare yourself for what will happen. You should not go around blaming a company that is giving you accurate results that you voluntarily signed up to do. You need to be ready to accept the responsibility for what will happen after you receive the information. This is a personal responsibility because no one is going to force you to do a DTC genetic testing. The companies should advertise when a consumer purchases a DTC genetic test that there will be a personal responsibility for the consumer and the company will not be held liable for any information that may be upsetting.
To answer the question on whether or not we are ready for this personalized genomic revolution, I am hesitant to say yes based on these two articles. If a family is going to blame 23andme for causing a divorce because a husband was not honest with his wife, or if someone wants to hold the world record for the largest family history than I don’t think we are ready for this personalized genomic revolution. But if consumers are curious about genetic medical problems and will be holding a personal responsibility with the information they will be given then yes we will be.
After reading both of these articles about direct-to-consumer genetic testing, I was surprised that people could trace family members so well, that they can find out who is related to whom. The articles presented two situations that I’m sure are rare. What are the chances an individual finds out he or she is related to President Obama? I’m indifferent to DTC genetic services. I think that people have a right to use these services to find out more about their personal genetic makeup or find out information about family. Personally, I would not use these services. I think that if I really wanted to learn more about my family history I could ask my parents and family members. If I wanted to understand my genes, I could go to a more reliable source.
ReplyDeleteIn the first article about Jacobs and his interest with family genetics, I first thought it was incredible that someone had an interest of finding the relationship between two random people walking down the street. But, then I thought, it was too much. I began to think about how crazy it is to get over 5,000 family members together for a family reunion. In this case, I do not think DTC is harming anyone, but I think there is a boundary line between your family and others. Everyone has a right to his or her own privacy. I don’t think Jacobs had the right intentions using the DTC services. The genetic testing services are available to the public, but primarily used to find out personal genetic sequencing for health purposes, such as mutated genes, serious diseases, and future lifestyle changes. Although using DTC for family history is important in health, these services should not be used to go beyond close family to the thousands of people that may have similar genetic makeup. After reading the stories of both articles, I do not agree that the public is ready for a personalized genomic revolution. Although positives include knowledge of genetic information, there is a good chance individuals can take that information too far.
The big question is who is to blame the outcomes of DTC genetic service users? I’m sure people have positive outcomes from receiving their genetic information when using the DTC services. It may be beneficial to find out at what risk one may contract a disease or it may be beneficial to simply know one’s genetic makeup. However, as we read in the second article, outcomes from DTC services, such as 23andme, can be negative. An unnamed biologist found out that his father had a half-brother from his father’s premarital affair after finding a genetic match on 23andme. Although this may be difficult information to absorb for the biologist, I do not think 23andme is to blame. Results can be harmful to an individual or the family, but the DTC companies are simply analyzing the genetic information. Those who are looking to find out more about family and distant relatives must consider the possible negatives of the results. The DTC companies are there for those who want to learn more and people who act upon the services should not blame the companies. It is the consumer’s responsibility to take the information whether positive or negative.
The recent commercialization of familial genetic testing is a polarizing issue in genomics today. Companies like 23andMe provide direct-to-consumer genetic testing that allows users to find people who have overlaps in their personal genetic code. This service is definitely interesting and can be used for familial and interpersonal gain. Finding long lost relatives, like AJ Jacobs quest to fill out his family tree, is made much easier through this technology. However, users can also find out information that they were better off not knowing, like in the case of the biologist who found out about his father’s premarital affair and his subsequent half sibling. This information eventual lead to the divorce of the biologist’s parents, a completely unforeseeable and tragic consequence of the search for knowledge.
ReplyDeleteI believe that we as a society are ready for this genomic revolution, but only if individuals are made fully aware of the potential consequences of seeking this information. Social media has made it easier than ever to stay hyper-connected with those around us, near and far, and because of that our society is used to the “oversharing” of information. Because the information that the companies provide is ultimately provided by the consumers (each consumer must agree to have their DNA tested and therefore are aware that they may match up to someone who they might not expect), the companies are not responsible for whatever negative things may be revealed by their matching. However, a very explicit disclaimer about the nature of the information that consumers may discover would be a worthy addition to the contract provided by the genetic testing company. DTC genetic testing companies may consider providing both positive and negative user stories on their websites as a caveat emptor to their users, despite what it effect it may have on their profits.
ReplyDeleteI believe that we as a society are ready for genomic revolution. The population has become more aware of the scientific community and the advances that they have made through out the years. I think personally we are ready because of the fact that it is available and presented to the public. The fact that the public knows what is their disposal it is going to be hard for them to keep away from it.
I think it is wrong to blame the consequences on the DTC companies. It shouldn’t be the problem of the source that is providing information, is doing its job correctly. If you receive bad news or a invalidated answer, how can the company be held responsible for your actions. We live in a day and age where doctors are asked for a second opinion. How can you rely on a company that gives you your relatives/ disease results by mail? Use the people and resources around you to validate your answers.
Personally the DTC companies on the positive end are provding a service for people to be able to personally find out about their genes that they might be extremely interested for. On the negative side it might give us the results that the public is not looking for. Also on the other end it might also cause a false positive. Every action that we make as humans is not perfect. Not all results will end in this result.
I completely agree with Nikki. As people become more interested in genes and the human connection, there will be continual research on how we are genetically connected to people in the world around us. It goes beyond direct-to-consumer companies, and into research itself. If you look at something like the Human Genome Project (http://www.genome.gov/12011238). It is not unreasonable to expect that project of this magnitude will eventually allow us to link the different genes discovered to individuals and use this information in our personal lives.
DeleteIt comes down to personal responsibility. A company cannot control or what is done with information they provide, just like the designer of a social network website can accurately predict if it will be used negatively or to cyberbully. As long as companies are responsible and required to provide accurate statistics on they credibility, sensitivity, specificity, and other such details with complete explanations of what those statistics mean, they have responsibly provided services. I think this information should definitely be delivered by a professional such as a genetic counselor, it will not change the fact that people will still seek this information. It is not necessarily the company's fault if people do not like what they find out.
As a society, we are ready for a genomic revolution. The problem is that the technology is not ready.
ReplyDeleteDespite all of the advances that have been made in the vast field of genetics, the complete genetic factors of many diseases are not fully known. We know some genetic factors -- but for the most part, it is unknown. Knowing that you are at risk for a certain disease is great in planning out how to live your life because maybe some environmental factors could be reduced. However, the validity of some genetic screenings are questionable simply because we do not know enough.
If a person uses results from a DTC company to change something such as diet to prevent disease that should be fine. But if someone who does not understand that these results are not a crystal ball into the future sees these results, they may do something drastic -- case in point Angelina Jolie's preemptive masectomy. Would the DTC companies be to blame for these naive drastic measures? Not necessarily. They are providing a service and it is up to the consumer to be aware of the pros and cons of the services. However, with something as new as genetic testing, most people are not well versed in genetics and some would not be able to interpret their results nor understand that these results may very well be invalid. There should be more of a disclaimer on the DTC companies' part.
These aren't the stories DTC companies advertise, though. In fact -- they can't since the FDA made it illegal for them to share health information. What DTC focuses on is its more sentimental aspect -- finding family members and distant cousins you may not have known about. That is just fine, finding close family members tends to be fairly valid and learning that you are distantly related to Barak Obama as in the first article could hardly be harmful.
The second article, however does assert that DTC companies could indirectly cause familial tensions, such as divorce from learning of a love child. But DTC companies should not be to blamed for these tensions. Just as one may be able to learn of a significant other's secret lover through a site like Facebook, but Facebook is not at fault. DTC companies do provide a lot of information to the consumer, the consumer chose to find matches and knew that there could be some negative effects from learning these results.
DTC companies do not directly influence a person's actions -- they are simply a source of information. That information may be flawed, but it is up to the companies to warn customers of the low validity of some tests and that the actions taken after learning your result should be done with some discretion.
In reading both the CNN article and the 23andMe article, I found an interesting parallel. While the CNN article discusses A.J. Jacobs' large family tree project in what is clearly meant to be a positive light, it still highlights the point that it is strange to find out how many people around you that you are related to. Similarly, in the 23andMe article is clearly meant to paint these direct-to-consumer options in a negative light, but continually highlights how the information you find out can have negative consequences. The one point that is never discussed, however, is that no one forced these people to find out their genetic connections.
ReplyDeleteThe direct-to-consumer websites are a business like any other. They provide a service, and people choose to utilize it. No one is forced to learn more about their genetic information or connections. Genetic information is certainly sensitive, and I feel that the real problem is not the websites but education. I think that people do not fully understand that when they seek their genetic information, and do not fully prepare themselves for the potential that they will receive negative information. Obviously, this is why people typically get genetic tests done by a physician and have results delivered by a genetic counselor. Regardless, I think that sole responsibility falls on those who request their genetic information, not the companies that provide it. Many people are interested to find out their various connections, such as celebrities like Daniel Radcliffe in the CNN article. Others find out devastating news like the man who discovered he had a half-brother in the 23andMe article. People react differently, and I think there should be more of a focus on teaching people what to expect, and fully educating them on what information tests can provide and how reliable that information is.
I think whether society is “ready” for the genomic revolution that is currently underway is more or less irrelevant. The fact that sites such as 23andme.com were created simply means that people need to take responsibility for their involvement and accept the repercussions. Although unfortunate, 23andme did not force the husband to have an affair, lie about it, go through genetic testing to expose his affair, and then have a divorce. These are all actions and results that occur daily because of choice. While the consequences aren’t always pretty, they are consequences of personal choice.
ReplyDeleteThe real questions arise when discussing the validity and accuracy of the genetic tests as well as the regulations in place to protect individuals from possible discrimination resulting from the test outcomes. I think that many people (myself included) lack the knowledge to fully comprehend the results of genetic tests and the implications they may have for the future. I think it would be wise to have a genetic counselor available for questions during any kind of genetic testing, but it is ultimately up to the consumer whether or not they wish to pursue that. A misread test is not the responsibility of the testing company, whereas the accuracy of the test itself is. I think the entire DTC market would benefit greatly from standardized procedures and regulated labs.
The idea of a “global family reunion” sounds like a waste of time to me. As adoption, surrogacy, and blended families have all proven, family can be defined in a lot of ways that don’t include being genetically related. I think that genetic testing should be primarily used for health related diagnosis and treatment, not to break world records.
While having genetic testing available and accessible to society is great, I agree with Tess in that the validity and accuracy of genetic tests are more important aspects to consider. Policymakers should primarily set guidelines in terms of consistency of methods and techniques in genetic testing, as this could eliminate how different companies come up with varied results. I think that some sort of standard needs to be established. Genetic test results lead to decision-making; if a person is given incorrect information, then they can cause serious damage to their health and future life. Not everyone possesses knowledge of medicine and genetics, and they will not necessarily question the reasoning or explanation behind a genetic testing company’s conclusion. To avoid misreading or misinterpreting tests, consultation and follow-up with a genetic counselor or physician should be required to go along with genetic testing.
DeleteI concur with Tess that genetic testing should be used for health related diagnoses and treatment, and not “to break world records”. Like I stated in my other post in response to the CNN article, I think that A.J. Jacobs is merely conducting an interesting social experiment. It does not seem fair that people who actually need genetic testing for health reasons are unable to access it due to financial reasons. Perhaps this leads into a conversation about insurance companies providing coverage for genetic testing, or rather, having health care providers help transition genetic testing into the norm of care. Not only are people not aware of the benefits of genetic testing, it may be something that they are hesitant to approach on their own.
As time goes on, more and more technology advances are made. These innovations are intended to enhance our lives, but some can cause harm rather than good. I do not think that we as society are ready for this personalized genomic revolution. The only aspect that I find beneficial of direct-to-consumer genetic testing companies such as 23andMe is that they are widely accessible and available (despite the financial cost). While I think it is quite interesting that people can learn about their genetic family history, I think that people can become overly eager and excited when it comes to new inventions, and they can forget to keep in mind the risks and potential consequences.
ReplyDeleteIn response to the CNN article, I admire A.J. Jacobs’ optimism to bring people together as one big family. It’s an interesting social experiment, but I think that his utilization of genetic testing is merely just that. To be completely honest, I don’t think that most people would bond with their 14th cousins and spend Thanksgiving dinner with them. In response to the Entrepreneur article, I think that the stories about how 23andMe causing a divorce and reuniting long-lost siblings are extreme and rare. They are great for marketing, but not applicable to the majority. I don’t think that DTC companies are to blame for the consequences of genetic testing. My outlook is that genetic testing should be left to trusted, professional physicians and genetic counselors, who can personally interact, consult, and follow up with patients in order to educate them and help them make more well-informed decisions. Having an actual person explain and discuss the risks and benefits is much more helpful than skimming through a lengthy text agreement without fully processing the information being presented. In this way, doctors and genetic counselors can also help remind consumers of their personal responsibility. I really think that timing is crucial - while we appreciate speed and efficiency, I think that something like genetic testing, which could create serious changes in health and in life, needs to be taken seriously by thinking about it longer than the several minutes it would take to process a genetic testing kit purchase order online.
Society is not ready for this personalized genomic revolution. However, the chance of being very distantly related to even a somewhat famous celebrity makes society yearn for the genomic information. Inevitably, when the person who swabbed their cheek realizes that they married their long lost sister instead of the sister of an A-list celebrity, the DTC companies are the first to be blamed. This is not fair to the DTC companies because they simply retrieved the information. In the 23andMe article, the wife who divorced her husband from the information based on the test her son had them take was correctly mad at her husband. It was the husband who had an affair that produced another child, not 23andMe. The Entrepreneur article tries to paint a nice picture of one family finding that they are related to another family and both families are nice to each other now that they know they are related. In reality, why should these people only respect each other if they are related?
ReplyDeleteOne positive aspect of these tests is that it makes it easier to discover familial relationships. This is medically beneficial because if a man finds his biological father using these tests, he can now know what diseases he may be predisposed for, such as high blood pressure or hypertension.
One negative aspect, like the Entrepreneur article suggests, is that the results may not be favorable. These tests can expose children from affairs and other undesirable results.
I agree with the majority of Ryan’s opinions, especially regarding the responsibility of DTC companies. As individuals request and pay for their services, they should be obligated to provide the information as wholly as possible and with minimal risk of exposure. Patients should know that when they request these tests they are indeed putting themselves at risk of finding out unwanted data, which is of no fault of the company.
DeleteHowever, I do take issue with 23andMe’s willingness to put clients in touch with each other if they’re data overlap. Everyone has a right to the privacy of his or her own personal identity and health history, both of which are being compromised in the example Ryan provides of the father and son with high blood pressure.
It is unfair to blame DTC companies for simply providing a service. It is the consumer who is making the decision. The consumer must accept full responsibility for anything they should learn. It is, however, the companies’ responsibility to provide customers with all the facts. Before ordering DTC services, customers should have to sign a document saying they understand possible negative consequences of DTC services. In addition to providing happy stories, the company’s website should also include negative stories. They should paint the realistic image that not only good things result from DTC. Society should embrace DTC services, but should understand its full reality. One will be learning the whole truth. DTC companies did not make the scientist’s father cheat on his mother. It simply revealed the truth. Technology does not wait for the society that’s ready for it. Society must adjust to available technologies.
ReplyDeleteI think that you make a really good point about knowledge being powerful, especially in this day in age, and I completely agree. I think that the more that we know the better, more informed decisions we can make, and these type of genetic tests are just one way in which that can be done. I also agree that companies can't be blamed for complications that arise from the results of a voluntary test, they have no stake in ruining a marriage, and they didn't play a hand in any extramarital affairs. All in all, I agree with your point of view, and I think your insight was helpful to consider a different side of this discussion.
ReplyDeleteI do not think that the world is ready quite yet for this type of genomic revolution, although it is fun and exciting to watch unfold. A lot of the information that can, and will be learned by conducting these kinds of tests, people are not ready for. Finding out that you and the president are cousins, while cool and interesting, can prove detrimental to no only the person who sent in their DNA, but their unknowing cousins. On that note, I don’t think that we should be blaming these companies for the negative repercussions that people have to deal with. Sending in their DNA is a voluntary process, so it is difficult to place blame on the company in this type of situation.
ReplyDeleteThere are definitely good things that can come out of these DTC genetic tests. These types of tests are a great way to see where you came from and gain a better understanding of your family at a scientific level. Information is power in this day in age and these tests give people a lot of power. Personally, I have no desire to find out who my 12th cousin is, I have a good-sized family as is. Furthermore, these tests can give insight into unforeseen health problems. It can be daunting, but I would think that having this knowledge is better than not, especially for early detection.
Although there are a great deal of positives to these DTC tests, there are some negative aspects that people do not necessarily think of when ordering the tests. Take for instance the divorce that ultimately came from the DTC test from 23andMe. Submitting these tests can give light to unknown siblings or other relatives, which can cause great rifts in families. Although this is not the fault of the company, it is still something for which they are blamed, but people need to realize the consequences of these tests. Also having your DNA tested is easy, but the interpretation of the data is not, and sometimes people do not realize this. They spend the money and get the results back and have no clue what they are looking at, so that in and of itself is a problem. Again, this is not the fault of the company; they are just doing their jobs. I think that it is important for these stories to come out, how else will the public listen an realize that these are real possible outcomes when taking part in these tests.
While I personally don’t feel like we are ready for the consequences of what DTC genomic testing offers, I do believe that as individuals we should have the privilege to find out more about our genome if we so choose. While it makes sense that people who know they or their children are at risk for certain genetic diseases would seek out more information about their genome, this process is usually done with the guidance of a genetic counselor or physician. By putting this information directly in the hands of the consumers, there is a risk that individuals could misinterpret the information and then subsequently make rash or exaggerated decisions. However, the discovery of this information cannot be blamed on the companies as it was the consumer who went seeking it out to begin with.
ReplyDeleteUltimately I see more potential utility coming from the DTC sites than I do from the family tree planners. The ever-increasing family tree seems to be more of a novelty, a fun hobby for people to explore their heritage and reconnect with relatives. By contrast, DTC genetic testing, although they can be incorrect and are open to misinterpretation, provide a real window into how individuals can modify their lifestyles and better plan for the future. And of course, if people aren’t interested in these services than there is no obligation to participate.
More than this though, I believe that the biggest issue with these sites, both with the extensive family trees and with genetic testing, are flaws in the privacy and confidentiality. Yes, people ought to have a right to figure out who they are related to, but that information ought to be kept private out of respect for the potential genetic landmines that lurk in people’s genes AND family trees. At present time, there are not many measures in place to keep the information within its means. A main problem with the family tree websites is that all the information is shared because it’s pooled from the collective group “family”. Neither article mentioned any specific lawsuits against either company, but I wouldn’t be surprised if there were to be some in the future from detrimental information being spread. At this point, I feel that if consumers look to engage in either type of DTC website, they should be aware that they are running a risk of finding out unpleasant information about either themselves or their relatives.
Although I do agree with my peers that society at large is not ready to accept the type of genetic information available through DTC genetic testing, I do not think the DTC companies are at fault for any negative consequences that may arise due to results of the testing. In our capitalist economy, it is natural that when new technology is developed, private companies will want to market it to consumers. DTC companies should not be penalized for creating an industry out of advances in genetic testing. Additionally, there are benefits that can come out of DTC genetic testing, such as if a treatable disease is detected early, or even an untreatable disease so that a person can prepare.
ReplyDeleteThe situation discussed in the Entrepreneur article about a divorce caused by a DTC genetic test is a ver rare case, and should not be held against 23andme. It is unfortunate that that family had to go through such a hard time as a result of the rest, but the real reason for the divorce lies in the hands of the people themselves, not the genetic test.
I found the CNN article about building a gigantic family tree quite amusing. In my opinion, that seems like a fun way to use genetic testing, which shouldn't make any huge impact on someone's life, positive or negative.
As I stated earlier, I think the majority of society isn't ready for the information that could unfold from DTC testing. However, I do believe that when the process becomes more standard and common in the future, people will begin to see the benefits of genetic testing.
As a society we are not ready for this personalized genetic revolution, but we should be. As a society we should be keeping up this technology because the opportunity it grants us is so great. We need to keep an open mind as a society and utilize the resources available to us. Genetic testing gives us the ability to learn many things about ourselves and as a population. By learning more about our genome and any genetic predispositions we may have we can in turn get early treatment and screening. Even though many people have reservations about finding out something negative about themselves, it can have benefits. For example, the BRCA 1 gene polymorphism runs in my family and causes a predisposition to Breast cancer and other cancers. I got the genetic test for this in order to make a plan with my doctor about possible preventative measures and additional screenings. Fortunately, I was negative, but if I was positive, genetic testing would give me a chance to take preventative measures early. Therefore, even though society is not ready to for a personal genetic revolution it is important to keep and open mind and it could really benefit society.
ReplyDeleteAs listed above, by doing genetic testing it is possible to finding out something negative about yourself. This was seen in both of the articles. In the first article, the author found out he had an illegitimate brother which ultimately broke up his parents marriage. And in the second story the author figures out that Obama was related to a senator who he disagrees with. He also found out he is related to his wife. When people find out these things they may be angry and want to blame the DTC organization they used, like 23andme. However, these organizations are selling a product. And as a consumer it is important to know what you are buying and using, and what you are getting yourself into. Which leads me to the next point, the consumer must assume all responsibility when using this product. The consumer may be reminded of this because it is an electoral process and not mandatory in anyway. However, even when finding out something negative it can be beneficial in treating early, as stated above.
Genetic sequencing has come a long way since it started and even though it is a relatively new science it is very accurate. This is one of the pros of using it. Another pro is that DTC sites are cost and time effective, this was not always the case. Another pro would be finding out people you are related to if this is a desire. Conversely, a con would be finding out you are related to someone when you do not wish to know this, like in the case of the first article. Another con is that these tests are not 100% accurate, although they are very accurate, of course it is not 100%. Another con would be finding out something unfavorable out about yourself. while this can be good in getting early treatment, what if prevention and treatment are not available? Although this is not a positive thing it is a risk the consumer must accept when taking the tests.
Overall, society is not ready for a personal genetic revolution, but it should be. This is technology that is available to us and it should be utilized. We must learn to keep and open mind and take advantage of what we have access to .
Genetics and family lineages are very interesting and, of course, can be extremely complicated. It seems obvious to me that the deeper you delve and the further down a line you go, the more possibilities you have of encountering an "awkward" genetic relationship. Though this is something that consumers must understand. While there are many benefits to this sort of service, genetic testing reveals the truth, whether or not it is a desirable truth. Everyone may be related somehow, but it is up to you to decide what you consider is a real and accurate description of a relationship. There are endless possibilities of to whom you can be related. Personally, I would not consider, for example, a 10th cousin to be my close relative. It is not fair to blame the companies for the results that may cause discomfort. They are simply doing what you asked by providing you with information, and it is your responsibility to interpret it as you wish. That being said, I think that these genetic tests should remain available, but consumers should be warned and aware of both positive and negative outcomes.
ReplyDeleteThere are clearly many issues when the question of direct-to-consumer (DTC) genetic testing comes up. The main question is, are we as a society ready for the possibilities that arise from having this service. In short, yes, I think we are. But it’s up to society to stand up to the challenge. Because of the immense implications of a venture like this, there is a possibility for both good and bad consequences. I believe the world has the capacity to stand up to the challenge and seize the opportunity that’s in front of them.
ReplyDeleteIn the article, “President Obama is Sen. Ted Cruz’s cousin! Really!” DTC genetic testing has proven to show the world the possibility of a brighter, happier future; a future where people can come together in celebration at being distant relatives. This genetic testing has thus far done nothing but bring joy to the participants. The issue that may come up with something like this is, what is really considered family? Yes, Barack Obama may be related to Ted Cruz, bringing in some irony to the their distinctly different political views, but the fact remains that I doubt either of them would go so far as to call each other family members. By creating these connections with genetic testing, people aren’t trying to create family connections but to give the world another avenue for relating to each other. So not only is this the world ready for DTC genetic testing, but I think it is something that the world can use on the way to making things just a little bit happier and a little more peaceful.
In the second article, “How 23andMe Caused a Divorce: A Look at Unintended Consequences,” there were some unfortunate circumstances in which a previously buried truth was revealed. However in this situation can one really blame DTC for uncovering the truth? Or in the end is it really the father’s fault for keeping the secret in the first place? DTC is a product that may have consequences the users were not expecting. But this is simply a danger of the product, in the same way that a kitchen knife may fall out of someone’s hand and cut him or her. Saying the world isn’t ready for a product simply because it has some possible negative effects is incredibly limiting on the technological front, and is not how society has come to where it is today nor how it will continue to grow into the future.
You mention that we can't weigh the choices of genetic testing because we don't understand the consequences in full, but how can we ever know the consequences unless we try. Planes have been used for some of the worst tragedies in human history, such as Hiroshima. But at the same time they have connected the world in vast and amazing ways. So do you think the Wright brothers should never have taken that first flight? And the DTC companies should be partly to blame, but just as much to blame as the microwave companies for not saying that one shouldn't put an animal in the microwave when a woman tried to dry her cat off in one (bye bye kitty). There is a service that is available and has the potential for great good. I think it is largely up to the population to realize how it should be used, not the companies
ReplyDeleteFirst of all, the advancement of genetic testing has many positive outcomes. Genetic testing can be used in the medical world to study a person’s genome to see whether that individual has the particular gene or sequence of genes that could either predispose someone to or cause an unfavorable medical condition. This mode of early detection can be vital in early treatment or preparation for a particular condition or disease, such as Alzheimer’s. Genetic testing can also be used by prospective parents to determine if the risk of them passing a condition on to their children. Furthermore, genetic testing can be used to determine who an individual is a relative of and what the specific relation is. Genetic testing is quickly becoming more and more available to interested consumers of the general public.
ReplyDeleteYet, having said that, I do not believe society is ready for this personalized genomic revolution. While genetic testing has its benefits, it can have some major drawbacks. In the CNN article, the man interviewed is excited about working to generate a world record breaking family tree. Some people may share his view, although not to that extreme, and wish to seek out their relatives through a more reasonably sized family tree. However, not everyone feels this way, and there have been many cases where people who have participated in genetic testing have a negative outcome. A few examples are discussed in the 23andme article, such as the story of a biologist who discovered that he had a half-brother. The problem was that this half-brother was from a pre-marital affair that his father had, and this led to his parents’ divorce. Obviously, results like this are highly unfavorable. On a different note, many people do not wish to know their possibility of having a disease or other condition in the future. Many would rather not know than to know and worry about it in anticipation for years. Ultimately, I think this level of personalized genetic testing has too many possible negative effects on society to consider our society ready for this scientific advancement.
Regarding the DTC companies that perform this testing, I do not believe there is any direct blame that should fall on them. If people come to them asking for genetic testing to be done, then that is the choice of the people getting tested. Moreover, if the genetic testing produces negative results, this is absolutely not the company’s fault, they are merely the messenger. The issue of government regulations may concern some people, but, again, this is not the company’s fault. If the government wants to implement specific regulations, it is up to the government to put these regulations in place. As long as the DTC companies are not doing anything against the customers’ wishes or breaking any laws, I do not believe that any blame should fall on them regarding any fallout after the testing.
Direct-to-consumer genetic testing companies such as 23andme have provided individuals the opportunity to learn about their genetic family history.
ReplyDeleteRead these two articles. Are we (society) ready for this personalized genomic revolution? What are your thoughts on blaming the consequences on the DTC companies? How do we remind consumer of personal responsibility? Support your post by discussing the positive and negative aspects of using these types of DTC genetic service
Whether or not one agrees with genetic testing, how its conducted and the consequences, one thing for sure is that it is advancing and will be more prevalent in society, shaping our lives.
I think as a society we should be ready to for genetic testing. It can bring lots of benefits to humans and make our lives more beneficial. It can give us insight into our past about things we never would have known otherwise, such as for Kelly Wallace, author of "President Obama is Sen. Ted Cruz's cousin! Really!" Wallace commented she wanted to know add to her family tee, which genetic testing helped her to do. Personally, I have always been fascinated by the idea of family trees and who I may be related to. At 10 years old, I did research and found out my great-great grandfather was friends with Mahatma Gandhi, started the first South Indian English newspaper and was an Indian freedom fighter. Genetic testing can add something to your life you never would have had otherwise. It can also give one insight into medical history, which can help improve one's health and even save lives. As a society I believe we should be ready, but there can be consequences for how people deal with this information. In the article "How 23andMe Caused a Divorce: A Look at Unintended Consequences" by Okyle, the unnamed biologist and his family had their lives devastated by the information they learned about an unknown family member. Learning you have a chance to get a deadly disease is another example of how people may not react to such information in the best light. It can be hard to deal with what the genetic testing reveals, but ultimately it will be eye-opening and bring a lot more into your life.
I do not think the consequences should not be blamed on the DTC companies. It’s the people who asked for the information, the DTC companies were only doing their jobs. In the case of the biologist, 23andme should not be blamed for his parents’ divorce. It is essentially getting mad at someone for telling you the truth. However, if on the other hand the DTC company made a mistake, by all means they should be held accountable. Otherwise one cannot blame the company for doing what they are supposed to do.
It is definitely hard to to remind consumers about personal responsibility. It can be hard to deal with negative consequences of genetic testing as explained before. One way to remind consumers is a explicit disclaimer that the DTC companies are not responsible for any consequence and they are simply making information available. Another way is to spread awareness. If the topic of DTC testing, its consequences and even stories such as the unnamed biologist were put on television and talk shows, the issue of personal responsibility and what impacts the testing could have would be better known to people.
I think DTC testing can have positive and negative attributes, but for sure it can make a large impact overall. I believe DTC testing can give us information we would not have known before and improve our lives overall. I certainly plan on doing genetic testing at some point in my life and I hope others do too.
While I do agree with some of my peers that society at large may not be ready to accept the type of genetic information available through DTC genetic testing, I do not think the DTC companies are to blame for any negative consequences that may arise test results. A consumer, for any product, makes a decision to purchase that product and must deal with any consequences. This is true in regards to purchasing fast food. Recently, there has been a lot of debate about who is to blame. Is McDonalds at fault for the obesity epidemic? Is 23 and Me really responsible for a divorce?
ReplyDeleteIn our society there is a growing trend to blame big corporations for unwanted side effects of purchasing products. The article about the divorce stemming from a genetic test purchased from 23 and Me is a unique look on potential negatives of ordering genetic tests. The real reason for the divorce is a husband cheating on a wife and subsequently lying about it for years.
Submitting genetic tests can give light to unknown siblings or other relatives, which can cause great rifts in families. Although this is not the fault of the company, it is still something for which they are blamed. Consumers have an obligation to deal with unwanted consequences whether they anticipated them or not.
I found the CNN article about building a worldwide family tree quite futile. It is amusing and in my opinion, it seems like a fun way to use genetic testing. It also shouldn't make any huge impact on someone's life, positive or negative because the majority of the public knows they have distant relatives somewhere. While nothing relevant to science may come from this quest it is an interesting look on what can be done with genetics.
DTC companies should not be penalized for creating an industry out of advances in genetic testing. In fact, it is human nature to capitalize on new advances and benefit from that. There are many benefits that can result from DTC genetic testing, such as if a high prevalence for a disease is detected early and people can make necessary lifestyle adjustments, or even an untreatable disease so that a person can prepare.
DTC companies are not to blame for family rifts or divorces but they may be to blame for other consequences like misinterpreting test results. While the companies probably have waivers and regulations protecting them I think it is irresponsible to provide genetic test information to people without requiring them to sit down with a credited genetic counselor to discuss the results. We touched on this in class but no one would want to read in an envelope that they had a moderately increased risk of acquiring ovarian cancer. This information can be wildly misinterpreted and cause dramatic negative consequences in individual’s lives.
I think the next steps for DTC company-consumer interaction is a universal testing system with results being coded in the same way. For example one company may say increased risk of Alzheimer’s while one may say greatly increased risk. This causes confusion between medical professionals who may not have access to greater information about tests used and company lingo.
Again, this is a new field and there will be many changes in the coming years. I think that it is important for these stories to come out, so the public will listen and realize that there are real possible negative outcomes when taking part in these tests. I am excited to see what will come in the future with genetic testing.
I agree with what Emily mentioned at the end: "you never think this kind of thing (like carrying the gene for Huntingdon’s Disease, or finding a long-lost sibling) would happen to you until it does"
ReplyDeletePeople carry this belief about every day events. For instance, people may not think they will get in a serious car accident and then they may one day. They do not live with fear it will happen.
With genetic testing people may not think long term about the consequences of finding out life altering information. Who is to say that knowing you will one day get huntington's disease is better than living peacefully and obliviously until you are diagnosed.
This is a huge debate and something we could discuss for hours. When people purchase genetic test they may not think about how life changing the results could be.
This may be an area of improvement for both consumer awareness and the companies approach to advertising and delivering news.
Direct-to-consumer (DTC) genetic testing companies such as 23andme are made so that people can learn more about their family history and about their own DNA. How they deal with that information is up to them, but I think that they should have the chance to make the choice. These two articles – “President Obama is Sen. Ted Cruz's cousin! Really!” and “How 23andMe Caused a Divorce: A Look at Unintended Consequences” – both represent two very different extreme consequences of DTC. However, I think that they are beneficial for the public to know. People need to realize that DTC can lead to serious negative effects, but on the other hand it can also be very positive, maybe even life-saving.
ReplyDeleteI think that we as a society are ready for this genomic revolution. Some might be skeptical at the thought, but this generation now more than ever is becoming more globalized. People are connecting with each other all around the world, even if mainly through social media. But it can’t be denied that everyone is becoming more interconnected and I think that the majority of people would be open to the prospect of genetic testing. Like anything else, DTC can be good or bad. All DTC genetic testing companies should offer a genetic counselor to help consumers interpret and understand their test results. Whether or not the consumer is happy or not with their results is not the companies’ fault, however companies really should outline the possible consequences before the test takes place.
ReplyDeleteI think that we as a society are ready for this personalized genomic revolution, however we must first educate society so that they know what they are getting themselves into. I think that the genomic revolution is somewhat daunting; there is a lot of information being thrown at individuals, most of whom are foreign to many health concerns and even health-related lingo. I also think that we must use the personalized genomic revolution as a way to better our preventative measures and improve healthcare as a whole. I think that society also really wants to become aware of their ancestry, especially since the majority of our population is completely unaware about their predecessors. When I read the article written by Kelly Wallace I was somewhat concerned about some of the comments that were brought up. The idea that people are getting excited about the fact that they are “related” to celebrities is sort of delineating from the main point of what these genome projects are for. I think that in society today many people will become almost distracted by that aspect of this revolution opposed to the impact it will have on the healthcare system.
I think that blaming the consequences of genetic testing on the DTC companies is simply unfair. Their only obligation to consumers is to provide them with the information about what the test does and how it works and to get the lab work done. What happens with the test results I think it completely out of their control and therefore does not deserve any sort of blame. In the article, “How 23andMe Caused a Divorce: A Look at Unintended Consequences,” it states that the unnamed biologist “checked a box saying he’d like to be notified,” therefore I think it is clear that it was this biologist’s fault himself- because in a sense, he asked for it. I think that people need to be aware of the consequences that these genetic tests produce and become completely comfortable with themselves and comfortable with the potential information that he or she is about to receive.
I honestly think that reminding consumers of personal responsibility is tougher than it seems. This is mainly because DTC genetic testing company consumers are mainly older people who are, mature, employed, wise, and knowledgeable about the results of most of their actions. I think that the problem with lack of personal responsibility with the consumer is a negative aspect of these types of DTC genetic services. I think that it is difficult to generalize any findings in these services, and thus it is difficult to prepare the consumer about the information and findings from these tests. We must remind our consumer before agreeing to undergo these tests that the information is “heavy” and has large impacts on not only the consumer as the individual but on distant family members. Therefore, a consumer that chooses to do this test needs to take full responsibility because it is not an individual project and it affects more than the person that is physically taking the test.