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 think Catie brings up an interesting point about the difference between using DTC genetic tests to actually uncover genetically related disorders and other potential medical issues versus trying to family members. Especially when an individual is just trying to locate all other biological family members (rather than searching for one or a few specific relatives), it seems like there is not much utility in allocating genetic testing resources for that purpose just because he/she can pay for the test. Since news stories-- especially those surrounding subjects like genetic testing --tend to operate on extreme examples and sensationalism, it might be useful to conduct a thorough case study or utilization review of DTC genetic tests to determine how often such tests are being used for things like identifying disease markers and searching for closely relatives who are difficult to track down, in comparison to how often DTC genetic tests are used just to sate the unfocused curiosity of clients who are able to pay.
DeleteI strongly agree with the points that Catie made in regards to these articles. I particularly like this idea of family is more about quality rather than quantity. I think that people lose the meaning of family as they begin to search for purely genetic connections to one another. Family is much more than sharing DNA make up. I'm adopted and if someone told me that I'm not actually considered family to my mom because I don't share the same genetic make up, I would just laugh in their face. (And meanwhile the man in the CNN video is related to H.Clinton..?)
DeleteIn response to the question about whether society is ready for a personalized genomic revolution, I don't think that we are. As both of these articles seem to imply is that people are using these tools more to grow their family trees and not for more serious purposes such as discovering disease or other disorders that could affect them. If people were actually educated about what they could discover using these tools I think this revolution could be taken in a whole new direction that would provide a lot more purpose. This isn't to say that building a family tree isn't important, but as seen in the Entrepreneur article sometimes digging around without a purpose can lead to answers to things you never really wanted to know. It would be important that the companies provide information to their customers about what could be found using these tools.
But given the way that people are using these resources it's silly to think that people are getting angry with these companies for what they're discovering. Once again I think that DTC genetic services should provide information to people about what they're doing as well as possible outcomes that would result. Leaving the responsibility on the customer.
I agree with Catie's point about the responsibility aspect. It shouldn't be seen as the companies responsibility when the participant gets bad results. The company, after all, is a business. Businesses make money off of willing participants and buyers. It is the person who is participating to understand the potential consequences of the genetic search. However, is it the companies responsibility to give the participants warning of what could happen? Many of these companies advertise their tests as ways to find your relatives, find your heritage, find out who you are. But they don't reveal to you the potential outcomes- "find out you have a step-sibling, find out you have a disease," etc. Is it their responsibility to be more transparent about what the participants could find out?
DeleteI agree with Catie in that it seems the original purpose of these DTC companies has been lost in the excitement of the new found ability to find genetic connections between seemingly random people. The stories make for some great anecdotes, but the first article especially seems to be an example of an abuse of DTC resources. Anupriya also makes a great point – these genetic testing resources can be used to save lives, and it’s important to make the distinction when using a DTC between finding information that will benefit health, and searching for something that just seems cool. This is an especially important distinction to draw when considering the benefits that genetic testing could provide to lower income countries. Understanding one’s genetic makeup and risk level can be crucial for anyone, especially when it comes to lifestyle changes. It would seem to be a better use of genetic testing resources to provide testing in lower income communities than to make a hobby out of creating the largest, slightly subjective family tree.
DeleteI 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.
The question of whether society is “ready” for this personalized genomic revolution should be broken down into two distinct parts. First, do we have the protocols in place to establish unified testing guidelines, accurately interpret results, and somewhat uniformly negotiate potential ethical issues that may arise as a result of the findings of direct-to-consumer (DTC) genetic tests? Second, do we have the capacity—both as individuals and society as a whole —to appropriately respond to the findings of such tests? Laws like the Genetic Information Nondiscrimination Act of 2008 indicate that society is trying to lay the groundwork for appropriate use of DTC genetic testing. However, the lack of codified testing and interpretation infrastructure in the current DTC genetic testing landscape demonstrates that we still can’t truly claim that society is “ready” for this new realm of genomics.
ReplyDeleteBasic genetics—let alone the interpretation of complex genomic information and the potential consequences of having that knowledge–can be indecipherable to even highly educated individuals. For example, even the biologist from the Entrepreneur article who teaches genetics had no way of guessing that a DTC genetic test could uncover a secret half-sibling from his father’s premarital affair. Therefore, when individuals purchase DTC genetic tests they don’t fully understand, only to uncover shocking genetic markers or family histories, society’s first instinct is often to put the blame on the companies who made those tests available in the first place.
To an extent, this reaction is justified. DTC genetic testing companies undoubtedly have at least some staff members who are well-versed in genetics and the potential consequences of genetic testing, and they should be using those staff members to construct thorough websites and disclosure mechanisms so that potential purchasers are very clear about the potential beneficial and negative information that might be unearthed by the test. At the same time, DTC genetic tests are largely unregulated by and unaffiliated with the healthcare profession, so the companies lack the fiduciary and moral responsibilities related to the interpretation of genetic information, and focus more on their ability to compete against other testing companies for market shares.
For this reason, we also need more government participation in the regulation of DTC genetic tests, because companies will continue with their current practices until they are given clear legal mandates to provide users with access to licensed genetic counselors and other trained healthcare professionals to follow up on DTC genetic testing results, in addition to informing users of the potential negative information that might be uncovered by the test. When such guidelines are firmly in place and in widespread practice, then society will shift its focus back to the role of the consumer and his/her personal responsibility for purchasing the DTC genetic test in the first place. Therefore, even though society has the ability to appropriately use and respond to DTC genetic tests, government regulations and increased responsibility on the part of testing companies are required to create the infrastructure necessary to ensure that society can actually use DTC genetic tests responsibly in practice.
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.
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ReplyDeleteI am not sure if society is quite ready for the genomic revolution that we are currently experiencing.
ReplyDeleteThere are, no doubt, benefits to having at home genetic testing available to the public. This can allow people to find out more about the family history-who they are and where they came from- which many people are very interested in. Another benefit that comes from these tests are they finding of a genetic disease that, if unknown to the person, can allow them to take steps for proper treatment at early stages, rather than living without knowledge of what’s to come.
However, there are many disadvantages to having this kinds of tests, many of which are less obvious to the person. First, as seen in the article How 23andMe Caused a Divorce, the users of these take home tests found out information that they were not looking for: the test revealed an affair that the father had had many years prior. This was detrimental to this otherwise happy family. Another disadvantage is that the average person is not trained to read and interpret these tests- what if they interpret wrong? What consequences can come from that? Plus, inaccuracy of these tests could cause harmful effects on families, mental health, stress, etc. Finally, what if you find a disease that you did not want to find, and causes unnecessary anxiety and stress that way? All of these are consequences of taking at home genetic tests that need to be fully considered. Perhaps it is the responsibility of the companies to give a warning to those who order their tests, but ultimately it is the person ordering to understand the possible consequences of the tests.
On Wallace’s article on family tree, I am not sure the benefit of creating a family tree with everyone on it. I do understand from a world peace perspective, how it would be interesting to show that everyone is connected somehow, and that could give people more perspective and potentially decrease discrimination or racism. However, although we all are connected, I do think there is a difference between genetically related and family. Family to me is the people I grew up with, learned from, watched grow, have been there for me, who have been close to me my whole life. I don’t fully know the full benefit of showing that we are all connected beyond that.
The original purpose of DTC, to provide individuals with information pertinent to their health, was lost in this first article. Connecting thousands of random people sounds frivolous, and mildly unnecessary – especially when medical and genetic testing resources are not exactly abundant across the world.
ReplyDeleteIn terms of implications, it doesn’t sound like it really changes anything. Yes, there is some merit to knowing where your family came from, but this takes this further than most find necessary. It becomes less about where your family came from, and more about how you are genetically connected to the rest of the world. The information the AJ Jacobs is trying to find will give little, if any, pertinent genetic information that could save someone’s life.
The story featured in the second article certainly raises concern with arbitrarily testing one’s genetic makeup, and connected with others with similar results. Again, meeting other people with a similar genetic makeup was not exactly the original purpose of DTC testing, and it certainly presents some concern regarding privacy issues, but any personal problems that result from testing can’t be blamed on the company. However, if the DTC company is storing genetic information, and offering the connection service featured here, it presents issues with who is seeing the information, and possible mistakes made in which incorrect or unwanted information is given. It’s very important for the consumer to understand the risks that come with understanding one’s genetic makeup, and it’s relation to that of other’s. 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.
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"
DeletePeople 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.
As 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.
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DeleteThe article about everyone being practically related to everyone and that everyone sums up to “one big family,” is very subjective to the meaning of family. In my perspective, family is the group of people who love, care and are loyal to you; they’re the people who have influenced your life and they’ve shared their life with you and vice versa. The perspective of AJ Jacobs seems to be that the fact that we all came from the same common ancestor is what makes us, and thousands of strangers that we don’t know, “family.” He’s right though, that we all come from the same common ancestor; it’s a biological principle that humans, plants, dogs, and cats all share such ancestor and it’s known that we share many of the same genes. This to me makes us related, not so much family. His project of creating an enormous family tree is quite interesting to me despite his very strange way of viewing family. I’m not sure of the potential benefit that it has for any scientific research or possible newfound knowledge at all, but if it brings society benefit then I would support it.
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ReplyDeleteAfter reading these two articles and some of the comments, I’m going to have to go on the opposing side of most of the class.
ReplyDeleteInformation is power. Whether it is banning books based on their content or these DTC companies, I don’t believe we as a society have the right to limit other’s right to learn. In my opinion, intellectual freedom shouldn’t be controlled and people should be allowed to learn what they want.
Back to these two articles, I don’t believe the divorce outcome should be blamed on the DTC. It is not the company’s fault that a husband had an extramarital affair, nor is it their fault that it produced a lovechild. The breaking up of a family is tragic, but who is to blame for the husband’s unfaithfulness other than himself? I really agree with what Okyle said towards the end of her article “To be fair, 23andMe isn’t the only company to have its products or services used in a way other than its intended purpose.” This statement couldn’t be further from the truth, yet we scrutinize genetic testing companies like 23andMe. This is most likely because our genetics are so personal, and literally are what makes us who we are. That being said, a company can’t be blamed for its consumer’s actions.
However, I do believe that because genetics are so personal and that outcomes of finding out your relatives can be potentially devastating, that 23andMe must do a better job of letting their clients know both the potential harm that could come along with the benefits of their product.
Personally, I don’t feel the need to find my our my entire extended family because I am pretty happy with my family now. I think it would be cool to trace my lineage, but I don’t think I could feel familial love for 5,000 people. If my 12th cousin had reached out to me, I’m sure I would be friendly and open to it but I wouldn’t be dying to know who all my 14th cousins twice-removed are. Again though, that is my decision and it might be fascinating to people who do not have a strong family connection or who may have been adopted or do not know where they came from. This article felt a lot more positive—it is comforting knowing we are all just one big family.
In my opinion, the most negative impacts from genetic testing were not discussed in these articles. I believe that companies giving out health information are much riskier than familial. Again, I believe that these should not be limited but that a genetic counselor should be provided with your purchase because of the interpretation and potentially life changing information you could receive about your health.
I 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.
DeleteI 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.
Deoxyribose nucleic acid (DNA) has a simple molecular structure but contains complex ‘codes’ for creating an organism. It stores heritable information, as well as the blueprints for life. With the onset of personalized genetic testing, several ethical ideals emerge. First, is society really ready for this advancement? Ideally, it is a great tool to learn about susceptibility, as well as interpersonal relationships amongst ancestors. Relatively affordable, in home genetic testing provides consumers with the resources to better understand their past and future. However, is the truth really worth knowing? In the article featured on Entrepreneur, it is clearly not. The result of testing led to the discovery of an illegitimate child, which eventually led to a divorce amongst the parents. However, the blame is not on the companies that offer in-home genetic testing. It is a voluntary service that for the most part is primarily concerned with attaining a vast database of genetic knowledge. Whether the truth is desired or not is contingent upon the beliefs of the consumer. It is their personal responsibility to ensure that all knowledge gained is welcomed openly. Any doubts should result in the dismissal of the in-home service. There are always cons and pros to any service, especially one that is relatively new and radical. For example, the benefits of genetic testing allowed for the creation of a large ‘family’ reunion. On the other hand, it led to a terrible divorce.
ReplyDeleteThe 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.
I agree and disagree with Tess. I believe society is still not ready for the genomic revolution because of the lack of regulations and genetic counseling available at the moment. People can also have their DNA taken against their will or are coerced into providing it, and they may not may not have wanted this test in the first place.
DeleteHowever, I agree that DTC tests themselves do not directly cause problems, like the divorce. It is the consumer's responsibility here, because they sought out the test. If they are not ready for or cannot handle the information, they should not have gotten the test in the first place. For example, if you are not ready to drive a car, you should not drive a car. If you do so anyway, and get into an accident it is not the car company's fault, it is the driver's fault and he/she has to come to terms with the fact they made the decision against their better judgment and have to deal with the repercussions. DTC tests are like any other product - one should do some research to understand what is going on and use good judgment before engaging in something relatively major, and if they do not they have to deal with the consequences.
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.
In all honesty, I do not think society is ready for this kind of personalized genomic revolution. While I acknowledge that technology is constantly changing, that does not always meaning that we as people are changing at the same rate. As a society we do not understand fully what these types of genetic testing are or what they mean. This exact point was demonstrated in the 23andMe article. The biologist could only see the good that could potentially result from having the genetic test done; he did not plan for the worst case the scenario. No one ever wants to think of the negative aspects of a new and exciting technology. But how can we weigh the choice of having a genetic test done when we do not even understand its consequences in full?
ReplyDeleteI think that the DTC companies are partly to blame for these negative consequences. They are responsible and therefore have a duty to their customers to disclose all the risks of obtaining a genetic test, even the obscure consequences as mentioned above. But the bottom line is that these consequences are possible, and therefore should be thought about beforehand. Genetic testing is an amazingly accurate and useful tool, that can help save many lives in the future. In the CNN article, Al Jacobs has made great process in showing that through genetic testing, virtually everyone is connected to one another by their genes. On a smaller scale, this type of connectedness can help family members track down disease risks and patterns from extended families members all over the world, which further illustrates how this type of technologies can further save lives.
Overall, I think that genetic testing in and of itself is incredibility useful. However, I think that DTC companies need to be more aware of ALL the risks that accompany genetic testing. Once they can compile that information comprehensively, then it is also up to them to relay these risks to consumers since they are providing the service. Consumers, in return, must be acknowledge these risks as well as seek proper counseling in order to read the test results. In the end, it's the consumer who is making the conscious decision to take the test, and they should complete information about the risks and benefits.
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
DeleteI believe we as a society are not ready for this personalized genomic revolution because at the moment it seems as though there are not enough regulations in place to monitor it. Companies could be providing untrue, but interesting information to try to hook customers to pay. Furthermore, even if the information is true once it is obtained the average person may not fully understand and appreciate the results of the test. Many of these DTC services do not provide genetic counseling or resources to interpret the information, and therefore it can be easily misunderstood. A.J. Jacobs from the CNN article believes that it will help people understand that they are “one big family”, and that he is “very inclusive”, but this could leave room for an acceptance of erroneous data in an attempt to prove that we are all linked. Also, many people who are part of these tests may be reluctant to take them and are encouraged by friends or family members. Some people may have their DNA obtained without their permission and added to this giant family tree or subject to these tests without their permission. According to the Entrepreneur article, DTC tests can expose skeletons in the closet, for example, out of wedlock children, revealing affairs, etc. It can cause problems in life and relationships that those seeking the test, or those reluctant to take the test, may not be ready to handle.
ReplyDeleteHowever, there are some positive aspects to these tests. They may be able to identify diseases in your family, help you find long lost relatives, or could help you see if you are related to your significant other before you decide to get married and/or have children. While the latter may be uncomfortable to find out, it is overall beneficial. These tests are also fun as a curiosity – it is interesting to believe, no matter how distant, that you are related to a celebrity or the president. It also helps redefine the idea of family, and expands your circle. It can help those who do not have immediate family to find others they can feel connected to, and for example, spend the holidays with the people they discovered they were related to rather than be alone.
We cannot blame the consequences on the DTC companies because many people who find out information they did not want to know were the ones consulting the companies in the first place. To follow an old saying, you can’t shoot the messenger. Just because they provide the information does not mean they are the ones at fault. However, the companies should provide a disclaimer saying that information revealed may not be 100% accurate or may be uncomfortable for some customers.
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.
Genetics is a very sensitive topic to discuss as evidenced by the two articles. It can reveal awkward affairs that occurred before marriage, and reveal that a married couple is genetically related as distant cousins as well. Certain religions can cause people to question whether all people are related genetically or not because of the story of Adam and Eve being the first two humans created as well. Genetic websites have been offering genetic testing and have begun to introduce these questions I have mentioned. If companies want to sell products that will reveal genetic relationships that is fine but consumers need to realize that they need to question the validity of the tests periodically and whether the information entered was accurate enough to validate the results. Based on what I have written about genetic testing, when the CNN article says that a reporter is partially related to the President may be a stretch and might need to be double checked to see if that is actually true.
ReplyDeleteIt 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 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.
First 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.
Overall, both articles illustrate a need for a better understanding of how DTC genetic services should be used. Information gained from DTC genetic testing should be applied in a certain way. I believe that DTC companies have good intentions and do not want to cause trouble within families. It is the responsibility of the consumer who is using the DTC companies to use the information in the way they want. However, sometimes the outcome is not what they are looking for. Society is incredibly technologically advanced, and science is more advanced now then it has ever been before. Therefore, people who want to figure out whom they are related to have the ability to. We are ready for this personalized genomic revolution, but psychologically we should prepare ourselves more for the information we could receive. The CNN article discusses how society as a whole is capable of figuring out how we can all be related. AJ Jacobs explains his determination to find distant relatives in his hopes of having a the largest, “Global Family Reunion.” So far, he has figured out whom thousands of his relatives are. Although this may seem like an interesting activity, I do think that it is unnecessary to know every person you share a small piece of DNA with. Building an entire family tree of the world is not as easy and simple as it sounds, and although Jacobs is attempting to conquer the task, I think it will not be as thrilling to find out if you’re married to a distant cousin or not. I believe this is part of the negative outcome of using DTC services. The second article discusses how DTC services such as 23andMe can cause conflict among families. An example is the unfortunate man who found out his father had a love child. This caused a divorce. I do not think DTC genetic services are to blame for this; however, these problems can arise from it. Gaining genetic information is not always a positive outcome. However, an important positive outcome of DTC genetic services and testing is that it can reveal genetic disorders or future diseases. By gaining this information, a person can prevent the disease from occurring sometimes which is a good outcome of the DTC test. Society as a whole must be informed on how it is up to the consumer on what they do with the DTC companies results. It is the consumer’s responsibility on what actions to take after receiving their own genetic information, not the company even if it causes issues among a family.
ReplyDeleteDirect-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.
Genetic testing is an amazing new source of technology that could evidently change the world. As stated in the CNN article, DTC has allowed people access to their genetic history. With this knowledge, they can see who they are distantly related to -- even the President and famous celebrities! Like everything, there are positive and negative consequences alike. Going hand in hand with consumer personal responsibility, I believe every person has a right to know about their genetic history. However, they should also understand that not every consequence will be positive. The risk of not knowing how a piece of information could affect the rest of a person's life should also be expected. Thus, I don't believe DTC companies should be blamed for unwanted results since the consumer voluntarily goes into the process.
ReplyDeletePositive consequences of genetic testing could be reuniting with a long lost relative that was seemingly impossible to get in touch with. Another could be determining whether or not a person is at risk of contracting a genetic disease. Also, finding out the source of disease in order to find cures for another disease is possible with DTC. Although there are plenty of door-opening opportunities with genetic testing, there are also ethical implications that come with DTC. In the CNN article, a couple split apart after finding out about an unknown lovechild. The exposure of secrets such as this could lead to unfortunate fallouts of families, couples and friends. Another negative aspect of genetic testing is a person finding out about a disease they have, inevitably affecting their perspective on life since they're expecting the worst. Their quality of life could be diminished with this information.
Ultimately, I don't think society is quite ready for this genetic revolution. As Apple's technological expansion happened in just a decade, I feel the same will happen with genetic testing. Slowly, but surely, everyone will have access to this technology and will create a global revolution. Whether or not the negative consequences will outweigh the positive ones... it looks like we'll just have to find out as things develop. I just hope that DTC testings will not be used with malicious intent in the future.
I agree with Rachael. I don't think that it is fair to blame a corporation for the disintegration of a marriage when the test results were most likely the last straw to break a troubled marriage. That being said, I believe that if we do realize this risk for knowledge that might extend beyond simple interesting facts about our heritage then we are ready for this revolution. This brings up the question of how to make consumers aware of these risks. I believe that partnerships with genetic counselors and providing the support needed to understand certain results would help to accomplish this goal of promoting personal responsibility.
ReplyDeleteMoreover, I don't think blaming the DTC companies for adverse responses is a wise choice. This technology has already been created, marketed, and distributed to the general public. Trying to eliminate it or criticize the providers is not effective. If it is not 23 and me, it will be another company taking up their same tactics. Instead, collaborative measures need to be taken to make sure that we can provide consumers with the resources to understand their results and deal with their implications.
As for the family tree idea, I find it to be amusing but I don't necessarily find it to be helpful in dealing with the consequences of making genetic testing available to the public. Moreover, I feel as if there may be potential adverse effects when couples map out their genetic information and realize that they are distant cousins. Regardless, it is an interesting feat to try to accomplish and I look forward to hearing how it pans out.
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.
It is not fair to blame DTC companies for the potential negative outcomes of their services. While 23andMe and other direct- to- consumer genetic testing may have good intentions, Entrepreneur's article reveals how finding out who you really are can have negative ramifications. I thought it was interesting how the article published in Entrepreneur compared DTC genetic tests to cites like Facebook and Yelp. Similarly to other companies services, consumers need to realize that every product does not always yield the expected benefit. It is the consumers responsibility to fully understand what the genetic test offers and the possible consequences of the test. However, I believe it is also the DTC company's responsibility to provide this information to consumers. Although DTC companies missions are to help people learn more about their family history and own medical background, there are sometimes other outcomes. Entrepreneur describes the possibility of other results as an unexpected rewrite of someones family history.
ReplyDeleteThe only way we would be prepared for this "personalized genomic revolution" is if we proceed with caution. If society uses these DTC companies services they have to go in knowing the potential results. Moreover, before going in they should ask themselves what does my DNA and family history mean to me? If paired with genetic counseling to help people interpret the results, I think these services would yield beneficial results.
I was so intrigued by CNN's article, that I was compelled to check out the Global Family Reunion. A tool that allows me to discover all of my relatives incited initial curiosity, but soon after I thought, who cares if I am related to a celebrity. What are the implications of knowing all of our cousins? Before reading this article I was unaware of all the possible outcomes of finding out my family tree; however, reading the whole article I was presented with the negatives and positives implications. I think people who elect to participate in these services should take personal responsibility to realize these ramifications. Its true, there is the potential to find out that you did in fact marry a distant relative. If you participate in these studies you should be aware that you could find out about a half brother or sister along the way. There are "skeletons" in our family trees. On a positive note, I think this tool can help someone trace back their roots, find their identity and their place in the world's family tree. Someone looking for their birth parents or a long lost relative can be reunited using this tool. A. J. Jacobs goal is that through a world family tree, we can see people as cousins instead of strangers and having one big family can allow people to be more accepting.
DTC genetic tests and family trees provide the possibility to learn more about your family history. Both tools have potential consequences; however, if we know the possible outcomes before electing to participate we have to take ownership of the results. Because these tests are not mandated or a population based health intervention we have to have accountability when choosing to use them. Furthermore, I think it is the responsibility of the companies to provide all appropriate information about the tools, including all potential outcomes, in addition to the consumers responsibility to take the time to fully understand the benefits and risks to the resource they elect to use.
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.
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
The pros of genetic testing far outweigh the cons. It can be a key tool in preventing the development of diseases, detect potentially harmful genetic mutations, and encourage people to make certain lifestyle choices that will be most beneficial to their individual health. I do not think it is fair to blame DTC companies for creating problems within families, especially when it is up to the consumer to interpret the information they receive from the testing. I think it is fair to assume most married couples would not file for divorce upon finding out they are distantly (often very distantly) related to each other. DTC gives consumers the opportunity to trace their genes and learn about their family history, which I think most people would find extremely interesting. If consumers decide to let the results of the testing impact them negatively, that is up to them. Genetic testing companies should not be held accountable for consumers’ dissatisfaction with their results. If you are worried you might find out something you’d rather not know, then you have the choice not to participate in the testing. Consumers’ genuinely interested in learning about their genetic background should not be deprived of the opportunity to do so just because a handful of individuals have been unhappy with their testing results. DTC genetic services could be useful in improving public health as a whole and should definitely be taken advantage of.