The Potential Landmines Of Genetic Testing Services?

from kottke

As part of a course he was teaching, a biologist sent away for a genetic testing kit from 23andMe for himself and his parents. When he went looking for other relatives on the service (which is now an automatic opt-out feature), he discovered he had a half-brother his dad had not told his family about.

More here.


5 Responses to The Potential Landmines Of Genetic Testing Services?

  1. Amanda Verile September 26, 2015 at 5:42 pm #

    The use of genetic testing services is a new concept to me that I just learned about from reading this article. After researching more about genetic testing services I learned about the positive that could come from discovering more about yourself, as well as the possible negative impact. I have often wondered about my ancestry and think that this would be an interesting experience. There is nothing more exciting than truly discovering things about yourself that can lead you closer to your ancestry. I think that every person in the world could relate to wanting to know more about their genealogy, ancestry and ethnic background at some point or another. It could truly be an enlightening experience and open your eyes to new perspectives of who you are and where your bloodline started. This type of testing is powerful and can have an immense effect on a person’s life.
    For example, the story told in this article highlights the negative impact these tests can have on a person. Every time someone goes through with the genetic testing they are taking a chance, and they should be aware that the results might come out different than expected. Finding out conflicting information from test results can completely flip a person’s world upside down. It cannot be stressed enough that these results can really hurt people and possibly their families as well. Genetic testing is risky but can be rewarding as well, people just have to be aware of the possibilities.
    What does a person do that just found out about devastating information that can destroy a family? This information is so incredibly powerful and this testing should not be taken lightly. If someone wants to explore their genetics than they should be aware of the possibilities that follow the results. I think that the services should take the time to outline how significant these results could be and the domino effect that could be set in place. If people are educated about the full risks and rewards of genetic testing services than personally, I believe it could be something incredible to explore.

  2. Laure Walker November 8, 2015 at 12:32 am #

    Genetics is something I am fascinated by. Being able to test someone’s DNA and determine things about their ancestors is amazing. DNA is used for a number of things such as crime scene investigation and paternity tests. I am interested in doing a DNA test to find out more about my ancestors. I also want to learn more about my ethnicity, and things of that nature. However, this article pointed something out to me that I never realized before.

    Like the author of this piece mentioned, he found out things about his family that he did not previously know. There are potential dangers of using programs such as 23andMe. In the author’s case, he found out about a half-sibling on his father’s side of the family that no one knew about. I agree with the author’s opinion that he told the company: there are probably a number of people who are using the website that have no idea about all of the information they can learn. There is also a question of ethics and law that is involved: should this company be able to release information about other family members without their permission?

  3. Liz Martinez January 13, 2016 at 5:10 pm #

    I have very mixed feelings on this article. While on the one hand, I can understand that many people may not be ready for the consequences of gaining knowledge they maybe didn’t want, I don’t feel that this is really the genetic testing service’s fault. No one forced these people to find out what they did, and while they may have felt morally obliged to share that information with others (for example in the case of the man who had a step-brother he didn’t know about, and decided to notify his family of this) these websites did not provoke this honesty. They simply told the truth.
    Looking at this from the legal perspective, these service facilities should probably put a disclaimer in the terms and conditions for use of their services simply to cover their tracks, and say that they are not responsible for any “emotional distress” caused by the findings of these genetics tests. This way the consumer is always clearly notified of what they are about to involve themselves in.
    That being said, looking from an ethical perspective, this notification may still not be enough, because in certain situations, these services may be fulfilling the wishes of one party while simultaneously sabotaging the wishes of another party without knowing which party is correct due to lack of information. For example, (this being entirely hypothetical) if a baby or small child is raped, and is put into protective services or given up for adoption and has a loving home, those parents are most likely to not notify the child of this until a very late stage in the child’s life in order to shield the child from any emotional distress this may cause them. If that child was to stumble across one of these genetic testing service however, they could find all of the information about their past life and tragedies at a possibly difficult point in their life, when they are not mentally stable or ready to know this information. In this scenario, the service would not only be going against the guardians wishes, but they could be putting someone who may not be of sound mind and body at risk by divulging traumatizing information to them when they are not legally capable of consenting to the terms and conditions at the beginning of the contract due to possible mental illness (i.e. Depression).
    However, looking at the letter of the law, one might be able to argue that protecting this information from an individual goes not only against said individuals right to be an informed citizens, but also their protections from having their life, liberty, or property taken from them without due process of law, as a part of their life could be potentially hidden from them without our permission, because someone override their request for a genetic test.
    While the results of a genetic test are definitely still the person involved’ right to know, they should be aware before gaining the results, that the information could be potentially very harmful to them and their family.

  4. DawnJ April 12, 2019 at 6:32 pm #

    I recall when I first heard of 23andMe and how exciting I thought it was that we could now learn so much about our genetics with a simple swab of the mouth. I was excited and ready to order my kit but I wanted to wait before purchasing one since this was fairly a new thing on the market and I needed to do more research on it first.

    After much passing of time and enough reading, I was sold and was ready to order. Only one thing bothered me though, and that was where we are in America with privacy. On a medical appointment I asked my doctor whether genetic testing would be helpful in determining what risks I may have for genetic disorders and hereditary diseases. To my surprise, my doctor advised against it, stating that health insurance companies could potentially use this information against me and decide to not insure me based on my results. This bothered me and I had never really thought it was possible or even legal for an insurance company to do this. But after discussing it further and reading more about it, I learned that anything is possible. The data from our results can be shared or sold. We are all familiar with privacy breaches happening in the best of companies – our data could end up in the wrong hands And because of the way our healthcare system is today, we just don’t know what companies are coming up with in order to save money.

    I am still interested in 23andMe for the genealogy aspect of it, but because so many companies do whatever they want with our data, regardless of consent, I am not comfortable with handing over yet more of what makes me who I am to strangers and not know what they are doing with it. It’s interesting that these tests doubled as a paternity test. And while this may be welcome to some, it is invasive to others, such as with adopted children or other situations that people may hold as private. Laws can easily be broken with this test and it can destroy families just as it did to the biologist in the article.

  5. Julia Garlock March 9, 2020 at 11:15 am #

    This article is surrounding the ethics of DNA tests like 23 and Me and how these advance tests can find any relative to you, which in some cases can cause emotional atomic bombs to be dropped on families. The author of this article is a scientist that did the 23 and Me test kit as a part of a experiment and then found out that he had in fact a half brother that he knew nothing of. Although the boy was in italy not upset by the fact that he had a brother that he had no clue about after seeing his families negative reaction his ill feelings around the situation also began to form. After the news of a half brother the experimenters mother divorced the father, kicked him out, and then the rest of the entire family excommunicated him. The researcher explained how his family has a large sum of healing to do after finding out the father kept such a big and hurtful secret as it was a baby from him sneaking away and cheating on his marriage. The researcher also made a point that if children that do not know that they were adopted do this test that they are going to freak out in the realization that their entire life was a lie. With information and arguments being brought into the light surrounding these DNA tests the question bags: is this ethical and should it be allowed? Although the author believes that some things are better off unsaid, people should not have to not take a DNA to find out their roots because of somebody else’s lie. I understand the author is saying this to try and protect the prospective people taking this test however it is a right to know what you are and who you come from. The suggestion to warn people that tests like these can cause discrepancies in families is a nice suggestion however it is also important to take into consideration that those who have been lying will not speak up and try to sway someone to not take the test because that would equally expose them making the warning label useless. An important thing to remember about these tests is that the people taking them feel unanchored in their genetic makeup and also with their relatives. It is very rare for a case like the one the author experienced to happen because most people take these tests wanting to find relatives not worrying about finding out what their relatives are already hiding from them. Overall, I feel that for these DNA tests like 23 and Me to warn every customer of the emotional dangers of this product hurts business and puts unnecessary stress on those that want to take it. It is impossible to blame the 23 and Me test for ruining families because of its lack of ethics when it is in fact the people getting caught in huge lies to their family who are the ones that are unethical and lack morals.

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