S1E1 - The Problem With 23 & Me
(Oh quick disclaimer I’m not sponsored by 23 & Me in any capacity I was just a bit curious as to what they do and how they do it. So I did a little digging ) I will advise that if you end up deciding to use their services, please do your own research since this is just what I have found while I was doing mine)
Ooooooo lets jump right in. The 23 & me tag line is the following:
1. Order
2. Spit
3. Discover
It all sounds so simple huh?
Alright so what is 23 & ME?
23 & Me is a genetic testing service. They provide not only a product (Health and ancestry or just ancestry kits) but also the research and testing services used in conjunction with those kits to determine a few different things
1. what genes you may carry that increase your likelihood of having a disease like cancer
2. What regions your genetic make up comes from
3. They offer a service where they can connect you to others who could possibly be your relatives. Any long-lost family members, grandfathers, half siblings etc.
4. They get your permission to use your DNA samples and results in future testing or research– this one is the one I found most intriguing.
How does it work?
Well first you order the testing kit, it arrives to your mail box or on your doorstep then you open it up, follow the simple directions (spitting in the containers they provide) then you ship it off to them and they test it for you then provide your results to you.
If the DNA sample you send in is acceptable and testable, then they provide your results in your personal 23 & Me account or profile.
Keep In mind that a small percentage of the DNA samples sent in are untestable and when this occurs they allegedly offer to send replacement kits and retest these at no cost to you.
If the second DNA sample is also untestable then 23 & Me will offer to refund your initial money under the condition that you do not attempt to purchase another testing kit in the future.
Side note I say allegedly for a few reasons, one of which being the reviews on their BBB profile. Which you can look up after this episode, the link is in the show notes. I didn’t want to read these off on the episode since I do not personally know each individual person nor do I know the validity of their individual experiences with 23 & me.
That being said.
If you decide to go against this condition and you do purchase a future kit and that sample is untestable, then 23 & Me will not only refuse to offer a replacement kit, but they will also not refund the money used to purchase the kit.
Now this is stated clearly in the terms of service contract that you accept when you create an account.
But we all know that most of us don’t really read these terms Sooooo I’ve read them for you! Let’s jump into the bits that I found to be slightly strange...
Terms of Service:
What you’re signing up for:
1. You acknowledge and agree that the form and nature of the Services which 23andMe provides may change from time to time without prior notice to you.
2. You are providing them with a DNA sample that is either yours and you are of legal age (18 I believe) or that you have permission to provide the sample (if it’s not yours, let’s say it’s your grandfathers or something)
3. After you provide it you are giving 23 & Me the permission to test the sample and provide the results to you on your profile.
These are all pretty basic, we expect these to typically be in any terms of service agreement. Basically that you have the right to share the information, are legally allowed to use their service and that you give them the right to perform their service for you. And that they can change their service at any time without letting you know.
4. Now this one was one of the interesting bits included in there and I quote directly from the 23 & me terms of service accessed on February 12 2019.
“Genetic Information you share with others could be used against your interests. You should be careful about sharing your Genetic Information with others. Currently, very few businesses or insurance companies request genetic information, but this could change in the future.”
“If you are asked by an insurance company whether you have learned Genetic Information about health conditions and you do not disclose this to them, this may be considered to be fraud.”
Whoooooa there, alright so basically who you provide your results to is up to you which is great. But any outcomes resulting from you sharing the results provided to you by 23 & Me is not their fault. You are responsible for the emotional response that comes from either you interpreting your results or others interpreting yours or their own results. This may impact your life or others lives in negative ways, but this is not in any way the responsibility of 23 & me.
So what could really happen once you see your results?
Well there is one individual who wrote an article for Vox who found out they had a half brother. This resulted in the divorce of their parents and a strained relationship with their father. Now I don’t know the validity of this persons experience with 23 & me or the other factors that could have led to the breakup of their family unit. but the link is in the show notes as well for you to read and decide for yourself.
Additionally, not divulging this information may result in fraud allegations, but divulging it may refult in you loosing your health insurance coverage in the future as a result of this, or your vehicle insurance may increase etc. Not to mention having to live a life fearing that every check up could be the one that tells you that you have a type of cancer. I mean that’s something that you will have to decide on your own.
Next interesting point in the terms of service: begin quote
5. You specifically understand that you will not receive compensation for any research or commercial products that include or result from your Genetic Information or Self-Reported Information.
Meaning, no matter how impactful your DNA sample is to the medical industry, (could be the discovery of a genome that contributes to the fight against some disease cough cough, the story of Henrietta lacks ) you will no longer have any rights to claim to get compensation or recognition for your contribution to the advancement of medicine or technology etc. This is just an interesting note, but something we should all be wary of for a few reasons.
One being that you will most likely never be able to file a claim if this were to happen, but the other being who is compensated in these cases?
Granted, we know that people like the cofounders of 23& me are definitely profiting off your information but who else? Hmmmm well this following quote accessed on February 12, 2019 may help form a better picture of who truly benefits in a case such as this:
“If you have given consent for your Genetic Information and Self-Reported Information to be used in 23andMe Research as described in the applicable Consent Document, we may include your information in the Aggregated Genetic Information and Self-Reported Information we disclose to third parties for the purpose of publication in a peer-reviewed scientific journal. 23andMe may also include your information in Aggregated Genetic and Self-Reported Information disclosed to third-party non-profit and/or commercial research partners who will not publish that information in a peer-reviewed scientific journal. 23andMe Research may be sponsored by, conducted on behalf of, or in collaboration with third parties, such as non-profit foundations, academic institutions or pharmaceutical companies. 23andMe Research may study a specific group or population, identify potential areas or targets for therapeutics development, conduct or support the development of drugs, diagnostics or devices to diagnose, predict or treat medical or other health conditions, work with public, private and/or non-profit entities on genetic research initiatives, or otherwise create, commercialize, and apply this new knowledge to improve health care. 23andMe will never release your individual-level Genetic Information and/or Self-Reported Information to any third party without asking for and receiving your explicit consent to do so, unless required by law.”
And so continues the commercialization of our data for the profits of large corporations with no residuals trickling down to the very providers of said information.
Sadly companies this large don’t even offer the possibility of using their services with out agreeing completely to their terms of service. In my ideal world, these contracts should have both parties interest in mind. Both sides should be protected as is the typical understanding of most contracts individuals willingly enter, for example some marriage contracts or prenups. Both parties review and revise said contracts and agree to the terms set then they sign.
Alright, Last of all from the term of service, this one I think just plays into my perpetual fear of losing all rights to my privacy and the way that society can create situations in which a breach of privacy is not really a big deal. Direct quote accessed also on February 12, 2019 begin quote
6. Further, you acknowledge and agree that 23andMe is free to preserve and disclose any and all Personal Information to law enforcement agencies or others if required to do so by law or in the good faith belief that such preservation or disclosure is reasonably necessary to: (a) comply with legal process (such as a judicial proceeding, court order, or government inquiry) or obligations that 23andMe may owe pursuant to ethical and other professional rules, laws, and regulations; (b) enforce the 23andMe TOS; (c) respond to claims that any content violates the rights of third parties; or (d) protect the rights, property, or personal safety of 23andMe, its employees, its users, its clients, and the public.
So not only can 23 & me use your results or information to protect itself from claims made against it but it can also divulge your private results in any cases it deems “reasonably necessary” Whose reason are we basing this on? The moment you accept those terms and conditions, 23 & me can preserve your DNA and the results to be used in future investigations, either involving or not involving you that may result in further investigations into you, your family, etc.
For example, disclaimer I am not a lawyer nor do I know all the ways that the law would act in this case, this is definitely hypothetical. But if you use a product from a company and you develop cancer and find that the cause could be a result of using that companies’ product, so you decide to file a claim against them for medical costs.
That company can try to request a court order for your medical files, including 23 & me and lets say that on the finding, 23 & me determined that you may carry a genome that increases your risk for cancer, That company may argue that their product cannot possibly be the sole cause since you already had the predisposition to the disease.
Moral of the story, yes 23 & me offers an intriguing service, but at what cost?
Now that’s enough of the terms of service, those are the points that I felt were the most interesting. The remainder of the TOS just followed the basic rules, that 23 & me isn’t responsible for anything that happens after you use their service, etc. etc.
Alright lets go through the pros and cons of this service.
Pros of using 23 & ME:
There’s a few pros to using the service which some can argue can also be considered cons, but lets go through them real quick anyway.
1. You’ll be more informed about your genetic makeup – things you should watch out for, things you may pass on to your kids and ways you can change your day to day life that could improve your overall health
2. You may feel more relieved after getting your results – there could be a reduction in anxiety, stress or feelings of shame and guilt
3. You may find distant relatives that could help you better understand your roots
4. You may feel more in control of your life and destiny as a result of the testing
Now those all seem pretty great, but do the pros outweigh the cons? Lets go through the cons real quick just for completeness sake
1. Hacking - submitting your genetic information to large companies who maintain your data for years afterwards does leave you open to a few modern age risks, one of which is hacking. Atleast twice a year we hear companies admitting to being hacked. From companies that monitor our credit scores, to companies that provide us our internet services both of which do have some pretty substantial impacts on our finances and our privacy. Bringing in companies that literally have information on what makes us, us could have some outrageous consequences. Hackers who intend on accessing genetic information and using it for biomedical terrorism. This may result in a change to how we deal with modern warfare . and in my opinion at the moment, the way society deals with companies that are hacked does not inspire confidence in the average citizen. The lack of information and interest on the way that these companies maintain and defend our data is sorely lacking.
2. The use of your genome for marketing purposes. 23 & me does reserve the right to use the information you provide to them for creating new products or services. So once they know what you are more likely to be concerned about they now have a foot in the door to create a product that specifically fits your life. This may result in an increase in revenue for 23 & me with no residuals trickling down to the very consumer that provided them the data to create these new services or products. Are we now selling our actual selves to these companies? And what is the long term impact of this shift In consumerism and sense of self? And at what point do we begin establishing clear guidelines for what these companies can do with our data?
3. And the last one that I thought was pretty interesting would be the use of your genetic testing results to identify individuals suspected of criminal actions. There is already a few cases where the dna of relatives has been used to track and capture suspected individuals. In the long run I see this becoming a commonly used method by law enforcement. and per the 23 and me terms of service, if a request is filed by law enforcement for your data they will notify you but they are also legally obligated to release that information to them.
How does this change us?
- There’s a few negative changes that can occur once an individual is made aware of their genetic testing results.
Ill just list them off for you.
1. Emotional distress leading to an increase in depressive episodes, a change in your overall outlook on life and your daily routines.
2. Breakdown of the nuclear family unit – as a result of finding out that your parents aren’t your parents, or that you have relatives that neither you or your siblings/mother was aware of
3. Emotional and health deterioration caused by the information that you do have an increased risk of developing a disease at some point in your life. For example breast cancer with the BRCA1 and BRCA2 markers or Alzheimer’s etc. an almost nocebo effect can occur.
4. The additional stress of making lifestyle or health changes such as getting a full mastectomy or stopping your intake of certain foods, increasing work outs. Especially since this is not an exact science, these changes could wind up not truly changing your level of risk In the long run. An individual may also decide not to get a second opinion and makes permanent decisions and then finds out later that they were never really at risk to begin with. In a world where advancements in testing procedures and protocols are occurring at a daily rate, its hard to truly know not only what you are at risk for but also when you will reach the tipping point where changes will no longer help in any way. What we do know is that stress does negatively affect your body.
Alright so that’s just a handful, I’m sure digging a little bit more we could find more negative effects of having so much information at our fingertips. These are just a few things you should keep in mind before diving in to Genetic testing whether through 23& me or the handful of other testing services available out there.
- Also one last tip: when you go in to your own doctor and request a genetic test, make sure you know where your doctors are sending your DNA testing they could be using 23 & me. Your data may be submitted to them and end up in their databases without you knowing. Ask your doctor which labs they use and how your genetic information is being safeguarded.
That’s all I have for you this week. I truly hope this was exactly what you needed and hope that you will join me next Tuesday to cover another interesting topic.