FlourishAnyway is an Industrial/Organizational psychologist committed to uplifting and educating others to be reach their full potential.
For Genetic Testing, the Future Is Already Here
Who Owns Your Data?
Before you spit into that vial and mail it away, make sure you understand the risks of what you're about to undertake. This devil's bargain is about much more than learning about your genealogy and health traits. It could comprise your ability to get life, disability, or long term care insurance or severely affect the rates you pay for those services. It could also impact your genetic relatives, even though they did not personally undergo testing.
23andMe is not the only direct-to-consumer genetic testing service, but it is the largest company in the market. The company is a for-profit, publicly traded organization with major financial backing from pharmaceutical giants GlaxoSmithKline, Johnson & Johnson, and others. Those multi-billion-dollar drug companies obviously seek your valuable genetic data. When you sign up for the service, you are agreeing to sell 23andMe your genetic information so that they can re-sell that biological data to others.
In December 2013, the U.S. Food and Drug Administration (FDA) raised some red flags with 23andMe, and it was out of the genetic testing business until October 2015. In the years since, however, they've come back with a vengeance thanks to clever marketing and Americans' interest in genealogy. But don't be too quick to sign up.
Prior to December 2013, 23andMe touted new age promises of direct-to-consumer genetic testing. At the time, eager users like me were provided with personalized information regarding:
- Risks for 120 health conditions
- Carrier status for 49 rare diseases
- Standing on 57 traits
(The reports sound more useful than they really were, however.)
Users paid $99 for:
- surveys that benefit the medical research community—pharmaceutical companies pay 23andMe big bucks for access to your data.
- uninterpretable raw genetic data.
- ancestry information and
- risk. Plenty of it.
Colorful Survey Topics and Your Private Information
There's No Going Back
If you're not feeling exposed yet, then you should be.
In addition to the ancestry benefits that 23andMe touts, consumers of DNA testing should understand possible medical, legal, and personal risks of getting such testing. They should understand that once certain information is provided, it can never be taken back. This is the proverbial horse that's been let out of the barn. There's no going back on this information.
No matter how curious you are, the benefits that 23andMe provides should pale in comparison to its risks. Yes, welcome to the brave new world of
- spit in a test tube
- pay $99 plus shipping
- answer loads of intrusive personal questions about your health and lifestyle (known medical conditions, pesticide exposure, sexuality, family background, drug use, etc.)
- then turn over your medical and personal data so big companies like Pfizer and Genetech can use it for their own financial gain. (Yes, folks, this is where Big Pharma steps in.)
My recommendation: Think very carefully before you do this.
I went in with an open mind, enthusiastic to discover more. However, I have emerged with deep concerns about privacy, the ability to withdraw from medical research, and who really owns one's data.
Do You Really Want To Provide DNA for Ancestry Purposes?
Direct-to-Consumer Genetic Testing Becomes Widely Accessible
The possibility of learning about one's personal genetic unknowns has intrigued the public since 2008, when 23andMe's direct-to-consumer (DTC) genetic test was named Time Magazine's Invention of the Year.1
At the time, however, the company's price tag for personal DNA analysis was $999, placing the service out of reach for many. (For those willing to pay attention, there's a lesson in there about being an "early adopter.")
Read More From Patientslounge
The Google-backed company has dropped its price several times since then in an effort to attract more customers. In December 2012, the fee was "permanently" reduced to $99, plus shipping ($9.95 in the United States)—permanently, I guess, until the rate increase to $199 in October 2015.2 To add to the confusion, the company now offers two different services, each at different price points.
At these lower prices, many people find themselves at a decision point: "Should I get at-home genetic testing?" I was one of them. I signed up before the December 2013 FDA involvement. I went in with an open mind, enthusiastic to discover more. However, I have emerged with deep concerns about privacy, the ability to withdraw from medical research, and who really owns one's data. Following is my opinion, based on my experience.
We do not sell, lease, or rent your individual-level personal information without your explicit consent.
— 23andMe (personal communication to the author)
What Are You Trading Away For That Ancestry Information?
A Cautionary Tale for Anyone Interested In Genetic Testing
Your DNA Can Make Others Very Rich
Registration Was So Easy
Signing up was so easy, but that's often the thing about mistakes—they're easy to make and challenging or impossible to reverse. As someone who was curious about my own health risks and carrier status, I decided to take the chance and enroll.
I registered online with 23andMe and provided the required personally identifying information. This included my name, address, email address, and credit card information for payment of the service. The option to be tested anonymously does not exist. Don't think I didn't want that option.
The company subsequently mailed me a "spit kit" to collect a small amount of saliva. They had to do it twice because I didn't understand how to properly use it the first time around.
I subsequently returned the sample to the contracted laboratory for processing. (To promote privacy with the third-party testing lab, the consumer uses a registration number instead of his or her name.) Then, after 6-8 weeks, I received the information I had been waiting for.
Full Of Possibilities: Patents, Profits, and Your Genetic Data
|Potential Benefits||Potential Risks|
Learn your percentage of Neanderthal ancestry.
You could discover uncomfortable information about family heritage or biological relationships (e.g., paternity, you're adopted).
Learn the countries where your genome may have come from.
Some of the surveys are very personally intrusive.
Find people in the 23andMe community with similar profiles and interests.
Once you've completed surveys you can never opt out. 23andme retains your data for "internal purposes."
Attempt to contact your DNA relatives near and far. (Many don't respond.)
There is a possibility of exposing individual-level information.
Potentially assist medical research and perhaps indirectly benefit from any discoveries.
Your data could be made public or disclosed to insurance companies.
Possibly manage risk through better lifestyle choices.
It may be more difficult to get life, disability, or long term care insurance. (GINA only protects against genetic discrimination in employment.)
Prepare for the possibility of serious diseases/facilitate conversations with your healthcare provider(s).
Oversharing of relatives' information. Your participation could expose relatives to potential risks that they aren't aware of or don't consent to.
In the event of corporate bankruptcy, consumers' genetic data would likely be considered a corporate asset and sold. That is what happened when deCODE, a prior competitor of 23andMe, went bankrupt in 2009. Pharmaceutical giant Amgen purchased the company in December 2012 for $415M, in part for its large data bank.
You may learn about your own health risks or carrier status and by extension the potential risks and carrier status of your relatives.
Now They Know So Much About You
Why Is a Spit Sample So Valuable?
Personal genotyping consists of genetic analyses conducted on a small sample of a person's DNA. Saliva is used because our spit is a genetic window to who we are. Saliva samples contain DNA cells for analyzing single nucleotide polymorphisms, or SNPs (pronounced "snips"). SNPs are patterns of DNA cells that contain small changes, or copying errors.3 These errors occur when cells reproduce. As a result, SNPs contribute to both observable and unobservable variations in health, physical appearance, and other aspects of what makes each person unique.
SNPs are inherited from one's parents. Therefore, they can be used as an index of genetic similarity. The more closely related you are to someone, the more likely you are to share SNPs. For example, you share more SNPs with a sibling than a third cousin.4
When you turn over access to your DNA plus combine it with personally identifiable information (e.g., name), and then provide survey data (e.g., questionnaires on sexuality, personality, drug use, lifestyle), you hand over the keys to not only your own identity but that of your relatives. Why? Thanks to publicly available records, you have divulged a motherlode of information about not just yourself but also your relatives. And there's no going back.
Who knows how this information will be used in the future?
More than 10 million SNPs exist across the human genome, and prior to the FDA's involvement 23andMe tested for about one million of these coding variations.5 This coverage of only a portion of the genome was one of the major criticisms of 23andMe even before the FDA became involved.
In contrast, competitor companies offer an analysis of their entire genome (called "whole genome sequencing") for about $1,000. Such analyses typically require the involvement of a personal physician.
Family Tree: What Will You Dig Up?
Nothing Is More Personal Than Genetic Analysis
Like hundreds of thousands of other people, I took the testing before the FDA put a halt to 23andMe's personal health analytics. The U.S.Food and Drug Administration (FDA) intervened in late 2013 because of concerns that this service eliminated the physician as consultant or middleman by offering testing services directly to consumers.
During the entire process, rather than relying on a personal physician to request testing, deliver results, and answer questions I communicated directly with 23andMe. Diagnoses were never involved—just potential risk factors and carrier statuses. Imagine, however, the personal impact of discovering that your results include Parkinson's or another serious illness. That physician as middleman sounds more necessary than ever.
The Gate Has Been Unlocked
Regardless of your consent status, we may also include your data in aggregate data that we disclose to third-party research partners."
— 23andMe Privacy Statement
23andMe Testing: You're Putting Yourself At Personal Risk
Do you care about this information so much that you could risk not being able to get life insurance or long term care insurance? If an insurance company gains access to your data, then these could be the consequences not only for you but potentially also for your relatives who did NOT consent to having their DNA tested.
Is genealogy information so important to you that you could risk a possible data breach? Regardless of what 23andMe says about their security and privacy protocols, think about hackers and the value of all that data in one place.
If data systems can be breached at the IRS, Target, Home Depot, Anthem, AOL, Heartland, Ebay, JPMorganChase, and other large organizations, what makes 23andMe and their corporate partners immune? If you think you're not at risk, you're fooling yourself.
Risk Assessment for Health Conditions
I received the full "benefit" of 23andMe services prior to the December 2013 FDA involvement, when they were supposedly unimpeded by government intervention. I was left with a big "so what?" Today's consumers who grasp at the even more watered down health reports should consider that carefully.
The so-called health information was of varying usefulness. Some conditions tested only one or two genes associated with a disease or condition known to involve multiple genes. (What's the real value in that?) Other results were based on findings of questionable validity (e.g., preliminary research studies involving less than 100 people). This is scientifically meaningless.
Still other reports were marginally interesting but of no practical value: hair curl and earwax type. Finally, there were other results that seemed to be issued based on what I had reported to 23andMe already in a survey. They were reporting back to me what I had reported to them. Duh!
Now Just Try To Undo It
A Word To the Wise
I became alarmed with 23andMe in the Spring of 2015 when I attempted to confirm with the customer care department that they had my status as OPTING OUT of research participation. The company's recent partnerships with 12 big pharmaceutical companies had triggered concern about privacy, security, who owned my data, and how it would be used.
I had completed some but not all of their exhaustive battery of surveys and had not logged on for a very long time. In response to my clearly worded request that I withdrew my consent from research, the customer care replied that "23andMe may still use the information for internal purposes." 23andMe was the door that, once opened, can never be shut.
I am left to wonder what "internal purposes" means? Who has access to my data? What are they using it for? How many other people have made similar requests and had them unheeded?
Is it worth $199 to reveal your genetic code to a private company with big links to Big Data for the mere benefit of perhaps connecting with fifth-degree cousins. In the future will we be able to Google our DNA code?
What's In Those Surveys?
23andMe survey topics include a variety of topics. Examples include:
- personality measures
- commonly used medications
- sexual orientation survey
- questions about tobacco and caffeine usage
- pesticide exposure and
- which toe is the longest.
Although 23andMe indicates that 90% or more of its consumers do participate in their survey research, users can opt out of surveys they consider overly intrusive or decline to participate in surveys altogether.
Who's Hanging Out In Your Family Tree?
Reader Opinion Poll
Your Genetic Data Can Be Stolen
Your genetic data, survey responses, and/or personally identifying information may be stolen in the event of a security breach. In the event of such a breach, if your data are associated with your identity they may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage. Although 23andMe cannot provide a 100% guarantee that your data will be safe, 23andMe has strong policies and procedures in place to minimize the possibi
— 23andMe Consent Form
Decide What's Right For You
1. Hamilton, Anita. "1. The Retail DNA Test - Best Inventions of 2008 - TIME." Breaking News, Analysis, Politics, Blogs, News Photos, Video, Tech Reviews - TIME.com. Last modified October 29, 2008. Accessed March 15, 2013.http://www.time.com/time/specials/packages/article/0,28804,1852747_1854493_1854113,00.html.
2. Rochman, Bonnie. "Good Genes - TIME." Breaking News, Analysis, Politics, Blogs, News Photos, Video, Tech Reviews - TIME.com. Last modified August 20, 2012. Accessed March 17, 2013.http://www.enhancedmedicalcare.com/portfolio-items/time-magazine/.
3. National Center for Biotechnology Information. "SNPs: Variations on a Theme." National Center for Biotechnology Information. Last modified September 20, 2007. Accessed March 16, 2013.http://www.livingnaturally.com/ns/DisplayMonograph.asp?StoreID=3ED1FF6A18BD42979FFF73C8E8CD4512&DocID=genomic-snp.
4. 23andMe. "What are SNPs?" 23andMe. Accessed March 15, 2013. http://www.23andme.com.
5. 23andMe. "Genotyping Technology." 23andMe. Accessed March 15, 2013. http://www.23andme.com.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Questions & Answers
Question: Has DNA from ancestry databases, like 23andME, been used for other, unintended purposes?
Answer: When people submit their own DNA, they submit the DNA for their relatives by extension. Knowing this, law enforcement has accessed direct-to-consumer genetic databases and ancestry information to solve cases such as the Golden State Killer. Law enforcement and governmental bodies can subpoena the genetic information. Advertisers, hackers, researchers, and app developers also may have access to your genetic data. 23andMe shares your data with a pharmaceutical company, GlaxoSmithKline, and receives hefty compensation in return for the sharing.
© 2013 FlourishAnyway
FlourishAnyway (author) from USA on July 20, 2017:
jtman - Wow, that is some story, but it just goes to show how we are all connected and DNA can uncover things we both seek and seek to hide.
jtman on February 01, 2017:
Thanks to a close relative posting her 23AndMe DNA information on Ancestry.com, I just learned that I have a son from a relationship 48 years ago. I would have preferred to die in total ignorance of him. The young man wants me to contact him. I'm thinking that I likely will, but the real pain is informing my wife and kids of my irresponsibility many years ago. It is too late to put the DNA genie back in the bottle, but I wonder if my relative had any idea of the potential harm (emotional, legal, criminal, etc.) she could cause many non-consenting relatives with her posting decision.
FlourishAnyway (author) from USA on January 04, 2017:
Ashley - Thanks for your comment. I'm familiar with GINA; I wrote an article about it here: https://hubpages.com/business/Genetic-Discriminati... Unfortunately, GINA only protects against genetic discrimination in employment. That doesn't help people who are trying to get long term care or life insurance, for example, outside of their employer. It's a huge risk, plus they're making millions off your DNA.
Ashley on January 03, 2017:
Are you familiar with the Genetic Information Nondiscrimination Act of 2008? It prevents you from being discriminated against for jobs and health insurance because of your genetic information. The reality is that genetic testing can save insurance companies a lot of money that is spent on caring for patients who have adverse drug reactions or preventable medical issues. These tests can bring them to light before they become an issue, which is why medically focused tests are so much more valuable. Anyway, if insurance was your primary concern, this may be something to look into. Have a great day!
FlourishAnyway (author) from USA on August 17, 2016:
Ainsley - Although I do like that you sign up together with your doctor (hopefully after consultation), they do say that the service is an "informational and not a diagnostic service" and I would have similar concerns because of the health partnerships that exist (what sharing of data exists?). It may be superior to 23andMe but still shares similar issues. For example, potentially keeping you from getting certain types of insurance. Good question. Thanks for asking.
FlourishAnyway (author) from USA on March 26, 2016:
Peggy - I really don't think people are aware of the potential ramifications. To them, it's just curiosity and ancestry information. Oh, they're so mistaken! Thanks for helping to sound the alarm.
FlourishAnyway (author) from USA on March 26, 2016:
GmaGoldie - So glad you found this useful. Thanks for reading.
Kelly Kline Burnett from Madison, Wisconsin on March 26, 2016:
Fascinating! Great content and much to ponder. Thank you very much!
Peggy Woods from Houston, Texas on March 26, 2016:
They seem to be advertising this more often on television these days. Think that I will tweet this and share once again so that people understand the risks that they are taking if they decide to have the genetic testing done.
FlourishAnyway (author) from USA on January 25, 2016:
Glenn - They should definitely be paying users, rather than the other way around. Thanks for reading and for tweeting.
Glenn Stok from Long Island, NY on January 24, 2016:
I am so glad that I read your hub Shelly. I was thinking of using 23andMe to have my DNA tested. I never realized that I would be providing more information to them than they would be giving to me. What's the use of that? And in addition we have to pay for it. They should pay us! By the way, they also doubled the price since you wrote this hub.
You explained things very well and gave much more information than they provide on their website. And for that I thank you tremendously.
DNA testing still could be a useful thing to do, especially for those who are concerned and want to know more about themselves. But at least you provided information that's required for one to make an intelligent choice.
Everyone who is thinking of having their DNA tested should read your hub first.
FlourishAnyway (author) from USA on November 22, 2013:
electronician - Thanks for reading and commenting. That story of Henrietta Lacks (whom I am distantly related to) is an eye opener. It's a fascinating service, and I went ahead and got it but I do have my lingering doubts.
Dean Walsh from Birmingham, England on November 22, 2013:
Great write up, I hadn't thought about the risk that getting information about your own genome could have privacy implications for your family. Vote up and useful, and tweeted too!
FlourishAnyway (author) from USA on October 14, 2013:
denisefenimore - Somehow I missed your comment previously -- sorry about that! Thank you for sharing your experience. I'm happy that your results let you rest a little easier. Best of happiness and health to you and your family.
FlourishAnyway (author) from USA on September 25, 2013:
Benjamin - Thanks for reading and commenting. Genetic testing does seem to be the wave of the future, like it or not. Have a great day.
Benjamin Chege on September 25, 2013:
Hi FlourishAnyway. Well presented, detailed and informative hub. Voted up and awesome. I think genetic testing is important, though the truth hurts at times. It is good to know the reality at hand than hide from it. I would rather know I have an increased risk of diabetes and avoid certain foods that would make me more vulnerable, than remain in the dark and poison myself without knowing. That's just me.
FlourishAnyway (author) from USA on July 24, 2013:
Carly - Gosh, especially in your case it might at least give you some basic medical information. (Genetic potential for Alzheimers, Parkinsons, for example.)
I found out that I was at genetic risk for certain conditions that I had no idea about, and now I can make lifestyle changes. I also found out strange things such as that I am resistant to Norovirus (I rarely get the stomach flu, so that might explain it!). Additionally I received names/contact information for people who may be up to sixth degree relatives, people who were also genetically tested and are in the database. They may or may not accept the request to connect. The historical nationality information was fascinating for me personally. I found it worth the $99 but the privacy concerns are indeed scary in this Brave New World of medical testing. Good luck on your choice.
Carly Sullens from St. Louis, Missouri on July 24, 2013:
I enjoyed reading this very much. As someone who is adopted, and married someone else who is adopted, we are limited in knowing our family health history. I have since searched and found my biological family, but I am not longer in contact with them. My husband does not want to search for his biological family.
We have both considered genetic testing to have our biological information many take for granted. He does not even know his own nationality.
Also, as two adoptees married, we now have children. What have we passed down to our offspring? Genetic testing gives us some information and answers, where otherwise we would be left in the dark.
Your information, though you bring a lot to consider, makes me what to do this!
denisefenimore on July 04, 2013:
Because I have Alzheimer's in my family (Paternal Grandmother and Aunt), every time I would misplace something or forget items at the grocery store I would wonder if 'it' was starting. I joined 23 and Me and had my DNA test done. I am so glad I did! I can finally put the daily fear of Alzheimer's to rest in my mind. I also had my son's DNA done to make sure it didn't jump a generation. All is well and I can relax my mind. I do want to thank you for this article. I have to say the information you presented about where my DNA information could go if there is a sale of 23 and Me does give me something to think about. But if I had the chance to do it again I would. The peace of mind I now have is priceless.
FlourishAnyway (author) from USA on April 10, 2013:
Thank you for your read and your comment, Crystals-view!
Crystal Lobato from Colorado, USA on April 09, 2013:
I enjoyed this article. I can tell you definitely did your research. In many of my classes this topic is brought up and extensively discussed. Most of our findings are that people who know that a certain disease is inheritable and in their family do submit their DNA for whole genome sequencing and by doing so are more likely to receive better treatment due to the drug being unique to the person. Even though your entire sequence is out there, a select few know what the possibilities of genetic manipulation is capable of and know how to analyse it. Great job on the hub!
FlourishAnyway (author) from USA on April 09, 2013:
Thank each of you for your comments. I struggled tremendously with whether to go through with the testing. On one hand, I recognized privacy and security issues. On the other hand, I personally face an incurable disease, MS, that has some genetic connections but is poorly understood. In doing the research for this hub, I was most surprised by what would happen to user data in the event of a business change (sale, bankrupcy, etc.). I always considered my genetic material to be "mine," but the 2010 book, "The Immortal Life of Henrietta Lacks" by Rebecca Skloot was eye-opening for me -- especially the author's research notes in the back that address genetic testing. There are some exceedingly strong opinions in the literature both for and against, so I hope I was fair in representing them.
Jayme Kinsey from Oklahoma on April 09, 2013:
Very interesting! I can see how this would give a lot of people hope about the health. But at the same time, I can see where insurance corporations could twist it to make it a bad thing. I think I would prefer to just live day-by-day and take the good along with the bad. Voting up!
Catherine Taylor from Canada on April 09, 2013:
This was a fascinating hub. I had no idea that this was available to people, but I share your concerns. I am not sure that this would be for me for a lot of reasons specifically I would not be comfortable having detailed info about myself like that out in the world...and in some cases I think ignorance is bliss. Voted way up and sharing. Well done.
NMLady from New Mexico & Arizona on April 09, 2013:
I am going to link my Genomics: T-Gen, Med. Research & Forensics. I am so fascinated by this! Nice write up. You are more skeptical than I am.
Peggy Woods from Houston, Texas on April 09, 2013:
There are definite pros and cons associated with this type of genetic testing. I would worry about the security concerns most. Good to know about this, but for now, I will take a pass. Up, useful and interesting votes. Well written hub! Sharing with my followers.