DNA Tests – Have You Considered the Risks?

Unexpected Results and Your Future

DNA home tests are all the rage, but there are some hard questions you should ask yourself before spitting into that vial and sending your DNA out into the world. When it comes to your health, would you want to know if you are a potential ticking time bomb for cardiac arrest, stroke, Parkinson’s, Alzheimer’s, Hodgkins, ALS, cancer, or any of the multitude of other conditions which can be triggered by certain genes? DNA tests, both done by clinical geneticists and through home kits, can tell you what may be in your future, healthwise. But just because you have the genetic marker for these conditions, it doesn’t mean you will ultimately be faced with a diagnosis for it.

Digesting the Information

Whether you decide to take preventative measures once you have the information is in your court. Let’s say you have the gene for conditions known to increase your chances for sudden cardiac arrest (SCA) – do you make sure you get tested regularly, have ECGs, keep an AED on hand, make sure your family knows CPR, etc? Or do you live dangerously with the knowledge in the back of your mind that you COULD go into SCA…maybe…sometime? It’s hard to decide if you want to be faced with this sort of “what if…?” hanging over your head. And what if you are told you probably passed this on to your children? Do you then obsess about their health? Do you, at some point, tell them? One consideration is the accuracy of these tests.

Accuracy

According to an associate scientist at a leading biotech company who asked to remain anonymous due to the sensitivity of the information his company handles, “Home tests consist of multiple components such as the lab process, the data analysis, and the data interpretation. The lab portion of a home test is quite accurate.” He goes on to say the accuracy is in the 99.9%.range, but warns accuracy is much lower when it comes to data analysis and interpretation, as each company develops its own algorithm which compares data from its customers. So a company such as Ancestry, which has in the neighborhood of 5 million consumers, has a greater database to compare against than another, like 23andMe, which only has half that many. Since race/ethnicity is also a factor in accuracy, someone of Asian or African -American ethnicity using a company with mostly Caucasian consumers may get less accurate results.

Health Predictions

When questioned about the health aspects of those types of tests, his response was they currently only test for a few variants of a gene which has been definitively linked to some disease. Additionally, they only test for roughly 10 conditions, not including cancer (except the new BRCA1/BRCA2 23andMe test). Another important factor consumers should consider when reviewing their health report is most genetic diseases have many variables in place involving multiple genes, lifestyle, and environmental factors.

What Has Been Seen Cannot Be Unseen

One statement in AncestryDNA.com’s privacy policy says, “You may discover unexpected facts about yourself or your family when using our services. Once discoveries are made, we can’t undo them.” It’s basically “what has been seen cannot be unseen” but with much deeper implications. Our DNA is what makes us…well, us. If we find out we are not what we thought we were, or we are other than we perceive ourselves to be, it can shake us in ways we did not expect and possibly affect our day-to-day activities.

Repercussions

Recently there was a lot of publicity around these home tests when it was revealed the Golden State Killer was arrested after police traced him using DNA submitted to GEDmatch.com. The kicker is it wasn’t even his own DNA test which led the police to him (what serial killer would willingly submit DNA samples to a public company?), but a distant relative who was one of GEDmatch’s 850,000 customers. The fact this distant relative’s DNA was a close enough match to the DNA retrieved at Golden State Killer crime scenes led police to his family tree which they used to narrow down the suspects. DeAngelo was one branch on that tree. Police began following DeAngelo’s moves and were able to get DNA from items he had discarded. Boom! Caught.

Consider how the results you receive may affect your family or your future family. Odds are if you have a genetic marker, then your immediate family does as well, and they may not want to know about it. The moral dilemma then faced is whether or not you should tell them. If you know you have the genetic marker for a disease or condition you could potentially pass down to your offspring, would it affect your decision to have children? On the flip side, you may discover your genetics are considerably different than your parents or your siblings, which could lead to questions some may not have wanted, or felt they would ever need, to answer.

Who Owns the Information?

Perhaps the biggest question is once you have had those tests done, where do the results ultimately reside, who has access to them, and can they affect your ability to get health, life, or disability insurance? The answer is exceptionally convoluted. Most medical facilities which do genetic testing keep your genetic information with your file and destroy the sample once testing is complete. Consumer home kits, however, are a completely different story. If you look through their privacy policies, which are quite lengthy and not the most scintillating of reads, you will see they can hold onto your sample and information unless you specifically request them to destroy it. Also, if you agree to allow your sample to be used for scientific research, they claim they “anonymize” the data, but there was an experiment where Harvard University students were able to identify 50 supposed anonymous people using the “blind” data retrieved from the sample and simple questionnaire filled out when submitting the sample for research. The bottom line here is to read every line of an agreement when it comes to your genetic material. You could be literally signing your life away!

Future Considerations

All of this data – what’s to be done with it? If you think it’s bad if someone steals your identity to book a flight to Bangkok, can you imagine what could be done if someone got their hands on your genetic makeup? We don’t know what the future of genetic engineering holds, therefore we cannot predict what may happen with these samples. Also, if someone could buy your genetic information, could it somehow affect your ability to get a job, get insurance, or otherwise succeed later in life? As of this article’s publication date, there is GINA, the Genetic Information Nondiscrimination Act of 2008, which protects against discrimination for securing employment and health insurance coverage based on your genes, but if that is rescinded at some point there is no telling what could happen. One thing GINA does not currently cover is life insurance, so if your genetic testing shows a propensity toward conditions known to cause early death, you may be denied coverage based on that data.

Too Young to Consent

Every child born in the US has their heel pricked and a DNA test run to check for between 30 and 60 known childhood conditions. Some states (like California) store this DNA information indefinitely. Some only store it for a few months. What may be done with this DNA information in the future? Are our children at risk for health or life insurance denial based on their genetic profile? Will they have any say in how their profiles are stored, used, or tracked?

The Upside

A best-case scenario could involve using all of this genetic information to form a better understanding of how certain genes work to “switch on” specific conditions. This could lead to researchers finding a cure or treatment for those conditions and/or discovering ways to keep these genes permanently “switched off”. It could be seen as the ultimate preventative maintenance.

Tell us what you think. Have you ever sent your saliva to one of those home kit DNA testing companies? What was your experience? Would you recommend it to others?

7 Responses to “DNA Tests – Have You Considered the Risks?”

July 17, 2018 at 7:38 am, ANITA said:

I am 64 yrs old and believe that one should leave well enough alone when it comes to DNA. We are who we are. Most everyone has a skeleton in their family closet somewhere, be it medical conditions or adverse personalities. We are to take each day as it comes, building on past that we know and trusting in God and the Holy Spirit to guide us through whatever life brings – precursers or not. Learn the best you can about yourself and history. However, ultimately, my concern about DNA testing is the possible misuse of the information for evil purposes. Trust is an earned thing and we seems to be in short supply of those in power who would qualify for it.

Reply

July 17, 2018 at 8:26 am, MS said:

As an adoptee, I wanted to know my background. I was not interested in meeting my birth family, but I wanted to know my heritage. Ancestry DNA was the perfect choice for me. I now know my heritage and am comfortable with that. I did not consider the aspects mentioned in this article, because the language of use was very clear when I did the test. Personally, I think several of the statements in this article are purposefully inflammatory. I am glad I did the test.
MS

Reply

July 17, 2018 at 8:47 am, Mitch Beard said:

I would like more information and cost for you DNA testing

Reply

July 17, 2018 at 8:52 am, AED Superstore said:

Hello Mitch,
We do not do DNA testing here at AED Superstore, but we included this article as DNA testing may indicate a propensity toward cardiac illnesses. If you are considering DNA home testing, we recommend you research the available tests and decide which is best for you. Have a great day!

Reply

July 17, 2018 at 8:52 am, Mike said:

The article is well written and brings up some very good points. I am not a conspiracy theorist but it does seem inevitable that at some point, DNA markers will replace your SS#… Something about voluntarily giving that info to a private company concerns me. For now, I’m going to continue “living on the edge” and continue to be who I am!

Reply

July 17, 2018 at 10:44 am, Harold Ingmire said:

I found this article fascinating and timely. I have close family members (step-family) that discovered they have the gene for Lupus, and that after over a decade of treatments nothing they have done in life would have made a difference – kind of depressing. On the other hand, knowing of a potential ailment could put you closer to a new cure.

Every military person has DNA samples on file since the early 2000’s due to the violent deaths of individuals that made historical methods of ID impossible.

Reply

July 17, 2018 at 12:57 pm, Karen Weinstock said:

Good article.
Had genetic testing due to a diagnosis. Initially didn’t plan to do it, but spouse encouraged me to get it done. It was fun trying to come up with enough spit for the tube towards the end of filling it.
I was negative for the gene triggering the check, but half positive for a different gene. Which increased monitoring for that issue, which does run in the family. They said the information will stay in their system. As they update what they are testing/looking for, the will rebook at my info. If anything more flags they will let me know.
As we, society, moves forward, I think we will see laws come out to protect the consumer from insurance hikes or failure to cover someone for the tests. There may be limits on how far law enforcement will be allowed to use the information as we move forward, but if you have done nothing wrong it should not impact your life.
Have toyed with the idea of checking the family background services. As we dig into the family tree it becomes more interesting on where the bloodlines run.

Reply

Leave a Reply

Your email address will not be published. Required fields are marked *