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?