Everything You Need to Know About DNA Testing and Your Privacy

Everything You Need to Know About DNA Testing and Your Privacy

When considering direct-to-consumer genetic or DNA testing – do the potential privacy risks outweigh the benefits of unlocking the wealth of knowledge about your health that’s locked away in your DNA? Today, let’s explore both sides of the issue.


What Are the Benefits of Direct-to-Consumer DNA Testing?

When direct-to-consumer DNA testing first became available, it was marketed to determine your genetic heritage.

Today, home DNA testing can reveal so much – not just where your ancestors lived but also information about your health and well-being.

The genetic variants included on a direct-to-consumer DNA raw data file differ from the clinical genetic testing usually done by a doctor. Clinical genetics looks at mutations that create a predictable disease state. Direct-to-consumer DNA profiling looks at Single Nucleotide Polymorphisms (SNPs) that are responsive to nutrition and lifestyle changes.

But the biggest benefit of direct-to-consumer DNA is one most people don’t think of or know about – and that’s what you can do with the raw data included in your DNA testing!

The Hidden Benefit of Direct-to-Consumer DNA Testing You Might Not Know About

When you do a DNA test, you’ll get a report back from the company with information about your heritage and even some health and wellness markers.

But you’ll also have the option to download the raw genetic data file the company generated when processing your saliva sample. And this is where things get interesting!

23andMe® and Ancestry.com® use the raw data file to interpret and create their ancestry and health and ancestry reports. Third-party companies – such as PureGenomics – can take this raw data and create a genetic profile to understand the relationship between your genes, nutrition, and wellness. This nutrigenomics report information is very different from what you will receive from either direct-to-consumer testing company.  Your raw genetic data is full of amazing information – that can be revealed with the proper interpretation – about the risk variants in your DNA code that may influence how you absorb, transport, and utilize nutrients, detox toxic substrates, metabolize macronutrients, regulate metabolic hormones, neurotransmitter production, and synthesis, and your immune response – just to name a few!

This interpretation of your DNA code helps create a “genetic blueprint” for your specific DNA and give insights into what nutrients you may have a higher demand for particularly in times of increased stress, trauma, and illness, what exercise is best for you, and recommended diet and lifestyle.  With this information, your provider can guide more precise nutritional support to optimize your genetic expression.

Understanding your genetic vulnerabilities and how they can be “turned on” by stress, a toxic environment, trauma, or poor nutrition is an invaluable tool in reversing chronic disease and for optimal health. A nutrigenomics report has the power to provide an understanding of the most fundamental aspect of our health and well-being.

PureGenomics is the company I recommend because they are led by a team of physicians, PhDs, and nutritionists who determine the strength of the evidence and whether the associated phenotype responds to nutritional or lifestyle factors. Each SNP in PureGenomics is assigned an evidence score that quantifies the level of supporting scientific evidence between the SNP and its associated effect.

What Are the Drawbacks?

Now that you understand why direct-to-consumer DNA testing – and the genetic information they can provide for third-party interpretation – is such a valuable and important tool, you might be wondering why everyone isn’t jumping at this opportunity.

The answer is: millions of people are! It’s estimated that about 30 million people have already done a home DNA test.

For those who are interested, but haven’t yet gone through with the test, what holds them back is typically one of these three concerns:

#1 What will the company do with my data?

#2 Will this information impact my insurance?

#3 Can other people access my data?

These are valid concerns and deserve to be explored.

What Will the Testing Company Do With My Data?

Understandably, this is the first question most people have about DNA testing. Luckily, it’s also the most straightforward to address; basically, you get to decide what the company can do with your data.

Testing companies like 23andMe specifically state that they will not use your information in any way you do not consent to. You get to decide if you want to (anonymously) share your data for research or for finding relatives (and building your family tree). You can elect only to access the information yourself.

The only exception to this rule is, in the unlikely case of a court order, these companies – like all companies – must comply with government orders.

So, should you participate in research if you’re concerned about privacy? The information used in research is de-identified – it’s not attached to any identifying information about you, like your name, date of birth, or contact information. By participating, you can help move the dial forward on some of the most important health research into topics like autoimmunity and cancer. However, you can’t pick and choose what research your data will be used for.

But, even if you decide you don’t want to participate in research, you can still elect to use direct-to-consumer DNA testing and simply opt out of research or family connections and keep your information private. For example, when people choose to make family connections, there are people finding siblings they did not know existed.


Will DNA Testing Impact My Health Insurance?

Imagine this nightmare scenario: your DNA testing reveals you have 2 genes associated with Alzheimer’s. (Remember – having a gene associated with a disease does NOT mean you will develop the disease. These are associated genes, not directly causal genes.) Your insurance company finds out, and suddenly your health insurance premiums are increased… or worse, they no longer will insure you at all.

If this is a fear of yours, you’re not the only one! In fact, this was such a legitimate concern that the government has stepped in and strictly forbidden this from happening.

The Genetic Information Nondiscrimination Act (GINA), passed in 2018, made it illegal for health insurance providers to make changes to eligibility or coverage based on genetic information. This means an insurance company cannot raise your premiums or deny you coverage based on any type of DNA testing – whether it was ordered by your doctor or done yourself with a direct-to-consumer DNA test. Thanks to GINA, this is one concern you can cross off your list.

Can Other People Access My Data?

Finally, let’s talk about the risk that haunts most people in all aspects of life: their personal data being compromised and accessed by unauthorized parties. This is a serious concern not only in direct-to-consumer DNA testing but anytime you share any sort of personal information with any company – from your bank to social media.

Companies like 23andMe® ask participants to waive liability and legal recourse in the unlikely event of a security breach. This means that if the company was breached, and your personal information was stolen, you can’t sue. While it sounds scary, this type of agreement is actually really common- it is often in the fine print, or “Terms & Conditions” – most people just don’t read it!

The reality is that we take a risk anytime we share any of our personal information. We have to make a personal decision if the potential benefits outweigh the risk. You also have to consider the likelihood of a security breach: big companies like Ancestry.com® and 23andMe® have heavy encryption meant to protect your sensitive information.

Steps You Can Take To Protect Your Privacy With DNA Testing

If you’ve weighed all the pros and cons and decided to go ahead with DNA testing, these are the common-sense steps you can take to protect your privacy:

  1. Read the consent forms and Terms & Conditions. They are written intentionally in plain English so that non-lawyers can understand them fully.
  2. If you have privacy questions, don’t be afraid to contact the company directly with your questions.
  3. Consider how much information you want to share with the company: remember, they won’t use your data in ways you don’t give them permission to (except in the unlikely event of a court order)
  4. Remember that if you DO opt-in for research, your information is de-identified, but you can’t pick and choose what research your data is used for
  5. Finally – you can change your privacy settings any time

Be Smart About Who YOU Share Your Genetic Data With

Now you know what the companies who provide direct-to-consumer DNA testing can and can’t do with your information. But they aren’t the only ones who can share your information: you also have the ability to download your raw genetic data and share it with others.

When you choose to download your information, you’ll be given a download warning. Once you take this information off the company’s servers, you’re responsible for it. While it might be tempting, you’ll want to think very carefully about sharing your genetic data to public sites. Once uploaded to public locations, your genetic data can be accessed by anyone.

When choosing a third-party company to help interpret your data, be sure they have a similarly strong privacy policy. Pure Genomics, for example, promises never to rent, sell or share your data and uses the latest encryption to keep it safe. (PureGenomics privacy policy)

DNA Testing Can Unlock An Incredible Amount of Information

Affordable, accessible DNA testing you can do from the comfort of your home is one of the biggest and most important medical advancements of the past 20 years. With your genetic information and the reliable, science-based interpretation of a company like PureGenomics, you can unlock invaluable individual differences -that can affect responses to health and nutrition. It offers new possibilities to help improve health and wellness through nutrition.

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