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Keven Moore: Home DNA kits have become a hot item; know the ins and outs before you order

In theory, you could be discriminated against for health or for racist reasons.

In theory.

DNA is a double helix formed by base pairs attached to a sugar-phosphate backbone. Source: National Institutes for Health

This will probably be a more real issue in the future, but right now, the data, algorithms, and accessibility aren’t there.

Voluntary records from familial DNA searching sites can be used for evidence by the FBI and other law enforcement agencies. Ancestry.com and 23andMe both specify in their privacy policies that they will turn information over to law enforcement if served with a court order. Can police use your relative’s DNA against you, and how can you stay protected?

DNA is what makes us who we are. In humans, our genetic makeup is 99.9 percent similar to the person next to us, but that tiny 0.1 percent difference is what makes each of us unique — providing us with traits such as eye and hair color, height, and even disease.

Genetic testing is now available for more 2,000 conditions from more than 500 different laboratories, according to the National Institutes of Health. As genomic technology grows at a rapid pace, testing that was once reserved for newborn screening exams and a handful of genetic disorders is now commercialized.

It’s simple: order, spit, ship, and wait.

Prior to April, 2017, genetic testing was limited to medical professionals who were testing patients for certain inherited traits and disorders. With the Food and Drug Administration’s approval of the first-ever direct-to-consumer test, the company 23andMe can not only sell commercial DNA kits to determine ancestry, but they can test for 500,000 genetic variants to assess for risk of developing any one of 10 diseases.

You can do this in the privacy of your home, but should you?

Here are 5 questions to ask before ordering a home genetic testing kit.

  1. Is this test right for me?

Be an informed consumer. Experts recommend seeking professional genetic counseling even before ordering the kit to better understand the implications and limitations of the results. Since the process of developing a disease is much more complicated than just the presence or absence of a certain gene, seeking out the expertise of a genetic professional can aid with putting the results into context based on your family history and medical problems.

Related: ‘Nobody’s Business’? 5 Things To Know About Genetic Testing Bill

The FDA recognizes the seriousness of this testing, and reports that consumers must first acknowledge that the results may cause anxiety. The opt-in page provides resources to professional medical associations.

  1. What am I being tested for?

In the only commercially available direct-to-consumer test currently available, 23andMe assesses your genetic risk for a few different diseases, including:

  • Parkinson’s disease
  • Alzheimer’s disease (late onset)
  • Alpha-1 antitrypsin deficiency (affects the lungs and liver)
  • Hereditary thrombophilia (affects blood clotting)

“The Alzheimer’s Association believes you need to think thoroughly before getting a genetic test,” says chief science officer of the Alzheimer’s Association Maria C. Carrillo, Ph.D. “There are 100s of genes for the Alzheimer’s disease. So, it’s important for people to know the test is only looking for one gene that has the highest risk for Alzheimer’s.

If there are other diseases you are concerned about, speak with your doctor or a genetic counselor who is capable of ordering specialized testing.

  1. Will these tests predict my future?

No, the current test offered does not have the capability to diagnose you with a certain disease. It can only inform you of your genetic risk, but not overall risk. Keep in mind DNA is not the sole determinant of disease. There are also gene variations, family history, lifestyle choices, and environmental factors to consider in how genes are expressed. Just because someone has a genetic risk, it does not mean they will go on to develop the disease. In cases of sufficient scientific evidence, a genetic report will even be able to quantify a risk percentage. For example, having two copies of a certain gene variant raises lifetime risk of developing Alzheimer’s disease as high as 87 percent.

Related: Half of cancer deaths do to bad habits

  1. Who will see my results?

Privacy continues to be a top concern as technology rapidly advances. Transparency and easy of accessibility are what companies are considering when making their privacy policies. According to the National Society of Genetic Counselors, before sending in your DNA, it is important to ask:

  • What do you plan to do with my genetic information?
  • Will it be shared with other companies, researchers, or databases?
  • Will my DNA be associated with my personal information?
  • Will the company alert me if my DNA is shared or if its privacy policy changes?

“It goes beyond the science and genetics and one should think about the societal and family implications. Talk to the genetic counselors before and after taking a genetic test. It is important understand the results since it can have implications for you and your family,” Maria C. Carrillo, chief science officer, Alzheimer’s Association

Different state and federal laws exist, such as the Genetic Information Nondiscrimination Act, that prohibit employers from discriminating based on genetic information. The Affordable Care Act also offered protections against health insurance companies from discriminating based on genetic testing results.

However, as health care legislature continues to evolve, it will be imperative to keep an eye on new policies.

Mary Freivogel, president of the National Society of Genetic Counselors Board of Directors, notes that there are currently no federal laws relating to protections for life insurance, long term care insurance, or disability insurance.

  1. What will I do once I have the results?

Just as experts recommend seeking advice from a genetic counselor prior to testing, it is probably more important to have a professional weigh in once the results are back. They can help you interpret the implications of your genetic risk, understand what you can do to prevent or monitor for early signs of the disease, and how you should discuss your results with relatives who have similar DNA.

“It goes beyond the science and genetics and one should think about the societal and family implications,” says Carrillo. “Talk to the genetic counselors before and after taking a genetic test. It is important understand the results since it can have implications for you and your family.”

If you are considering sending off you saliva here are additional resources about genetic testing to help inform your decision.

This holiday season, many families will get the chance to dive into their genetic history through at-home DNA kits, but Sen. Chuck Schumer is warning that such kits may put your privacy at risk.

DNA kits like AncestryDNA and 23andMe were top sellers on Amazon this Cyber Monday and have seen thousands of sales on the retail site in the past two years. Ancestry’s sales swelled to nearly 1,300 kits a day on Amazon by late 2016, the company told CNBC, and the kits were expected to be a popular gift for the holidays.

The kits make it easy to see your genetic lineage, but those getting their DNA tested aren’t the only ones to see all that information.

Schumer said this week that at-home DNA testing puts consumer privacy at “great risk,” because the companies conducting that testing don’t always disclose to their customers exactly what they are doing with your DNA. He’s calling for a Federal Trade Commission investigation into the privacy policies of such kits.

Keven Moore works in risk management services. He has a bachelor’s degree from University of Kentucky, a master’s from Eastern Kentucky University and 25-plus years of experience in the safety and insurance profession. He lives in Lexington with his family and works out of both the Lexington and Northern Kentucky offices. Keven can be reached at kmoore@roeding.com.

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