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Mailbox Genetics

Just about everyday we see advertisements from Mail order companies marketing risks of genetic disorders, or late-onset Alzheimer’s. Well, for about $100 and a vial full of saliva, you can find out if Parkinson’s is climbing your family tree via a mail-in testing kit.  After a new ruling from the U.S. Food and Drug Administration (FDA), consumers can bypass doctors for the first time, to learn if they have a genetic risk for 10 diseases. Have you wondered about your Genetics & want to know more?. . . here goes.

What is genetic testing?

Genetic testing is a type of medical test that identifies changes in chromosomes, genes, or proteins. The results of a genetic test can confirm or rule out a suspected genetic condition or help determine a person’s chance of developing or passing on a genetic disorder. More than 1,000 genetic tests are currently in use, and more are being developed.Several methods can be used for genetic testing:

  • Molecular genetic tests (or gene tests) study single genes or short lengths of DNA to identify variations or mutations that lead to a genetic disorder.
  • Chromosomal genetic tests analyze whole chromosomes or long lengths of DNA to see if there are large genetic changes, such as an extra copy of a chromosome, that cause a genetic condition.
  • Biochemical genetic tests study the amount or activity level of proteins; abnormalities in either can indicate changes to the DNA that result in a genetic disorder.
  • It’s simple: order, spit, ship, and wait.

Because testing has benefits as well as limitations and risks, the decision about whether to be tested is a personal and complex one. A geneticist or genetic counselor can help by providing information about the pros and cons of the test and discussing the social and emotional aspects of testing. This type of testing has been in the news for years, often as part of criminal trials or paternity suits. Doctors and medical researchers have long used genetic testing to diagnose ailments and assess disease risks. But the FDA had been wary of allowing consumers to take matters into their own hands. Does the science support consistent links between certain genetic variants and diseases? And can consumers understand the key concepts in the test reports they get back?

Planning for the future.

Knowing your genetic predisposition does allow you to make key changes – diet, exercise, preventive medical testing and care. “DTC tests seem to intrigue people, teach people, even motivate them to improve their health,” says Robert C. Green, a professor of medicine at Harvard Medical School and geneticist at Brigham and Women’s Hospital in Boston.  Erica Ramos, president-elect of the National Society of Genetic Counselors, recommends seeking out a professional if you have a concern about a condition that may run in the family. Ask your doctor for a recommendation, or check out FindaGeneticCounselor.com. These discussions may be covered by insurance.

AARP Bulletin Executive Editor Michael Hedges took the 23andMe test and found it gave him peace of mind. “I’m relieved to know I am free of the Alzheimer’s and Parkinson’s genetic variants,” he says.  The other conditions tested are – celiac disease; alpha-1 antitrypsin deficiency, which raises the risk of lung and liver disease; early-onset primary dystonia, a movement disorder; factor XI deficiency, a blood-clotting disorder; Gaucher disease type 1, an organ and tissue disorder; glucose-6-phosphate dehydrogenase deficiency, a red-blood-cell condition; hereditary hemochromatosis, an iron disorder; and hereditary thrombophilia, a blood clot disorder.

Companies offering mail-in genetic testing.

23andMe

What it tests: The ancestry test helps you discover your origins. The health test determines info such as your carrier status (whether you carry a specific copy of a mutated gene) for 40-plus conditions, as well as your risk of developing 10 diseases based on genetic markers.

How it’s administered: A saliva sample, which you mail to the lab.  – Price:  From $99 to $199.

Ancestry DNA.

What it tests: AncestryDNA testing technology revolutionizes the way you discover your family history.

How it’s administered: A saliva sample, which you mail to the lab. – Price: $99

Family Tree DNA 

What it tests: Provides in-depth DNA analysis of your family roots.

How it’s administered: A cheek swab, mailed to the lab. Results are shared with you online. – Price:  From $89 to $556.

Pathway Genomics 

What it tests: The company offers two direct-to-consumer tests, including one (FiT iQ) that provides insight into how your DNA influences your body’s response to diet and exercise.

How it’s administered: A saliva sample, mailed to the lab.  Pathway Genomics also offers a 50-minute consultation with a registered dietitian for $99.  – Price: $124

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 privacy policy change?

Different state and federal laws exist, such as the Genetic Information Nondiscrimination Act, which prohibits 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 what new policies come forth.

Who Has a Claim to Your DNA?

Does someone have a right to know if their aunt has a genetic condition they might also have inherited, even if she wants to keep it private? What obligation does the aunt, or the doctor who treats her, have to share this information with relatives who might be at risk?  At the heart of these ethical debates is a question about the ownership of our genes: Does your genetic profile belong solely to you, or do family members who share parts of your DNA have some claim to it?  How about the company that did the testing, do they have the right to store or keep your information?

The government has yet to establish laws that set clear precedent with regards to ownership of biological property. The existence of this legal “grey area” however does not mean that courts have not heard cases involving DNA/tissue ownership. In fact, of those cases presented in court, most rulings have been against the patient. The interpretation of the courts is that once the DNA/tissue leaves the body, it is no longer the property of the individual. The courts seem to be relying on the informed consent contracts that patients sign prior to any procedure, which establishes clear guidelines for the future ownership of said materials. In other words, we do NOT really know, and some of us sign away our rights!  Not knowing who has access to your DNA test results should be of great importance to everyone. Buyer Beware!!!

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 ** Disclaimer: This post is an FYI. It is not my intention to offer Medical, Technical or Consultant advice and urge you to consult the professionals who excel in their field of expertise **
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7 Comments

  • Reply nerline

    This is very good information, but I would be worried about my information being out there like that. I think I’ll just wait for my yearly check-up. I hope the postage will be paid by the addressee. Thanks for sharing, Neti!

    10/23/2017 at 12:29 pm
  • Reply Oh to Be a Muse

    I’ve actually done the Ancestry DNA test and thought it was really cool. I haven’t tried any of the other ones though. The Ancestry test was helpful because it told me which countries I was from in Africa — and also that I’m part Scandinavian. But it was nice to know that just that I’m originally from Africa (because, duh), but the specific countries as well.

    10/23/2017 at 12:34 pm
    • Reply Neti*

      I would like to know about my heritage too, but not trusting these sites. Thanks Bunches.

      10/24/2017 at 10:31 pm
  • Reply Falasha

    My husband and I did Ancestry DNA and it was really cool and so interesting. We would have never known our results and now we have some history to share with our son. I would love to dig deeper and find out more.

    xoxo Falasha
    Bite My Fashion
    Instagram| Bloglovin’| Facebook

    10/23/2017 at 4:02 pm
    • Reply Neti*

      Thanks a Bunch.

      10/24/2017 at 10:31 pm
  • Reply Chic Therapy

    Very insightful post. I had never even thought of the legal implications of these DNA tests, or the privacy clause surrounding them. Great points you raised.

    11/02/2017 at 2:38 pm
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