Mar 3, 2020

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We Have a Winner for Our Genetics Test Giveaway

Scot received two at home genetics testing kits last Christmas. He wanted to share his second test, but producer Mitch had already taken one, and Troy was adamantly against taking the test. He decided to give away his second test to one of our listeners. Seemed simple, but over the past month the Who Cares guys have been looking deeper into the realities of consumer genetic testing. What they've found is worth talking about.

The winner of the competition is listener Matt. Matt is a father with one young daughter and a son on the way. Matt wanted to take the test because he was curious about his genetic predisposition of certain health conditions and the likelihood of passing them on to his kids.

Karin Dent is a certified and licensed genetic counselor at the University of Utah. We brought Karin on to discuss with Matt the realities of consumer genetic testing and have a conversation about whether or not he still wanted to take the test.

You Cannot "Un-know" Your Genetics

The first question we asked Matt was whether or not he had read the terms of service for the genetic test. He had not. It was important to share one term that many people don't think about when it comes to their genetics:

Once you obtain genetic information, the knowledge is irrevocable. You should not assume that any information we may be able to provide you whether now or as genetic research advances will be welcome or positive. You may learn information about yourself you do not anticipate. This information may evoke strong emotions and has the potential to alter your life and worldview.

According to Karin, this is something a person should think about taking the test. The goal of genetic counselors is to help people understand the medical, familial and psychosocial implications of genetic data and how it can impact their health and overall well-being.

She explains to her clients they can't "unknow something." Once you learn you may be genetically predisposed to a health condition, you will always know that bit of information. It may change your life in ways you don't realize.

Karin says as a patient and consumer, you have the right to not know something just as much as you have the right to information about yourself.

A DNA Test May Not Provide the Answers You Seek

The main purpose of genetic counseling is to make sure the patient is fully aware of the limitations, benefits and risks associated with genetic testing. Many people are like Matt, and looking for a potential genetic predisposition they may have. Unfortunately, genetic tests today don't test for every single condition.

Karin suggests that if a person is wondering if there is a specific genetic condition you are curious about, make sure the test you are taking actually provides results for that condition. Tests may be limited in the diseases and conditions they test for. No test on the market covers everything. Additionally, most tests available will only provide results for a small subsection of known genetic factors that may contribute to developing a condition.

Your DNA is Not Your Destiny

Matt is specifically curious about conditions like Parkinson's disease as well as a predisposition to obesity and diabetes.

Most conditions these at-home genetics kits report on are complex conditions that form in adulthood. While there may be a research backed genetic predisposition for these conditions, lifestyle and environmental factors play a large role in whether or not a person will develop the condition.

"[The test] gives you an assessment," says Karin, "but it isn't a black and white result."

Despite how these tests are marketed, there is more involved in the development of a condition like obesity.. While a limited set of genes may suggest a predisposition, the diet and lifestyle of a person likely plays a bigger role in whether or not a person becomes overweight.

"One thing I like to tell everyone I meet with, patients, clients friends, is that your genetics is not your destiny." says Karin "Even if this came back and said you have an increased risk or there's an increased association with obesity based on the genetic factors that you have, remember, that is only a small subset of the genetic contributions we know currently that contribute to obesity."

There's a limitation on the information genetics test can provide. The results are not - and should not - guide your healthcare plan. These test results should not replace routine healthcare screenings. Just because your genetic results say you have a reduced chance of developing prostate cancer, that doesn't mean you should stop getting your screenings.

As such, some professionals have begun to refer to direct-to-consumer genetic testing as "recreational genomics." Meaning, the results of the test may be interesting, but shouldn't guide how you approach your health.

You Are Ultimately Testing Your Whole Family

After getting your genetics results, you may be faced with not only a personal dilemma but an ethical one as well. If you found out you have an increased risk of a certain cancer, that can have a huge impact on your relatives too.

"When you take a test, you're testing a family," says Karin.

It's rare that a genetics test will find something that only impacts one person. You share much of the same genes as your parents, siblings, and children. The results you receive may be present in others. Some members of the family might not want to know. On the other hand, if you find something is there an obligation to tell the rest of the family? It's important to consider what you are willing to share with these people, and how it will impact them

Matt has had discussions with his wife about how this information may impact their family. She might have to deal with his genetic results as a wife, and as the mother of their kids. The two of them have discussed how they would approach those topics as a family. He is also considering how he will share his results with his brother.

There Currently Isn't a "Professional" Option

Direct to consumer testing is unique in the genetics world because it is a test that targets healthy people. These tests are often marketed as a way to keep healthy people healthy by giving them knowledge about themselves so they can take the steps necessary to prevent different health conditions.

Clinical genetic testing isn't typically for "healthy" people. Clinical testing is used to find the cause of a severe health condition or birth defect already present in a patient. There currently isn't a readily available clinical test for healthy people who are merely curious about their genes.

There are "adult healthy screens" available in some clinical settings, but these are often very specific tests that are screening for specific conditions for rare circumstances.

With this in mind, genetic counselors do not typically suggest getting an at home test due to the limitations of the information these tests can provide. Consumer genetics testing companies are ultimately targeting you as a consumer, not a patient.

There Is No Rush to Get Tested Today

Karin personally refuses to take an at-home genetics test despite her genealogically minded father's urging. For Karin, she feels there are too many limitations in the testing right now and the information it may provide is not of any value to her.

"[A direct-to-consumer genetics test] is not going to tell you anything that will change your life in a positive way," says Karin. She has met with people that have regretted what they have learned from these tests. They feel that it has changed a part of their life that they can't get back. There's a time before they learn something, a time after.

With that in mind, Karin explains that there should be no rush to go and get your DNA tested today. Unlike a lab value, your genes don't change. You will have the same genes five, ten, fifteen years from today. As genetic research advances there may come a time when the results given by genetics testing will be more valuable - and perhaps cheaper. There's no reason you can't wait to get the test later in your life.

Will Matt and Scot Take the Test?

After all of this discussion with a professional, it comes down to this: Will they still take the test?

Matt still wants to take the test. He has spent a lot of time considering the realities of this kind of testing. He understands the limitations. He understands he can't unknow his results. He knows his test will impact not just him, but his whole family.

But for Matt, he reasons that he's still young. Knowing his genetics may be able to help him better understand steps he can take moving forward in his own life. He's thought about what he would do with the information and his kids. He's making an informed decision about his genetics, and that's what Karin supports.

After spending the last few months considering it, Scot has decided he isn't going to take the test. For him, he was moved by Karin's discussion of not being able to "unknow" something. He works hard to live a healthy life. He has a good understanding of his family history. He feels that there is nothing the test will tell him today that would positively impact his life.

Scot may consider taking the test in the future, but he recognizes that there's no pressure to take the test today just because it's trendy.


Just Going to Leave This Here

On this episode's Just Going to Leave This Here, Scot challenges Troy to guess what's wrong with his ear and Troy hates shaving so much he jokingly considers laser hair removal.

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