23andMe

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Hollis Johnson
  • Consumer genetics company Color Genomics is rolling out services to test for genes linked to cancer and high cholesterol.
  • Vinod Khosla of Khosla Ventures announced the new feature at global health conference HLTH in Las Vegas on Sunday evening.
  • The announcement comes roughly a month after Color competitor 23andMe released breast cancer genetics results to consumers.
  • Color and 23andMe are taking different approaches, however. While 23andMe provides results directly to consumers, something experts have called “dangerous,” Color is partnering with universities who will make the tests available to patients alongside a counselor.

The eyes may be the windows to the soul, but spit is increasingly the portal to your health.

In an effort to give people information about everything from their ancestry to their genetic risk of developing diseases like Alzheimer’s and cancer, consumer genetics testing companies like 23andMe have been rapidly expanding their services.

On Sunday, another consumer genetics company called Color Genomics launched a plan to give people a peek at their genetic risk for two major conditions: hereditary cancer and high cholesterol.

The announcement was delivered by high-profile Silicon Valley venture capitalist Vinod Khosla of Khosla Ventures, who was speaking at global healthcare conference HLTH in Las Vegas and is one of Color’s investors.

Color’s move into cancer and high cholesterol comes on the heels of a recent decision by 23andMe to give customers information about some of their genetic risk for breast cancer.

But Color’s approach differs from 23andMe’s in at least one key way: rather than simply making the information available directly to the customer, Color is partnering with several universities so that patients of existing healthcare systems would be able to get their results only with the guidance of a physician or trained genetics counselor.

That last part is something outside experts say is key to avoiding endangering the health of consumers who could easily misinterpret their results.

The delicate business of disease genetics

Ancestry

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Sarah Kimmorley/Business Insider Australia

Disease genetics are highly complex. Having a genetic variant, or a mutation on a chunk of DNA, that amplifies your risk of a disease like cancer doesn’t necessarily mean you’ll develop it; similarly, not having the variant doesn’t necessarily mean you won’t.

But knowing whether or not you have a genetic tweak that’s linked with a disease like cancer can be powerful medicine – when that knowledge is delivered in the right way.

Catching a disease early or preventing it in the first place curbs deaths and medical costs.

But giving people access to this kind of information without doing it alongside guidance from a trained medical professional could have the opposite of the intended effect, John Witte, the program leader for the cancer genetics program at the University of California at San Francisco, told Business Insider last month.

A customer who finds out they have zero of the breast cancer tweaks that 23andMe currently tests for might wrongly assume they’re no longer at risk for the disease, Witte said. That could have the unfortunate result of making that person less likely to catch the disease earlier if they go on to develop it.

Color’s approach has expert support

Instead of solely releasing hereditary cancer and high cholesterol risk results to its customers, Color is partnering with four large universities – the University of California, San Francisco; the University of Chicago; the University of Washington; and Thomas Jefferson University – to make them available to patients at those institutions for free alongside a genetic counselor from Color or the institution.

That is an approach that outside experts have said they stand behind, as it essentially places the information behind a gatekeeper who can translate the results and advise on any necessary next steps.

The new Color initiative will look at two conditions where genetics play a key role: cancer – breast, ovarian, colorectal, and prostate – and high cholesterol, also known as familial hypercholesterolemia, or FH. Several genes are involved in the development of both conditions, while other factors like diet and exercise can play a key role, too.

Color is focusing on these two conditions first for several reasons. One is that the genes these conditions involve have been found to be closely linked with the risk of disease. Another is that well-defined preventive measures like dietary changes exist for both conditions, meaning that people who learn they are at higher risk for FH, for example, can take steps now to decrease their chances of developing it.

Color CEO Othman Laraki told Business Insider that the approach is one he stands behind.

“We want to focus on a few things with the highest quality possible and scale them, rather than going a mile wide and an inch deep on several,” Laraki said.

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Hollis Johnson
  • Investigators say they cracked the cold case of the Golden State Killer with help from data on a genetics website.
  • The investigators revealed that they uploaded a suspect’s raw DNA signature – sourced from an old crime scene sample – to a site called GEDmatch.
  • The case has raised privacy concerns among people who have submitted their DNA data to similar genetics sites.
  • Here’s how to delete your DNA and data from 23andMe, Ancestry, and Helix.

The recent arrest in one of California’s most infamous serial-killer cases was based in large part on a DNA sample submitted to a genetics website by a distant relative of the suspect.

If that news has you concerned about the security of your own genetic material, you may be wondering how to delete it from genetic databases kept by popular genetics testing companies like 23andMe and Ancestry.

Those two databases were not used by investigators to track down Golden State Killer suspect Joseph James DeAngelo. Instead, investigators used a service called GEDmatch, which lets customers upload a raw DNA signature. Investigators created a profile for the suspect using DNA sourced from a long-stored crime scene sample, and found matches between DeAngelo’s crime scene DNA and the DNA of a distant family member.

23andMe, Ancestry, and Helix (National Geographic’s genetics service) only accept saliva samples for genetics testing – an easy way of obtaining DNA. But a similar company called Family Tree DNA could likely accept hair or blood, according to Joe Fox, an administrator for one of the company’s surname projects.

Whichever way a company gets your DNA, privacy advocates say there’s cause for concern. Although genetic data is ostensibly anonymized, companies can and do sell your data to third parties like pharmaceutical companies. From there, it could find its way elsewhere, advocates say.

Here’s how to delete your data from a few of these services.

23andMe could keep your spit and data for up to 10 years

23andMekit

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23andMe Instagram

The core service provided by most commercial genetic tests is built on the extraction of your DNA from your spit – that’s how you get the results about your health and ancestry information.

After registering your spit sample online with 23andMe, the company will ask if you’d like your saliva to be stored or discarded. But you are not asked the same question about your raw genetic data – the DNA extracted from your spit.

Based on the wording of a document called the “Biobanking Consent Document,” it’s a bit unclear what happens to that raw DNA once you decide to have the company either store or toss your spit.

Here’s the statement’s exact language:

“By choosing to have 23andMe store either your saliva sample or DNA extracted from your saliva, you are consenting to having 23andMe and its contractors access and analyze your stored sample, using the same or more advanced technologies.”

That leaves a bit of a grey area as far as what 23andMe has the ability to keep, and how they can use your DNA information. If your spit or DNA sample is stored, the company can hold onto it for between one and 10 years, “unless we notify you otherwise,” the Biobanking Consent Document states.

Still, you can request that the company discard your spit. To do so, go to its Customer Care page, navigate to “Accounts and Registration,” scroll to the bottom of the bulleted list of options, and select the last bullet titled “Requesting Account Closure.”

Once there, you must submit a request to have your spit sample destroyed and/or have your account closed.

Ancestry won’t toss your spit unless you call, but you can delete your DNA results

Ancestry

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Sarah Kimmorley/Business Insider Australia

If you want to delete your DNA test results with Ancestry, use the navigation bar at the top of the homepage to select “DNA.”

On the page with your name at the top, scroll to the upper right corner, select “Settings,” then go to “Delete Test Results” on the right side column.

According to the company’s latest privacy statement, doing this will result in the company deleting the following within 30 days: “All genetic information, including any derivative genetic information (ethnicity estimates, genetic relative matches, etc.) from our production, development, analytics, and research systems.”

But if you opted into Ancestry’s informed “Consent to Research” when you signed up, the company says it can’t wipe your genetic information from any “active or completed research projects.” It will, however, prevent your DNA from being used for new research.

To have the company discard your spit sample, you must call Member Services and request that it be thrown out.

Helix will discard your spit upon request, but may keep data ‘indefinitely’

In its most recently updated Privacy Policy, Helix states that it may “store your DNA indefinitely.”

It also keeps your saliva sample, but you can request that it be destroyed by contacting Helix’s Customer Care via a request form that looks similar to 23andMe’s.

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Hollis Johnson
  • Genetics testing company 23andMe recently launched a feature that allows customers to share information about what treatments for 18 conditions – including depression and ADHD – do and don’t work for them.
  • Outside experts call the feature “concerning” and say it could mislead people or discourage them from getting the proper treatment.
  • The feature currently has more than 5,000 users, 23andMe says.

In a move that psychologists and psychiatrists are calling “concerning,” popular genetics company 23andMe launched an initiative earlier this month allowing customers to share tips about which treatments for conditions including ADHD and depression do or don’t work for them.

Since rolling out the feature, called “Condition Pages,” last week, 23andMe says it has attracted more than 5,000 customers who’ve contributed over 30,000 submissions on the conditions.

But experts warn that some aspects of the crowdsourcing initiative could be dangerously misleading and even discourage people from getting treatments that are recommended to them by physicians.

Although the pages are similar to what someone might find on Google or Reddit (in the sense that anyone can comment on them and share information), experts warn that they might carry a feeling of authority that could encourage some customers to believe that the content has been vetted by a scientist, physician, or researcher.

“There’s a worry with having that authority label,” Nancy Liu, an assistant clinical professor of clinical psychology at the University of California at Berkeley, told Business Insider.

A screenshot from 23andMe's condition page for depression.

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A screenshot from 23andMe’s condition page for depression.
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23andMe

Say a customer named Susie read on 23andMe’s condition pages that another customer named Brian tried cognitive behavioral therapy for his depression, and it didn’t work for him. Then say Susie stopped going to therapy.

That would be deeply concerning, Liu said.

“Disorders aren’t like that. What works for one person doesn’t always work for another.”

Cristina Cusin, a psychiatrist at Massachusetts General Hospital and an assistant professor at Harvard University, agreed. She is worried that customers may treat the condition pages similar to the way they’d treat a medical consultation with a physician, despite a disclaimer at the bottom which reads, “Keep in mind that this content is preliminary and meant for informational purposes only.”

There are other problems with the new feature as well, experts say.

One of them is what Liu calls selection bias. Essentially, “you self-select individuals who are engaging in this dialogue, which skews the type of information you receive, but it’s somehow viewed to represent all of individuals with a particular condition.”

Customers might assume that 23andMe’s pages provide provide a comprehensive look at everyone with depression or ADHD, when in reality, they only represent people with the condition who also had the time and interest to get online and discuss their condition with others.

Another issue is that the feature bundles all people with a condition like depression under the same label. The true nature of depression is much more complex than that, Liu said.

That recognition is vital to ensuring that people with a wide range of iterations of the disorder get the individualized treatment that works for them – whether it’s antidepressants, individual therapy, group therapy, or a combination of all three.

“One of the things we know about antidepressants is that how well they work depends on the type of depression someone has and on the severity of that depression. With something like this, that kind of fine-grained detail gets lost,” Liu said.

The “treatments” currently shown on the conditions pages are nowhere near exhaustive. Not all of them are necessarily considered treatments in and of themselves. While exercising and having a pet, for example, are near the top of 23andMe’s list of beneficial treatments, a tool like cognitive behavioral therapy, one of the best studied and most helpful treatments for depression, is not on the list at all.

Jesse Inchauspe, the product lead for 23andMe’s condition pages, told Business Insider that the thinking behind the project was that the company had useful information besides just genetics information to share with customers.

She said the company chose the 18 conditions that are currently listed, which include depression, ADHD, asthma, and high blood pressure, based on their commonality among 23andMe customers. The company did not consult with medical experts prior to rolling out the platform, Inchauspe said.

While the feature is currently only available to 50% of customers, the other half will have access to it this week, she said. Based on customer enthusiasm, she said that 23andMe plans to add more conditions in the near future.

“It’s always been our mission to give people access to as much information as possible,” Inchauspe said.

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Lydia Ramsey/Business Insider
  • “Direct to consumer” genetics tests have soared in popularity in recent years as the cost of genetics sequencing has plummeted.
  • AncestryDNA, Helix, and 23andMe are some of the companies offering the tests.
  • But 23andMe is the only one with approval from the Food and Drug Administration to include information about breast-cancer risk based on three mutations on the BRCA 1 and 2 genes.
  • Experts say a “negative” result on 23andMe’s test may be give some people a false sense of security that they are not at risk for the disease.

The eyes may be the windows to the soul, but spit is increasingly the portal to your health.

The consumer genetics company 23andMe recently got a green light from the US Food and Drug Administration to include information on breast-cancer risk in its online customer reports, based on screening for three of the multiple genetic mutations linked to the disease. But the new test could be dangerously misleading, according to several genetics experts in the industry who spoke with Business Insider about the new test.

23andMe is one of a handful of new companies offering spit-in-a-tube genetics tests that don’t require a doctor, also known as direct-to-consumer genetic testing. The tests have soared in popularity in recent years as the cost of genetics sequencing has plummeted.

According to 23andMe, the company has taken multiple steps to ensure that customers do not misinterpret their results. Still, experts say many people could be misled because they fail to read the so-called fine print.

The problem with 23andMe’s new test is simple, according to John Witte, the program leader for the cancer genetics program at the University of California at San Francisco. If you do 23andMe’s most recent genetics test and come up “negative” for the three cancer-linked mutations it screens for, you may believe your cancer risk is either low or nonexistent.

But it isn’t.

That’s something 23andMe clearly states in the report that will accompany the new test, Andy Kill, a representative for 23andMe, told Business Insider. The company’s report will include a mandatory eight-page “education module” that customers must complete before they can see their results. It contains the following statement:

“Women without a variant are still at risk of developing cancer. It’s important to continue with any cancer screenings your healthcare provider recommends.”

Despite all those warnings, Witte and other experts believe the test could still be troublesome – especially for people who don’t thoroughly read all of that information.

“There are many other genetic variants that are linked to breast cancer that wouldn’t be picked up by 23andMe’s test,” Witte said. “A ‘negative test’ just means you don’t carry one of the three mutations it tests for. That’s all it means.”

Angelina Jolie and the importance of genetic counselors

angelina jolie leg dress 2012 oscars

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Ethan Miller/Getty Images

23andMe’s latest test, which will be available to customers in the coming weeks, reveals whether you have a mutation on two genes that have been found to be closely linked to breast and ovarian cancer – also known as the BRCA genes.

The actress Angelina Jolie brought public awareness to the mutations when she made the decision to have her breasts and ovaries removed after testing positive for the BRCA1 mutation.

The problem with a genetics report coming without accompanying information from a doctor or genetic counselor, experts say, is that testing positive or negative for the mutations doesn’t reveal whether you’ll get breast cancer. It is merely one of several factors, including things like family history, ancestry, and lifestyle, that ultimately determine the development of the disease. To understand the next steps you should take, you should have a physician or a genetics counselor at hand, Witte said.

Jolie did not make the decision to have her breasts and ovaries removed solely because she carried the BRCA1 gene mutation, which interferes with how genes – the blueprint for the proteins that make up cells – function. As she wrote in a 2015 essay for The New York Times, Jolie also had a family history of breast cancer, and that strongly influenced her choice.

Normally, BRCA genes function as safeguards against cancer. They protect cells from growing out of control and developing into the disease. Healthy BRCA genes repair genetic errors that can occur when cells multiply, for example, which is why an improperly functioning or mutated BRCA gene – though rare among the general population – can sharply increase cancer risk.

It’s the job of a physician or genetic counselor to walk through all of this dense, complicated information with a patient.

“I hope the people who take this test have genetic counselors,” Witte said. “I hope people will at least go see their doctor.”

Other limitations of the new test

Because BRCA mutations are so rare among the general population, 23andMe’s new test holds real value only for people with Ashkenazi Jewish heritage, Pamela Munster, a professor of oncology at the University of California at San Francisco who is a coleader of the Center for BRCA Research, said in an email. For people with Ashkenazi Jewish heritage, the chances of inheriting the mutation are 10 times as high as they are for the general population, of whom only 0.25% have the mutation.

“If you’re Ashkenazi Jewish, those are the most common ones for that population, but I don’t know that that distinction is going to come through to the average person,” Witte said.

The new test does not address breast-cancer risk variants that are unusually common among members of other populations, such as people with Latino/Latina heritage, Witte added.

“I do know that in the Latino/Latina populations there are other variants linked with breast cancer risk. So the test isn’t going to be very informative for them. But the point is – will they know that it’s non-informative? That’s a concern.”

Kill, the 23andMe representative, said the new test underwent months of FDA review and was safe: “The BRCA-related report is in the same format as our other genetic health risk reports which have undergone extensive user comprehension studies submitted to FDA.”

A spit sample for a DNA test.

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A spit sample for a DNA test.
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Hollis Johnson
  • I tried DNA tests from 23andMe, Ancestry, and National Geographic to learn about my family’s history and my health.
  • The tests vary in terms of what information they provide and how precise they are.
  • I’m often asked which test I’d recommend. My answer boils down to one question: What do you want to get out of the test?
  • From migration patterns, to how much DNA you have in common to a Neaderthal, here’s what you can learn from each report.

I’ve sent my spit off for more genetics tests than anyone else I know.

The tests analyzed the DNA in my saliva to find out a host of different things about my ancestry and health.

Genetic testing companies have proprietary sets of data and various ways of analyzing information, so each one I tried offered a distinct approach. One provided details about my great-grand relatives, while others listed how much Neanderthal DNA I have.

Every so often, someone asks me which test I recommend. And my answer boils down to one question: What do you want to get out of the test?

Let’s compare three direct-to-consumer tests: AncestryDNA, 23andMe, and National Geographic’s Geno 2.0 test.

23andMe gave me a comprehensive picture of my health and ancestry that keeps growing

23andMe kit

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Lydia Ramsey/Business Insider

23andMe currently offers two versions of its test: The $199 version comes with health and ancestry components, whereas the $99 version just has the ancestry test.

To analyze your DNA, 23andMe uses a technique called genotyping. Humans have 3 billion base pairs of DNA in our genome – that’s a lot of information to sift through – so genotyping technology looks for specific parts of DNA and pieces them together.

The health reports can tell you information about your physical traits (like if you’re likely to have dimples or curly hair), wellness (how well you metabolize caffeine or if you’re a sprinter), and carrier status for certain genetic mutations.

The FDA now allows 23andMe to provide reports on a person’s genetic risk for certain diseases, including Alzheimer’s and Parkinson’s diseases. In total, the test now has more than 74 reports, and more get added all the time. I often get emails telling me that a new test is ready for me – recently I got one that looks at my genetic health risk for celiac disease.

With 23andMe’s ancestry reports, users have access to information about their ancestry composition (which geographic regions your genes align with), haplogroups (genetic populations that share a common ancestor), and Neanderthal ancestry. They also get access to something called a DNA Relatives tool, which 23andMe users can opt into to connect with other users and find out whether they have relatives in the system.

In February, 23andMe updated its ancestry reports to provide more specific regional information. My report used to specify just Scandinavian ancestry, but now specifies Norway as a country where my ancestors lived within the past 200 years. The company also maps out how many generations ago you may have had ancestors from a particular region. For example, I may have had a Finnish ancestor sometime in the mid-to-early 1800s or late 1700s, while my French and German ancestors date even earlier.

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23andMe

Verdict: If you’re looking at this test as a science experiment, using it as a way to get involved in research, or viewing it as a chance to learn about your genetic health risks, then this is a fit for you. (Though if you opt for the full test, there are some considerations patient groups and genetic counselors would like users to take into account.)

If you just want to know your ancestry percentages – especially now that they’re more exact – and how much Neanderthal variants you have, the $99 version is a good bet.

AncestryDNA connects the dots between you and your ancestors

AncestryDNA test box

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Lydia Ramsey/Business Insider

Ancestry’s test, as its name suggests, is all about family histories and genealogy. You won’t find health and wellness reports in its $99 test, but you will find information about where your family comes from and how that lineage connects you to potential ancestors.

Like 23andMe, Ancestry uses genotyping technology to analyze your DNA. The service also helps you link up your DNA test to a self-reported family tree.

There’s a lot to discover within that data – for example, I was matched up with ancestors dating back to the 18th century, and could explore how I was connected to them.

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AncestryDNA

If you simply want to know, say, what percent Scandinavian you are, Ancestry’s site makes it easy to focus on those numbers. Those who want to dig deep into family trees can do that as well. I would definitely consider purchasing this test for a relative who enjoys researching family history.

Ancestry has also added a DNA story element that maps out your ancestors’ migration patterns. My ancestors started moving to the Midwest in the US around 1825-1850.

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AncestryDNA

Verdict: If the idea of tracing your family tree through the generations and connecting with distant relatives gets you excited – but you’re less interested in health information – this is the test for you.

National Geographic’s test uses next-generation sequencing technology to inform its reports

Helix DNA 1

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Hollis Johnson

National Geographic has an ancestry test called Geno 2.0.

The test – which currently costs $99.95 but originally was $199.95 – is different from AncestryDNA and 23andMe in that it uses next-generation sequencing instead of genotyping technology.

Unlike genotyping, which just looks for specific parts of DNA and pieces them together, next-generation sequencing looks at only the protein-encoding parts of your genome, called the exome. The next-generation sequencing analyzes roughly 2% of those 3 billion base pairs.

The additional information this technique picks up could lead to new, more specific genetic testing features in the future, especially as our knowledge of the genome and exome continues to grow.

Helix DNA 5

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Hollis Johnson

Based on next-generation sequencing, National Geographic’s test provides three ancestry reports.

  • Regional, which tells you where your ancestors came from more than 500 years ago. This didn’t get into as many specifics in my case as AncestryDNA and 23andMe’s tests did.
  • Deep, which shows your ancestors’ migration patterns thousands of years ago.
  • Hominin ancestry, which tells you how much DNA you have in common with a Neanderthal.

The verdict: For what you get, the test doesn’t have nearly the range that other ancestry tests have. And when not on sale, it’s more expensive. National Geographic, however, says the revenue funds nonprofit “conservation, exploration, research, and education” efforts.

Privacy considerations

Another aspect to take into account when deciding which DNA test to take is the issue of privacy. The tests do, after all, deal with information that’s fundamental and unique to every individual.

In a blog post published December 12, the FTC recommended reading the fine print. “If you’re thinking about buying an at-home DNA test kit, you owe it to yourself – and to family members who could be affected – to investigate the options thoroughly,” it says.

James Hazel, a post-doctoral research fellow at Vanderbilt University’s Center for Biomedical Ethics and Society, has been looking into the privacy policies of consumer genetics tests. He said the FTC’s suggestion is very important.

“We are good at clicking ‘agree’ and not reading the terms of service,” he told Business Insider in December.

Questions to keep in mind when reading through the terms of service include:

  • Who owns your DNA?
  • Who gets to see your de-identified (not attached to your name) information?
  • How is the data that’s tied to your identifiable information used?
  • Can you opt out of giving research partners your genetic data?
  • Can you wipe your information after taking a test?

There are other ancestry tests I have yet to try

The DNA-testing field is exploding. In the past few years, the number of people taking DNA tests has picked up pace. More than 12 million people have had their DNA sequenced, and almost 10 million of those tests have happened since 2016. With that, there’s likely a growing number of tests emerging that I haven’t had a chance to try.

MyHeritage has a DNA test that’s currently going for $49 (originally $99). Its tests, like Ancestry’s, are focused on building family connections and trees.

Others, like FamilyTree DNA (which offers tests from $59) are also geared toward people who want to find genetic links to relatives.

Each company has its own methods, algorithms, and data, which is why the reports differ. Because the three main direct-to-consumer genetics tests are around the same price, you should go with the one that will answer your most pressing questions.

This post was originally published in April 2017 and has been updated to reflect changes to the DNA tests.

Me, submitting a sample of my spit for a DNA test. I didn't have to submit new saliva to get the updated results.

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Me, submitting a sample of my spit for a DNA test. I didn’t have to submit new saliva to get the updated results.
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Hollis Johnson

Back in 2015, I decided to send my spit to 23andMe, the company that sells direct-to-consumer genetics tests.

The test gave me information as varied as how much DNA I share with our Neanderthal ancestors, how much caffeine I most likely consume, and whether I may have a unibrow. It also let me know whether I’m carrying certain genetic variations related to diseases that could be passed on to kids.

In April of last year, the US Food and Drug Administration told 23andMe it could start providing reports revealing whether you have certain risk factors for developing diseases including Parkinson’s disease and Alzheimer’s disease.

A year later, the FDA gave 23andMe clearance to tell consumers about their risk of cancer – specifically about three BRCA1 and BRCA2 gene mutations that are associated with an increased risk in breast and ovarian cancer. The test has genetic counselors and scientists concerned, because there are thousands of mutations associated with the BRCA1 and BRCA2 genes and this test screens for only three of them most commonly found in people of Ashkenazi (Eastern European) Jewish descent.

The version of the test that includes the health reports costs $199, while the ancestry test alone is $99. Here’s what it was like:


I first received my 23andMe test in 2015. Because I had already submitted my sample, I didn’t have to repeat the process to get my reports on health risks in 2017 or on BRCA mutations in 2018.

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Lydia Ramsey/Business Insider

That meant I didn’t have to resubmit a sample of my saliva, which was convenient. Spitting into the tube had taken me about five minutes the first time around.

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Lydia Ramsey/Business Insider

Before I shipped my spit, I registered online. I also got to decide whether I wanted to have my DNA used to research treatments for diseases. In the spirit of science, I decided to consent and sign the form.

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Lydia Ramsey/Business Insider

When I got my original report in 2015, I had 62 reports waiting for me based on my 23 pairs of chromosomes from mom and dad. The reports covered everything from family history to physical traits and genetic variants related to diseases that I could pass down to my kids.

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Lydia Ramsey/Business Insider

When I logged in to my 23andMe account in 2018, I was surprised to see that the number had increased to 81 (this is including the genetic-health-risk tests I opted into).

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23andMe

The new reports are available only to 23andme customers who had tests done on the company’s newest genotyping chip. That’s the vast majority of customers who were tested by late November 2013, according to a 23andme spokesman.


Of course, I still had the basics, such as my ancestry breakdown. This time, my results were even more specific, breaking down my Scandinavian ancestry into my Norwegian heritage specifically.

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23andMe

Learn more about ancestry tests.


Notably, more wellness reports were available than was the case when I most recently checked. In 2015, I spent time investigating my muscle composition, which told me I wasn’t a sprinter.

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Lydia Ramsey/Business Insider

Now, however, there were reports about my sleeping and eating habits. When it came to the genetics behind my weight, my results weren’t entirely unexpected — I had gotten the same results from another DNA test I took.

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23andMe

Review of Pathway Genomics Fit test.


Back when I first took the test, the most controversial part was the carrier-status test, which tells me whether I carry a variant that could be passed down to my children, resulting in a genetic disease. These were the tests the FDA needed to approve. 23andMe was very thorough in its presentation here, making it clear that the tests couldn’t be used to inform my own health.

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Lydia Ramsey/Business Insider

But in 2017, I had access to my genetic health risks, which could tell me whether I personally had an increased risk of getting certain diseases, including Parkinson’s and Alzheimer’s. My heart pounding, I clicked on a link that took me to the reports. Not everyone has to get the test. If you’re not ready, you can select “ask me again later,” and if you really never want to see the results, you can opt out entirely.

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23andMe

You can also choose to opt out of just the Alzheimer’s and Parkinson’s reports. Because the two neurodegenerative diseases have few treatments, getting the report could cause more anxiety than necessary.

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23andMe

On these two, I opted to defer. I made the decision after speaking with representatives from patient groups in 2017, who clarified what the reports could tell me and what I might want to do before looking at them.

For both Parkinson’s and Alzheimer’s, age is a bigger risk factor than genetics. With Parkinson’s, if I had a variant related to the disease, my risk of getting the disease would certainly be increased, but not by much.

Keith Fargo, the Alzheimer’s Association director of scientific programs and outreach, told Business Insider in 2017 that the Alzheimer’s report, which would tell me whether I had a mutation on my APOE gene, was more useful in the context of research than it was for predicting who might get the disease. And as I mentioned, I had allowed 23andMe to use my DNA for research purposes, so it was already getting put to use.

I also kept in mind my family history of one of these diseases. If I decide to view my results, I will plan on speaking with a genetic counselor before proceeding.

Another factor I noted was life insurance, something 23andMe’s report brings up as well. While genetic testing can’t prevent you from getting health insurance, life-insurance policies can use the information to deny your application. Since my results won’t be changing, I decided it would make the most sense to wait to get the results until I get life insurance. As long as I don’t know, there shouldn’t be a way for life insurers to find out.


Had I decided to see my results, 23andMe would have asked once more whether I was sure. This would have spelled out what exactly the risk window would be. If I had the highest risk, I’d have a 60% chance of developing Alzheimer’s by 85. Right now, roughly one-third of people over 85 have Alzheimer’s.

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23andMe

Had I chosen to see my Alzheimer’s results, they may look like this.

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23andMe

When I logged back in in 2018, I saw that there were now three health reports to choose from. Because I had fairly good reason to believe that I wouldn’t have one of the three variants, I decided it wouldn’t be a big deal to click through and see my results for that test.

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23andMe

When I spoke with a genetic counselor about this, she told me her bigger concern was that if someone of Scandinavian descent (like me) tested negative but did have a family history of breast and ovarian cancer, the person may not fully understand that he or she still could have a mutation, just not in the three tested. So I paid close attention to a paragraph explaining that the results of the report didn’t mean my risk of cancer was reduced.

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23andMe

Read more about the concerns over 23andMe’s cancer genetics test.


Cancer is a complex condition, and it can be caused by numerous factors — genetics being just one part of that. Should I have a mutation on BRCA1 or BRCA2 (identified by this test or elsewhere), the presence of a mutation doesn’t necessarily mean I have cancer, just that the chances are higher. For example, in the US, the average woman has a 7% of chance of getting breast cancer by age 70. That escalates to 50% if the woman has a mutation to her BRCA1 or BRCA2 genes. As part of my BRCA tutorial, 23andMe explained how different factors increase cancer risk.

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23andMe

Source: CDC


Further down the page on my BRCA results, there are resources for how to communicate the information to family members and physicians and how to get in touch with a genetic counselor.

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23andMe

Here’s a resource for finding a genetic counselor.


Afterward, I checked out my other genetic-health-risk reports. My results for Alpha-1 antitrypsin deficiency and celiac disease showed up on the same page as my BRCA results. On this page, I could also revisit whether I wanted to see my Parkinson’s or Alzheimer’s results.

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23andMe

The takeaway: It was fascinating to pop back in to my account and see new reports. I feel grateful that I don’t have to see my Parkinson’s disease and Alzheimer’s disease results, but I can still choose to check out my BRCA results — albeit with the big caveat that they’re likely to be negative anyway. Either way, it was fun to check in on my Neanderthal results.

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23andMe