The FDA has approved the first direct-to-consumer DNA test for cancer risk. Offered by 23andMe, results include genetic health risk reports on BRCA1- and BRCA2-related genetic risk for breast, ovarian and prostate cancer.
DNA testing company 23andMe recently announced an important new addition to the personal health reports that come with itsHealth + Ancestry test(which retails for $199, compared to its Ancestry-only test): cancer risk.
DNA test for cancer risk
Effective immediately for existing and new testers, 23andMe “will report on three variants in the BRCA1 and BRCA2 genes associated with a significantly higher risk of breast and ovarian cancer in women, and breast cancer in men,” states a company press release.
Anne Wojcicki, 23andMe CEO and co-founder, calls the 23andMe reports “potentially life-saving information,” especially for those with Ashkenazi Jewish ancestors, who are at greatest risk for having one of the reported variants. According to the press release, about 1 in 40 people of Ashkenazi Jewish descent has one of these variants: “Women with one of these variants have a 45-85% chance of developing breast cancer by age 70.”
The company emphasizes that this information doesn’t replace regular cancer screenings or other recommended health care. Most cancers aren’t hereditary to begin with, and genetic screenings don’t capture all the possible genetic variants related to cancer risk.
Customers who purchase the23andMe Health + Ancestry testmust select whether they want to receive this health report as part of their results. This is consistent with all their genetic health risk reports, which include Celiac disease, Parkinson’s disease, late-onset Alzheimer’s and several others (click hereto read more about 23andMe’s health reports). Customers also receive an “education module” to help them fully understand what they can learn from this report and how to use the results.
The press release points out that currently, those recommended to be evaluated for genetic risk of cancer are primarily those with a known “personal and/or family history of certain cancers.” Butrecent medical findingsshow that 50% of families with BRCA1 or BRCA2 genetic mutations had no known family history. 23andMe reports similar results in their test population: “Of those BRCA carriers who gave family medical history, about half reported no history of cancer in first-degree relatives. 23andMe has also observed that many of its customers for whom Ashkenazi Jewish ancestry was detected did not self-report any Jewish ancestry.” The concern: lack of awareness of genetic risk could prevent critical screenings and monitoring.
Health and wellness reports are, for many genealogists, one more compelling reason to participate in DNA testing. Family history, after all, encompasses family health history, too!
More on DNA tests for health information
Your DNA Guide Diahan Southard keeps Genealogy Gems readers up-to-date with the broader conversation about DNA testing and your family history—including health reports. Keep reading and learn!
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Plenty of DNA testing news crossed our desks in 2017! Advances in genetic genealogy include an AncestryDNA database that doubled in size, new options for participants, more health-related information and a new global genetic tree. Catch up on these developments before 2018 brings us even more DNA news!
DNA Testing News in 2017
The genetic genealogy industry is growing at a break-neck pace. Ancestry.com has amassed the largest DNA database by doubling its testing pool in 2017. Over 6 million people have now tested there. This is great news for those seeking genetic connections. As these databases grow larger, it’s also clear that genetic data–correlated with genealogical data–has tremendous ability to provide us with other answers about ourselves.
In November, MyHeritage announced an effort by their scientific team to “study the relationship between genetics and behavior, personal characteristics, and culture.” These studies are not new, as 23andMe is in open hot pursuit of the connections between genetics and our health, and always has been.
Increased options for your DNA testing experience
All of our genetic genealogy companies are involved in research on one level or another and every person who swabs or spits has the opportunity to participate in other research projects (click here to read up on the consent policies at each company). At the time of testing, you have the option to opt in or out of this research, and the ability to alter that decision at any time after you test, by accessing your settings. According to an article in Fast Company, it seems we as a community are very interested in helping with research: 23andMe reports an over 80% opt-in-to-research rate among their customers. And I’ve got some breaking news for you: Family Tree DNA recently ran a consumer awareness campaign to reinforce the message that they will never sell your genetic data.
Health data and research
All our genetic genealogy companies realize that you might want to do more with your data than just look for your ancestors. This year Family Tree DNA has partnered with Vitagene in an effort to provide insight into your health via your genetic genealogy test results. Of course 23andMe is the leader in health testing when we look at our top genetic genealogy companies. This year 23andMe finally succeeded in passing several of their health tests through the FDA, a huge leap forward in their efforts to provide health testing directly to consumers.
While health testing has certainly seen an explosion of interest this year, it is not the only way that our companies are using the data they have amassed. AncestryDNA took the DNA and pedigree charts of two million customers who consented to research and, using some really fancy science, were able to provide amazing insight into our recent ancestral past with the creation of their genetic communities. These genetic communities enhance our understanding of our heritage by showing us where our ancestors may have been between 1750 and 1850, the genealogical “sweet spot” that most of us are trying to fill in.
A global genetic family tree
Living DNA, a relative newcomer to the genetic genealogy arena, announced in October of 2017 their intention to use their database to help create a One World Family Tree. To do so, they are collecting DNA samples from all over the world, specifically those who four grandparents lived in close proximity to each other. Along with this announcement, Living DNA is allowing individuals who have results from other companies and want to help with this project, to transfer into their database.
So it seems that with growing databases come growing options, whether to opt-in to research, to pursue health information from your DNA test results, or to help build global databases for health or genealogy purposes. Recognizing the growing appeal to non-genealogists as well, AncestryDNA added to their list of options the ability to opt-out of the match page, and there are rumors that Living DNA will soon be adding the option to opt-in to matching (they do not currently have a cousin-matching feature as part of their offering).
Keep up with DNA testing news
It can be tricky to keep up with the seemingly relentless flood of DNA advances, so follow us here at Genealogy Gems, where I report on the most important DNA testing news for your genealogy research. You can stay up-to-date by following us on Facebook, subscribing to our free weekly e-mail newsletter and tuning in to the free Genealogy Gems Podcast.
The Author: Diahan Southard
Your DNA Guide
Diahan Southard is Your DNA Guide here at Genealogy Gems! She has worked with the Sorenson Molecular Genealogy Foundation, and has been in the genetic genealogy industry since it has been an industry. She holds a degree in Microbiology and her creative side helps her break the science up into delicious bite-sized pieces for you. She’s the author of our DNA guides Getting Started: Genetics for Genealogists, and Y Chromosome DNA for Genealogists (click STORE in the menu above)
Disclosure: This article contains affiliate links and Genealogy Gems will be compensated if you make a purchase after clicking on these links (at no additional cost to you). Thank you for supporting Genealogy Gems!
A Vitagene Wellness Report is now available to Family Tree DNA customers. The $49 report just takes a week and promises personalized recommendations for your nutrition, exercise, and supplements based on your genetics and lifestyle. Here’s what Your DNA Guide Diahan Southard has to say about it.
Recently, Family Tree DNA offered its customers a new $49 add-on product: a wellness report that promises to “empower you to make more informed decisions about your nutrition, exercise, and supplementation.” The report comes via a partnership with Vitagene, a nutrigenomics company.
How does it work? When you order the report, Family Tree DNA shares the results of your Family Finder test with Vitagene and gives you a lifestyle questionnaire. According to the site, “this information, along with your DNA raw data results, will be analyzed using the latest research available in the areas of nutrition, exercise, and genomics. You can expect your results to be available on your dashboard within one week of purchase.”
At this point, the test is only available to those who have taken the Family Tree DNA Family Finder DNA test (we called to check with them specifically about those who transfer their DNA to Family Tree DNA, but the Wellness Report isn’t available to them, either). Those who qualify will see a Wellness Report upgrade option on their Family Tree DNA dashboard, as shown below:
What’s included in the Vitagene Wellness Report?
There are several components to the Family Tree DNA and Vitagene Wellness Report. The site describes them as follows:
Nutrition Report. “Personalized, actionable recommendations designed to help you reach your weight goals. Learn how your DNA affects traits such as obesity risk, emotional eating, weight regain after dieting, and more. Included Reports: Obesity Risk, Alcohol Metabolism, Cholesterol Levels, Triglyceride Levels, Lactose Sensitivity, Gluten Sensitivity, Emotional Eating, Weight Regain After Dieting, Fat Intake, Sodium Intake.”
Exercise Report. “Outlines the optimal physical activities for your body to start seeing better results, faster. Included Reports: Power and Endurance Exercise, Muscle Strength, Muscle Cramps, Exercise Behavior, Blood Pressure Response to Exercise, Weight Response to Exercise.”
Supplementation Report. “Reveals which deficiencies you are more inclined to suffer from and recommends a supplement regimen that will help keep you healthy and feeling 100%. Included Reports: Full Supplementation Regimen, Vitamin D Intake, Vitamin A Intake, Folate Intake, Vitamin B12 Intake, Iron Intake.”
And what about your privacy? According to Family Tree DNA’s Q&A, “Your data is 100% secure and protected by industry standard security practices. We will not share your information without your explicit consent.”
A Little More about the Vitagene Wellness Report (and Others Like It)
This is just one of many services that are cropping up or will crop up in the future to offer additional interpretations of our DNA test results. (23andMe was the first major company in the genealogy space to offer these–click here to read about their health reports, and click here and here to read about the company’s long road to FDA approval.)
Essentially, each DNA test you do for family history looks at a certain number of your SNPs, or little pieces of DNA (not your entire genome, which is costly and isn’t necessary for genetic genealogy purposes). A nutrigenomic profile compares your SNPs with SNPs known to be associated with various conditions or ailments. (These genetic markers have been identified by researchers, many in academia, and deposited in ClinVar, a large, publicly-accessible database that itself is part of an even larger genetic database, SNPedia.) In this case of Vitagene, they are likely mining ClinVar for specific places in your DNA that pertain to nutrition, and were also evaluated as part of the Family Finder test.
Of course, many factors affect your health, nutrition, exercise capacity, and other wellness indicators, not just your genes. The purpose of reports like these is to give you just one more piece of information to weigh personally or with your health care provider.
When considering whether to purchase a nutrigenomics report such as this, I’d look carefully at what’s promised in the report, as well as the company providing it and the cost. Vitagene does also sell vitamin supplements, so they have a clear motivation to tell you about what supplements to take. And, for your information, Vitagene also offers this $49 health report for AncestryDNA and 23andMe customers.
Keep Reading: My Picks for DNA Health Reports
Of course, if it is health advice you want, for only $5 you can turn to Promethease.com and receive a health report–based on any testing company’s autosomal DNA report–that includes some nutritional factors. Or, I will just tell you right now, for free, without even looking at your DNA: Exercise more and eat more green vegetables and less ice cream. There. I just saved you some money. You’re welcome.
I’ve blogged recently about Promethease and another inexpensive recommendation for DNA health reports. Click here to read it!
DNA health reports are becoming a more common option for those who test their DNA for family history. Should you order a DNA health report? Here are the ones Diahan Southard recommends most. Her top pick is inexpensive, available to all testers, and promises confidentiality for your genetic data.
DNA Health Reports May Have Saved a Life
At Rootstech 2017 I was sitting at my booth answering questions and talking with many of you about your experience with genetic genealogy. A woman came up to the booth and exclaimed, “You saved my son’s life!”
She went on to explain that she had come across my booth at a previous RootsTech and engaged me in a discussion about using this kind of genetic genealogy test to find out more about a person’s health. I explained that while the focus of these genetic genealogy companies is to further our ancestral research, the DNA that they test does contain some health information. In fact, 23andMe used to offer a full health report as part of their service, but the FDA decided they better regulate that sort of thing, and put the kibosh on it. I told her that while 23andMe is slowly edging back into that arena, you can find out some interesting personal health information today, using the results from any of your genetic genealogy testing company.
How to Get DNA Health Reports
1. Download your results. The first step is to download your raw DNA data from wherever you were tested. Just as Lisa Louise Cooke is always encouraging us to be the owners of our own family tree data, we should be the owners of our own genetic data, too. Save a copy of your raw data to your computer. You can find instructions here on my website.
2. Choose a DNA health report provider and upload your DNA. A growing number of companies offer these reports. Within the genealogy industry, 23andMe sells them and recently Family Tree DNA began offering them to existing customers (more on that coming soon).
But the DNA health report provider I recommend the most is Promethease.com. Their service is available to anyone with a DNA sample–you don’t need to test with any specific company. It’s easy and inexpensive: just $5. This report will tell you about various aspects of your health, including your predisposition to certain diseases and ailments, as well as your likely response or sensitivity to certain drugs. And the site promises confidentiality and impartiality, which are crucial in this age. The Privacy statement reassures users, “At no time is your DNA data shared – or sold – to any external party, period. We also do not sell any products like vitamins or supplements.”
Editor’s note: the following paragraph was updated on January 3, 2018: Promethease now offers the option to keep your raw DNA on the site and obtain updated health reports for free at any time. Click here to read more about these options. An email sent to Promethease customers on January 3, 2018 explains, “We added this infrastructure so we could use de-identified stored data to better assess the accuracy of the raw data produced by different companies, platforms and technologies. This will also allow us to provide the best, independent assessment of true vs. false data in future Promethease reports and add new features.” The email also reminded users that updated reports are valuable because the genetic database that fuels the reports “doubles almost every year, and Promethease’s interface is always improving to enable better searching, filtering and exporting options.”
Here’s a screenshot of part of a sample report:
If you would like to read more about Promethease, I suggest reading over the ISOGG wiki page, paying special attention to blog posts by legal and genetic genealogy experts. There is also a Facebook group to ask and answer questions about Promethease.
One more option for DNA health tests that I want to bring to your attention: Livewello. At Livewello you can combine your own personal exploration of your genetics with the tracking of your family’s health. Livewello offers resources about these ailments and predispositions, as well as support groups and chat rooms for you to explore and ask questions. It does have a fee of $19.95 to join, and some of the feature reports do require a monthly subscription fee.
3. Remember that DNA health reports are in their infancy. It is critical to remember that research hasn’t even begun to scratch the surface of the complex way our genetics interact with other factors in order to make our bodies work. So whatever you see on these kinds of reports, take it for what it is: just information, not some kind of crystal ball. If you see something concerning, you may want to consider talking to a genetic counselor.
This woman at my booth found out some interesting information on Promethease, then consulted the professionals already involved in her son’s care, ultimately changing the course of his treatment, and she believes, saved his life.
As more and more people get genetic testing completed, more and more tools are becoming available to track your personal health history. Whatever you decided to do, please remember that your raw data contains your own personal information that does identify you uniquely from anyone else on the planet. While you shouldn’t be afraid to try new tools and explore your personal genomics, it is very important to read the privacy information of each company carefully to be sure you know what you are consenting to when you are uploading your data. Most companies are fastidious about privacy, but many are also involved in research endeavors, including pharmaceuticals, so please be aware before you upload.
As the genealogists in the family, we are the keepers of many important truths and documents, and certainly, that includes our important health information.
Your DNA is Part of Your Story
Watch this free webinar with Your DNA Guide Diahan Southard to learn more about the role your DNA plays in your story. Get inspired, get informed–and get digging into your DNA! Click on the video below to watch it now.