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.
The first step is to download your results (called your raw data) from wherever you were tested. Just as Lisa is always encouraging us to be the owners of our own family tree data, we should be the owners of our own genetic data. Save a copy of your raw data to your computer. You can find instructions here on my website (https://www.yourdnaguide.com/transferring).
To get a glimpse into your own personal health, you can then upload your raw data file into www.promethease.com, pay them $5 and receive a one-time report. 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. 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. There is also a Facebook group to ask and answer questions about Promethease.
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. We talked about those options here on the blog last year. There is another one that I want to bring to your attention. It is called Livewello. At www.livewello.com 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 to join of $19.95, and some of the feature reports to require a monthly subscription fee.
Whatever you decided to do, please remember that your raw data does contain 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. For example, the Promethease privacy statement states, “After 24 hours Promethease deletes all information about your raw genome. After 45 days Promethease deletes your Promethease report. 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.”
If you would like to read more about Promethease, I suggest reading over the ISOGG wiki page (https://isogg.org/wiki/Promethease) paying special attention to blog posts by legal and genetic genealogy experts Judy Russell and Blaine Bettinger.
As the genealogists in the family, we are the keepers of many important truths and documents, certainly that includes our important health information.
Originally posted on July 2017 on genealogygems.com.