Today, I received in my email inbox a questionnaire from Ancestry.com asking about my thoughts in using my family tree to study family health history. I recently wrote an article that touched on the use of genealogical data in conjunction with genetic studies for the APG Quarterly. In this article, I talked about how the Utah Population database was started as the result of a joint collaboration between the LDS Church and scientists at the University of Utah. This database is unique in that it links detailed family history information with genetic data to allow scientists to study the inheritance of many diseases. Many significant genetic discoveries have been made as a result of this database, including the famous (or infamous) BRCA1 and 2 genes. It is a significant resource for those interested in studying the inheritance of genetic disease. More about the Utah Population Database and the role of genealogical information can be found here: http://learn.genetics.utah.edu/content/science/utah/
Just as in genealogical research, DNA is of little value without a paper trail. Significant value and power lies in combining detailed family health histories with genetic data. In my opinion, 23andMe has missed a significant opportunity to link family histories with genetic data and make ground-breaking discoveries. From this survey, it appears that Ancestry.com/AncestryDNA recognizes the value of this information and that they may be considering getting into the business of supplying their customers with heath related information the way 23andMe did prior to November 2013. It would appear that they are constructing a database very similar to the Utah Population Database with SNP data generated from the Illumina Chip they currently use.
I have a few questions about this:
- Will AncestryDNA now be subject to the same FDA guidelines that are currently prohibiting health information from 23andMe, and if so, will Ancestry join the effort with 23andMe to allow this type of information to be provided to consumers?
- Or, will they ride 23andMe's coat-tails into the health side of the personal genomics market? Will Ancestry re-sell this data to large pharmaceutical companies?
- How can we participate in this research, and should we as customers be participating?
There are many other questions I could ask, and in the end, I do believe that health care needs a serious overhaul and the revolution that Anne Wojcicki started with 23andMe cannot be stopped now. I believe one of the best ways to revolutionize health care is to understand what our individual genetic code is telling us about future disease risk, how to manage that risk and prevent disease if possible. It appears from the questions on the Ancestry survey, that they recognize the power of this information as well, and that they plan to move into the space currently occupied only by 23andMe.
Screen shots of the email and survey follow:
Thanks to Angie for sharing this update and important information with my readers!
Sounds like another case of "Just because they promise something now, doesn't mean it will be valid next week." (Not meant specifically for Ancestry.)
ReplyDeleteHi CeCe I've been working in the pharmaceutical research industry for almost 20 years now and I've never heard of anyone using the Utah population/DNA study in their research. Is it being used in gene therapy research?
ReplyDeleteThe homepage for the UPDB says that they are currently sponsoring over 100 research projects.
DeleteThis is a link to a list of papers published from 2010 to present based on the UPDB http://healthcare.utah.edu/huntsmancancerinstitute/research/updb/publications/.
This link is to papers published from 1978 to 2009 http://healthcare.utah.edu/huntsmancancerinstitute/research/updb/publications/2009.php
Many of the papers relate to discoveries in cancer genetics, however, there are papers on linkage, autism, longevity, ethics and other topics.
My point is that I don't think it's a big deal to participate. Most studies are done in vivo or in vitro in a controlled environment and published. These materials are what's used in the treatment of patients.
ReplyDeleteI first tested with Ancestry.com back in Feb. of 2002. They got the information they wanted and later dropped the program. Though I've submitted information, census indexing corrections, my family tree, etc. to Ancestry.com online, I cannot access my own family history because I can't afford their prices this year. Now I've read that they are dropping their "new" DNA research program, but they are still selling kits.
ReplyDeleteWhy would anyone give them their family health history with their record?
Once your information is submitted, you pay to see your own information.
No thank you. I'll stay with FTDNA and 23andMe for my DNA research and testing.
Linda
AGREE!!!
DeleteHello: I have some info that may be useful to some of you in this connection. Regarding Ancestry.com and medical research, this is not a new thing for them; they have sold data from folk’s sites before. Let me explain, many years ago now I had a free-site on Rootsweb.com (operated by Ancestry although this is not always made fully obvious to users). In any case at the time I had 12000 plus names, so years later after I shut that site down (due to Rootsweb's transferring my data to the Ancestry data base without my permission) I finally joined Ancestry, I discovered something they call "Millennium File" and all my data was in this file. I contacted them and asked that they pull my data off, they essentially refused, saying that this was data they obtained/purchased from a 3rd party, and so had no control over it...long story short it seems that they sold their data (without permission of the owners) to a company doing genetic/medical research of the type you mentioned and when the company was finished they either returned the data to Ancestry or re-sold it back to them, and they re-named it Millennium File, and put it up on Ancestry. I am sure all this can be easily verified if need be. All this is why I do not keep my data on Ancestry or Rootsweb but on a paid for password protected site at Tribal Pages. NOTE: I do have a site on Ancestry. on my McFarland-Bowman lines, but it only has 6 names, just to maintain my being on there. "Mac" (crzypopmac@aol.com)
ReplyDeleteEarl MacFarland (Crzypopmac).
BTW, re this "survey" from Ancestry, yes it mentions the medical part, but mostly it is a marketing tool (this sort of thing develops a target market for future marketing efforts and will allow Ancestry to "focus" on their perceive "target market").
ReplyDeleteI wouldn't trust AncestryDNA with health information. They've done poorly enough with the science of genetic genealogy. The way they lead their customers to draw false conclusions about their DNA results is turning genetic genealogy into a pseudoscience for some people.
ReplyDeleteGenetic health science is even trickier than genealogy -- and it requires a level of transparency that AncestryDNA has been reluctant to deliver. The fact that they were recently crippled by hackers doesn't inspire a lot of confidence either.
Ancestry should address the concerns relating to their current products before moving on to new horizons.