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Just saw this article on google news figured I'd share. It never occurred to me just how many people (80%) select yes to participate in their studies and just how large 23 and me and Ancestry are; according to the article 15 million users! Think about that. They could go into business for themselves with those numbers; and we know 23 and me is planning to thanks to all the users who allowed them free use of their data. When will they share in the profits? That's what turns me off. They could lower the price of testing but they rarely even go on sale.
Personally I think I'm going to not allow matching for now on FTDNA since I can turn the feature off and on as I go there. Hopefully it will send the message that I don't agree with them just allowing the FBI the same access because when we originally uploaded or bought tests our data was not going to be shared. They broke that promise. I rarely go there so it won't affect me the way that turning it off at Ancestry or My Heritage would. They really need to upgrade their web site it's so unfriendly to users and no app.
The big picture:
MIT Technology Review predicts more than 100 million people may be part of commercial genetic databases within the next two years.
Amid controversies over internet companies' collection of personal data, millions are paying to hand over DNA samples to a largely unregulated industry.
Driving the news:This month FamilyTreeDNA came under fire for voluntarily giving the FBI routine access to its database of more than 1 million users' data, allowing agents to test DNA samples from crime scenes against customers' genetic information to look for family matches.
FamilyTreeDNA apologized for not disclosing the agreement to consumers. The company told the NYT that users can disable the "matching" option to prevent their data from being visible. Ancestry.com and 23andMe say they require a warrant or subpoena before they consider turning over data to law enforcement.
Drugmakers also want access. Ancestry.com and 23andMe — the largest companies that, combined, have DNA data of 15 million users — both share anonymized genetic data with outside researchers and companies.
Last summer, 23andMe struck a drug-development deal with GlaxoSmithKline, and it's working on developing its own line of drug treatments.
Ancestry has worked with Google spinoff Calico to study human longevity.
I did opt out of research with Ancestry for myself and all the persons who agreed to test for my research.
I've actually been investigating this company (Nubula Genomics) in regards to paying to own my own DNA in particular so I can benefit from research if I so fit. But IMO it defeats the purpose since researchers can get so much for free basically from 23andMe and ancestry and others.
I'll note, I have allowed specific universities to use my DNA for research. Some universities - like U of M have a program where they will test your DNA for you for free if you allow them to use it for research purposes.
I also believe that in the future I'll find out that Ancestry will violate my decision to "opt out" and that I'll probably be involved in a class action lawsuit at some point in time.
I did opt out of research with Ancestry for myself and all the persons who agreed to test for my research.
I've actually been investigating this company (Nubula Genomics) in regards to paying to own my own DNA in particular so I can benefit from research if I so fit. But IMO it defeats the purpose since researchers can get so much for free basically from 23andMe and ancestry and others.
I'll note, I have allowed specific universities to use my DNA for research. Some universities - like U of M have a program where they will test your DNA for you for free if you allow them to use it for research purposes.
I also believe that in the future I'll find out that Ancestry will violate my decision to "opt out" and that I'll probably be involved in a class action lawsuit at some point in time.
I went to ancestry after turning matching off at FTDNA. I have 7 samples, mine was the only one signed up for research so I shut it off. I noticed that my sample is the only one I can turn back on. There is no research option on any of the other samples.
I did opt out of research with Ancestry for myself and all the persons who agreed to test for my research.
I've actually been investigating this company (Nubula Genomics) in regards to paying to own my own DNA in particular so I can benefit from research if I so fit. But IMO it defeats the purpose since researchers can get so much for free basically from 23andMe and ancestry and others.
I'll note, I have allowed specific universities to use my DNA for research. Some universities - like U of M have a program where they will test your DNA for you for free if you allow them to use it for research purposes.
I also believe that in the future I'll find out that Ancestry will violate my decision to "opt out" and that I'll probably be involved in a class action lawsuit at some point in time.
Just saw this article on google news figured I'd share. It never occurred to me just how many people (80%) select yes to participate in their studies and just how large 23 and me and Ancestry are; according to the article 15 million users! Think about that. They could go into business for themselves with those numbers; and we know 23 and me is planning to thanks to all the users who allowed them free use of their data. When will they share in the profits? That's what turns me off. They could lower the price of testing but they rarely even go on sale.
I wouldn't say rarely, it's at least once or twice per year, possibly more. And don't we get the benefits of the research every time we get a new report?
Think about that. They could go into business for themselves with those numbers; and we know 23 and me is planning to thanks to all the users who allowed them free use of their data. When will they share in the profits? That's what turns me off. They could lower the price of testing but they rarely even go on sale.
I guess they could allow researchers to use your data (all those ATCG's) for studies, if you allow them. But I thought for the so called "health research" like Genes for Good, The Personal Genome Project at Harvard and the new All of Us, they require (or at least would like) you to submit your family health histories and fill out surveys and they want you to update it, whenever it changes.
With the new All of Us, you actually have to go for blood work and get weighed, BP taken, etc. And you might need to keep going back periodically for check ups. While your DNA is great for these companies/researchers to have and of course they can see if you have the BRCA1 and 2 genes or not, etc., they really need to also know your entire family health history and see your blood work on a continuous basis to really maximize their understanding of your DNA, if you know what I mean, to get the "whole picture".
The DNA is only one piece of the puzzle, a very important piece.
I now some people who have used them to test their DNA.
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