Free DNA testing

Question

I am not sure if you are aware, but if you live in the US, you can get free DNA testing.

The University of Michigan is doing research with DNA.  And as a thank you for participating in the study, you get a complete copy of your DNA that can be uploaded to various sites for genealogy.

You can find out more on their webpage:

http://genesforgood.sph.umich.edu/

It is easy to participate.  You will need to have a facebook account.  The reason for this is because they have their questionaires and surveys set up through there.  The health history surveys are easy and you only have to do 15 of them.  And you need to do 20 of the health tracking surveys.  There are 25 of the health history surveys, so you can pick and choose which to do.  There are only 8 of the health tracking surveys.

You basically have to do the whole set of health tracking surveys for 3 days.  You can do it more though.  The more data you share, the more you will be able to help with their research.  It takes minutes to do.  And no I am not part of their team.  I am just happy to have been able to get my kit & have them do my DNA for free.  I had only previously done the smallest test available a few years ago so I don't have the full profile.

Once you complete the health tracking, it takes a few days for them to state that your kit shipped.  Even though it says to expect the kit in 2 - 4 weeks, I got mine in less than a week.

Comments

I didn't ask if you had accessed the file for evidence about the use of the data. I asked because you claimed you could access their data anytime. That is a very serious accusation and would imply their system is in breach of current law. So I would still like to know how you can access their data any time and if you've told them about this security issue.

 

I'm sorry you feel I am using "tactics." You and I have exchanged many emails in the past discussing DNA and I always felt we had a good discourse. I never felt that you were an adversary and I certainly have no intent of using “tactics.” I just disagree with you plain and simple. I’m not trying to prove I’m right. That’s not important to me. But sometimes I feel that people get too wired up about anything to do with DNA. And really isn’t not all the different from any other health concern. I think specifically older people have a real problem with it. The younger generation is very open with it. Personally I’ve published part of my own gene sequence with the NIH. I plan on publishing my entire genome since I’ve already sequenced it. Some older folks might find that horrifying, most younger folks would not. I’m not saying one or the other is morally superior. Quite the opposite! I feel people should do what is within their comfort zone. But I am just not alarmed about this stuff. This is voluntary after all  

 

I am against misuse of research as well. I figure most people are. But the fact is you can’t find the genetic basis for a disease unless you collect both DNA samples and a health history. It simply can’t be done any other way. So if we want the new genetic discoveries and cures we need to collect both. Corporations are not the only ones that want to determine which alleles cause which disease I suspect. I think most of us want to know this. How that information is used I think should be the target you should go after. And that’s a matter of law not science. Science can tell us how something works or breaks and how to fix it. What we do with that information is a political and legal issue which I am not an expert on. I certainly agree that health insurance companies should not use these data to prevent people from getting insurance. I doubt many people do except for people invested in health insurance companies. You do seem to concede that the data can be put to both good and bad uses. I’m glad we can agree on that. But I feel that’s not a good reason not to do the research. It should be done.

Government research is often used by corporations I do agree with that. And in most cases this has been a real powerhouse for our economy. That’s part of why American has done so well – publically funded basic research.

 

Basic research is underfunded from both private and public sources. Both of us agree on that. I personally don’t see an issue with private funding being used as long as proper controls are used to confirm that the conclusions are correct. I discussed that above. I think you will agree that the government doesn’t always fund and run the best projects. As an example we only need to look at the human genome project which languished for years in government run labs only to be nimbly overtaken and finished by a private firm at a fraction of the cost.

 

I think the question can be answered. I sent an email to the project and asked them where they got their funding. We’ll see what they have to say. But I’ll still say I really personally don’t care if they take private money as long as the data is available to established researchers at major universities. I think you’re concern should be more about the laws in place to protect insurance consumers. Isn’t that where the focus should be and not on the research itself?

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You said: I didn't ask if you had accessed the file for evidence about the use of the data. I asked because you claimed you could access their data anytime. That is a very serious accusation and would imply their system is in breach of current law. So I would still like to know how you can access their data any time and if you've told them about this security issue. 

 

My statement was tongue in cheek, common sense would or should tell one such. It was meant sarcastically, but there is no emoticons available .

Anyway, this whole discussion (argument?) becomes endless and circular. No end in sight, and a waste of the space on this otherwise valuable site.

I had my say, stated facts, ventured my analysis and opinion and there is nothing more to say, other than let readers draw their own conclusions.

 

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I did email the team at Genes for good and this is what I received back this morning:

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Hi Roland,

 

Thank you for your email and for the great question. This is a valid concern and one we hope more people would ask before joining.

 

Our funding comes from an endowment given to Gonçalo Abecasis as the Felix E. Moore professor and is not from a single grant. As with other academic research studies, we are closely regulated by our Institutional Review Board, and any changes we make to our study must be approved - this includes adding new surveys or implementing new features/visualizations for participants. Our approval does not allow us to share data with non-academic institutions such as insurance companies or pharmaceutical companies (nor do we want to). Further, any data that we share is de-identified. That is, no participant names will be given, only an alphanumeric participant ID. Your genetic data and survey responses will only be used to further research in the field of public health, and we will always take the greatest care to ensure that your data is secure from those who may use it for anything less altruistic. We are very grateful to everyone who has joined our study, and the last thing we want is a privacy breach such as the one you describe.

 

We do realize that the thought of participating in a study via social media may seem a bit suspicious - after all, Facebook is notorious for collecting data on its users. But in this case, Facebook is merely a platform on which we have distributed our separate-from-Facebook web application in order to reach a wide audience. Facebook allows us to recruit participants from all over the U.S. unlike many other research studies, allowing for more effective research overall. Rest assured that none of your data is shared with Facebook; in fact, the only thing Facebook can see is that you have installed the app. When you download your genetic data, it is made available through Box, a HIPAA-compliant file sharing platform.

 

Thank you again for reaching out. Please let me know if you have further questions!

 

 

Best regards,

Anita Pandit

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Thanks Roland:

This gives me concern: That is, no participant names will be given, only an alphanumeric participant ID. Your genetic data and survey responses will only be used to further research in the field of public health,

My concern was not that they would use genetic data to underwrite me,or the participant, but that the genetic data combined with health questionairre (e. 23andme) is intended for use in future underwriting, especially once AHIP has been successfulin getting the ACA repealed.

It is, perhaps, a moot point, but we live in a corporate controlled, profit motivated world and the bottom line and it is inevitable that corporations will control and/or profit from virtually every aspect of our lives, including DNA.

It would be a wonderful thing, if genetics was used to find cures for genetic diseases, like my insulin resistance, but there is no profit for PhARMA in such humanitarian efforts, only loss.

Clever marketing tool, using genetic genealogy, to obtain mega data, not just for insurance purposes, but for research purposes,without having to pay for it, as was the case with the Capellie Census for Y DNA in the British Isles.

 

 

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William, I received a second reply:

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Hi,

Joining late but clarifying a few things:

 

* All our funding is currently from internal University of Michigan funds, like Anita explains.

 

* We would never share data with a company that wanted to use it to harm our participants (for example, to declare them ineligible for insurance)

 

* We would share code data (eg with things like names and addresses removed) with other scientists who want to use it for research on human health and disease.

 

* In that context (sharing data with identifiers removed, for research, with agreement from data users not to attempt to identify participants), we would be open to sharing data with companies - after all, much biomedical research happens there.

 

We really value the trust and generosity of participants and believe we have to maintain that by being good stewards of the data and information you share with us. We obviously can't guarantee 100% security (we could be hacked by criminals despite our best efforts), but we work hard to minimize risk and maximize benefits.

 

Hope this helps and thank you for participating!

 

Goncalo

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Yes, of course the funding is internal, Question is where does the UoM get it's funding for the project (for shorthand purposes let's call it laundering)

AHIP provides the University with a grant, and the University funds a research project, as a matter of fact that is how all virtually all research projects are funded..internally via the University, but the University gets the money from corporations or foundations set up by corporations.

Of course they don't share data. I never suggest they did, however that statement is a strawman, it is the megadata that the persons who provide the funds to the University for the research want.. not the personal data. The mega data.

I initially stated that there is a law (signed by Bill Clinton) called GINA,that prohibits health insurance companies from using genetic data for underwriting purposes.. does not apply to life insurance though.

But laws come and go, even amendments come and go (prohibition), it all depends on who controls congress and the whitehouse, or even the ideological bent of SCOTUS majority.

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That these data will be used to find markers for disease we can have no doubt. But that process of mapping disease alleles has been going on for decades. We already have a huge public database of these markers freely available on the NIH website. You can browse all kind of disease markers and they link directly to their journal database. Many countries are already doing this in large scale genome mapping projects. Obama has announced the 1,000,000 genome project for the USA as well. And there are other public reference genome projects available for free. My old school, Berkeley was even going to sequence the genome of all its students except they were threatened with a legal suite because it could be regarded as practicing medicine. In any event the database of disease markers is already available to insurance companies and it is going to be growing every year. That ship has already sailed. The only variable is how fast the new markers will be discovered and how quickly that knowledge could be utilized to find treatments or preventative lifestyle changes.

I certainly hope that insurance companies never obtain the right to use genetic data to determine rates. That's certainly not something the American people would support. But there is corruption and quid-pro-quo politics so I understand that concern.

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Regardless of all of the hubbub, I have joined the study and look forward to the results. I do enjoy getting involved in studies which benefit mankind.
I went to school in AnnArbor and had all of my medical done at U of M when I was there. I have all of the confidence in the world in them.
Thank You for the information

Ruth Henry Donahue

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I'm with you Ruth! 

By the way - this is a completely unrelated study including a full genome sequence funded only by Federal Money which you can join for free:

President Obama’s 1-million-person health study kicks off with five recruitment centers

http://www.sciencemag.org/news/2016/07/president-obama-s-1-million-person-health-study-kicks-five-recruitment-centers?utm_campaign=news_daily_2016-07-08&et_rid=17054093&et_cid=619639

 

 

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When I have gone through the 4 slides, nothing happens.  How do I continue?

Answer 1

Unfortunately you can't properly compare with other labs.  See:

http://www.wikitree.com/g2g/262136/genes-for-good-may-now-work-as-a-23andme-file-opinions-please

Comments

Awww!  The price was right for a change.  :)

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Ancestry has a sale at the moment for July 4th. $79 in the US.

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I've tested at all three companies and uploaded the results form all three to GEDMATCH. While there is some minor variation in my matches overall I get almost an identical list of matches and matching segments regardless of the kit I choose. 23andMe includes many additional SNPs useful for medical screening but the overall pool is very similar. If you are only interesting in health screening test with 23andMe. If you want to do genealogy test at AncestryDNA and/or FTDNA.

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Hello Roland,

Please change all but one of your GEDmatch uploads to Research mode or delete it.  Duplicate auDNA tests in GEDmatch makes triangulation for you and your matching cousins very confusing.  Please see:

https://www.wikitree.com/g2g/204976/when-is-dna-testing-too-much-of-a-good-thing?show=204976#q204976

Thanks and sincerely, Peter