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

My kind of price!  :)

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It costs money to test DNA. Universities are squeezed for money these days, that is why they raise tutitions and students go into debt forever with student loans.

Question is who is paying for the tests and why.  Hint comes from Health Questions. Answer obvious: Insurance companies, they are, apparently, building a data base to link health to genetics, that in the future they can repeal both the ACA and GINA.

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There's a federal law that's supposed to protect people from having their own genes used against them, the Genetic Information Nondiscrimination Act, or GINA. Under GINA, it's illegal for an employer to fire someone based on his genes, and it's illegal for health insurers to raise rates or to deny coverage because of someone's genetic code.

But the law has a loophole: It only applies to health insurance. It doesn't say anything about companies that sell life insurance, disability insurance or long-term-care insurance." http://www.npr.org/sections/health-shots/2013/01/17/169634045/some-types-of-insurance-can-discriminate-based-on-genes

Laws are not writ in stone. What one congress and president can pass, another can negate.. like the Glass Steigall Act which prevented the merger of commercial banks with investment banks. 

AHIP, (Association of Health Insurance Providers) has a lot of money and clout and we got the best congress money can buy.

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I don’t see any evidence that this is a nefarious plot by insurance companies. Do you have any evidence to support this claim? This is a project supported by multiple universities and research grants are available for this sort of testing. The cost to do these tests using Illumina next gen sequencing is pennies. That fact that these tests cost $99 retail only reflects the price the market will bear but does not reflect the cost to process samples on the wholesale market for a study like this. The genetic data gathered is de-identified. The promise of linking diseases to specific DNA loci justifies this research. Similar projects have been done in other countries and the results have been very helpful. There is no reason to single out DNA diagnostics from any other class of diagnostics. For example would you call any sort of research into diagnostic testing a plot by insurance companies? No! We need to develop this technology and therefore we need to analyze a wide range of genomes from the general population.

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Evidence? Oh yes, I can easily get access to their files.  I didn't use the adjective nefarious. You did. I simply stated the case.

Fact: DNA testing costs money

Fact: Universities don't have that money, and rely on corporations for funding projects.

Fact: AHIP wants to repeal ACA and GINA, that they can then use underwriting (risk) to raise rates or deny coverage.

Those are facts or logical conclusions.

One doesn't need evidence, especially when the profit motive is involved.

There isn't such a thing as free lunch, and there is no such thing as free DNA testing without strings attached. I would love to see the legal document one must sign for this free DNA test.

What is even more interesting is to use genealogy as a tool by which to get people to pay to test their DNA, thus giving researchers (and insurance companies) access to DNA. Your and my sample are or can be used by research scientists to track human migration.

On the other hand 23andme's use of DNA is more questionable, in as much as they insist on you answering a series of health questions.

And it is already well established that health and life insurers seek to use genetic propensities for underwriting or refusing insurance policies.

Evidence not needed. Just draw your own conclusions.

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Can you show me how you accessed their files? What files did you get access too? Questionnaires? DNA data? Was the data identifiable or de-identified? 

You can read their agreement without giving them information. They present it in full before you join. I read it and thought it was acceptable frankly.

As someone who has actually sequenced DNA in labs at Berkeley I can tell you that I was not funded by a for profit entity ever. So I can't agree with your conclusions. Government grants are available for this type of research. I think you have a poor understanding about the funding sources available at Universities. 

That AHIP wants to repeal ACA and GINA I do not disagree with at all. I agree that life insurers may use DNA data to price a policy. People should be aware of this and if they don't like it they should vote for people in congress who will make this illegal just as they did with ACA and GINA. 

Personally I would love to see researchers get access to more DNA samples. 

Neither 23andMe nor AncestryDNA insist that you answer health questions. They do ask but you do no have to answer. Although some of those questions could be used to cure disease someday. I think that's probably a good thing. 

 

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Hi Roland: See above. One does not need access to files, to draw conclusions from facts mentioned above.

DNA testing costs money.

Universities don't fund research projects. Corporations fund research projects. (I know of which I speak, MBA and son is a PhD.)

So why would a corporation fund such research project and require one to answer a health questionairre.

Conclusion and answer:  The profit motive. There are numerous health insurers (AHIP) that seek to repeal ACA and GINA and make use of health related DNA questions for insurance underwriting.

Nothing conspiratorial or nefarious about it.. Simply corporations fulfilling their legal mandate (ruling by SCOTUD)  to maximize shareholders profits.

In 2003, Cristian Capelli, a Biologist, using grad students conducted a survey of the Y Chromosone in the British Isles, over 1772 samples from 25 towns (small towns with a history of little to none inward migration).

He initially took blood samples, but as science progressed changed to swabs.  

That survey cost money, and more money to process the DNA.  Fast forward such research and surveys no longer cost as much, given that there are so many people who spend their own money to provide samples.

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Roland, you said that you were not funded by a for profit institution ever.

Well then somebody funded your department, and your research budget came out of that deparatments funding.

You are a biologist, but obviously not an administrator or an MBA.

There is no free lunch, and public dollars are not used to fund such research, or shall I say any research, and since Ronald Reagan there is less and less public dollars available to universities and they have had to make up shortfalls by raising tuition rates, and driving the students into lifelong debt.

Again, no free lunch, and some corporation funded your research, not directly but via the University grant system or via your department.

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So did you or did you not access people files and if so why aren't you answering my questions? If you did did you report it so that they can tighten up their security? I would think that if you discovered a security flaw and you are this concerned about users data being accessed by third parties that you would have followed up with them and report the issue. 

From what I am reading above you are against research that may discover the genetic cause of certain diseases because you can not find the genetic cause of a disease unless you do the research we are discussing. Yet, finding the genetic cause is the first step is discovering a cure or at least a partial treatment. So if we want these treatments we must do this type of research. I personally would like to see such genetic causes and treatments discovered and I think most Americans would as well. 

The statement you made above is false. Not all university research is funded by corporations. 

Why would a corporation fund such research project and require one to answer a health questionnaire? First you and I don't know the source of the funding. But regardless of the source of funding the point of filling out a health questionnaire on a project whose goal it is to find the genetic cause of disease should be obvious to anyone. They have to know which samples belong to people who have the disease and which do not. Then they can see if those with the disease have a specific set of mutation(s) that may be associated with the disease. If they don't know this information then there is no point in having the DNA samples. You can not find the cause of a disease simply by collecting DNA samples. I think I should know. I'm a molecular geneticist. 

By the way I don't have a problem with private funding of science. To make the case the publicly funded research is immune from bias is to ignore everything we know about politics. That bias exists in funding has to be acknowledged. But it occurs from both private and public sources. That bad science is done can not be denied. What is important is that methods and results are independently reproduced by an unrelated party and the results are peer reviewed and methods and data are made available. That hopefully catches wrong conclusions. But bias will always be a part of science and not just because of the source of funding. 

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Give me a break. Of course I didn't access files. I don't need to, no one does, not to draw a logical conclusion.

This demand for evidence is just another tactic to turn the question, make the questioner the object, it is an old and transparent tactic.

Evidence is not needed, facts are known and indisputable and if I were to start citing evidence, eyes would glaze over and none would read.

I notice that you are extremely defensive

And no I am not against researach, I am against the misuse of research by PhARMA, AHIP and corporations in general.  

Lots of government sponsored research is used by, free of charge, by corporations.

The reason a corporation would want one to answer a health questionairre is to help them determine which genes are associated with diseases. They already have a lot of that information, but always want more.

You said: The statement you made above is false. Not all university research is funded by corporations

Strawman defense (thanks) I did not say ALL university research is privately funded, but a lot of it is, probably most. 

Simple fact is that Universities are cash strapped these days, so are state governments and the Republican congress has ideological/religious motives for cutting funding for education and research.

So where do Universities get their money for research? From Corporations and foundations funded by corporations.

I shouldn't have to explain to anyone, this is something a rational, educated, perceptive person would know or intuit.

And I am not talking about bad science. I am talking about using the results of scientific study for the profit motive, quarterly reports, to show to the shareholders and of course get raises and bonuses for CEO;s, CFO's and other executives.

By the way, these "Health questionaiires" are innocuoos, but the answers that are provided can be put to many uses, good and bad.

You may have been great in the lab, but you were not and are not an administrator, even someone who puts together a budget, has no idea where the funds for that budget come from.  That is the job of the Dean, the Department heads, the grants administrators.

I was a grants administrator for a non profit, and not even the department heads knew or cared where the money came from, all they cared about was putting together their budget and getting the money to operate.

 

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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