How Long Does Wegene Take To Upload

You know something is coming of age when you lot begin to run across knockoffs, opportunists – or ads on tardily dark TV. Every bit soon equally someone figures out they can make money from something, rest assured, they will.

In the by few weeks, nosotros're showtime to see boosted "opportunities" for places to upload your DNA files. Each of them has something to "give" yous in return. You can view this equally 18-carat, or yous can view this as bait – or perchance some of each.

So far, each of them also seems to take an agenda that is NOT serving u.s. or our DNA – merely serving only or primarily them. I'm not saying this is good or bad – that depends on your perspective – simply I am proverb that nosotros need to be quite enlightened of a variety of factors before nosotros participate or upload our autosomal DNA results.

Some sites are more than straightforward than others.

I have already covered the fact that both 23andMe and Ancestry sell your Deoxyribonucleic acid to whomever for any they see fit.

Truthfully, I always knew that 23andMe was focused on health, but I mistakenly presumed information technology was on the report of diseases like Parkinson's. My female parent was diagnosed with Parkinson's, and so I had a personal stake in that game. When their very first patent was for "designer babies," I felt shell-shocked, stupid, naïve, duped and taken advantage of. I had willingly opted-in and contributed my information with the idea that I was contributing to Parkinson's research, while in reality, my DNA may have been used in the designer baby patent enquiry. I take no way of knowing and I had no idea that's the type of enquiry they were doing.

Parkinson'south yes, designer babies no. It's a personal determination, just once your DNA is being utilized or sold, information technology can be used for annihilation and you take no control whatsoever. While I was perfectly willing to participate in surveys and have my Dna utilized for a cure for diseases, in particular Parkinson's, I was non and am not willing for my Dna to be utilized for things like designer babies so the wealthy can select blue eyed, blonde haired children carrying the genes virtually probable to permit them to become athletes or cheerleaders.

And one time the Deoxyribonucleic acid true cat is out of the purse, so to speak, there is no putting it back in. In some cases, yous can opt out of identified data, but y'all tin't opt out of what has already been used, and in many cases, you can't opt out of having your anonymized information sold.

So, allow me give you an example of just how much protection anonymizing your data will give you.

Anonymized Data

Let's say that someone in one of those unknown firms wants to know who I am. All they accept to practice is drop my results into GedMatch and my name is correct at that place, along with my e-post.

Have a faux name at Gedmatch? Well, call back for a minute of the adoption search groups and how they place people, sometimes very apace and easily by their matches. Everyday.

Not to mention, my children (and my parents, were they living) are very clearly identifiable utilizing my Deoxyribonucleic acid. So while my Deoxyribonucleic acid is mine, and legally belongs to me, it'due south not entirely ONLY mine.

The promise of anonymized data by stripping out your identifying information has become somewhat of a hollow promise today. In a contempo example, a cholesterol report volunteer recognized "herself" in a published newspaper, but was not notified of the results. In an before paper, several Y DNA volunteers were identified also. Ironically, Dr. Erlich, now having formed DNA.Land and soliciting DNA uploads was involved with this unmasking.

Knowing what I know today, I would NEVER have tested at 23andMe and I would have to think very long and difficult about Ancestry. The hook that Beginnings has, of course, is all of those Deoxyribonucleic acid plus matching copse. Is having my anonymized DNA sold worth that? I don't really know. For me, information technology's besides late for an Ancestry conclusion, because I've already tested in that location and you cannot opt out of having your anonymized data sold.

I already had an Ancestry subscription, but some testers don't realize they have to have at least a minimum level subscription to receive all of the benefits of testing at Ancestry. That could certainly exist a rude awakening – and unexpected when they purchased the exam. The $49 DNA base subscription is not bachelor on Ancestry's website either – y'all have to know about information technology and telephone call back up to buy that level. I'1000 sure most people simply buy the normal subscription or do without.

I affair is for sure, our Deoxyribonucleic acid is worth a lot of coin to both research and Big Pharm, and apparently worth a lot of endeavor also, given how many people are attempting to capture our Dna for sale.

In the by few weeks, there have been several new sites that have come online relative to autosomal Dna uploading and testing.

Simply before we talk well-nigh those, I'd similar to have a moment for teaching.

The Sanger Survey

Sanger survey

I'd like to advise that you have a few minutes to view the videos associated with the Sanger Institute Deoxyribonucleic acid survey here. I call up the videos do a good job of explaining at least some of the problems facing people about the usage of their Deoxyribonucleic acid. Of course, you take to take their survey to come across the videos at each step – but it's good food for thought and they do permit you to brand comments.

Then, delight, take a few minutes for this survey before proceeding.

Genes and United states of america

One of the start "sidebar" companies to announced in September 2014 was at the site http://www.genesand.united states of america/ which is now nonfunctional.

I took screen shots at that time, since I was going to write an article about what seemed quite interesting.

Genesandus

It was a free service that offered to "detect the best genes that you tin can give to your child." Yous had to test at 23andMe, and then upload both you and your partner's raw DNA files and they would provide you lot with results.

I did merely that, and the screen shot below shows the partial results. There were several pages.

Genesandus1

At the cease of this section was a question asking if I wanted to "speak to a doctor about any of these benefits." I didn't, but I did want to know if factor option was actual possible and being implemented. I plant the site's contact information. I sent this eastward-mail, which was never answered.

genesandus2

So let me inquire you lot…where is my and my husband'due south Dna today? I uploaded it. Who has it? Was this just a ploy to obtain our Dna files? And for what purpose? Who were these people anyway? They are gone without a trace today.

DNA.State

More than recently, in the fall of 2015, Dna.Land came upon the scene.

As of today, 22,000+ people have uploaded their autosomal DNA files.

dna.land

What does DNA.Land offer the genealogist?

A dissimilar organization's view of your ethnicity as well as relative matching to others who upload.

The quality and reliability of these enticements offered past companies in exchange for our DNA files may vary widely. For example, when DNA.Land launched, their matching routine didn't find immediate family unit members. No production should ever be launched in an alpha land, which calls into question the quality of the residual of their products and enquiry. That matching problem has reportedly been fixed.

The 2nd enticement they offering is an ethnicity tool.

I can't show y'all my instance, because I take not uploaded my DNA to Deoxyribonucleic acid.Country. However, a genetic genealogy colleague conducted an interesting experiment.

TL Dixon uploaded iv DNA files in late Apr 2016. He tested twice at 23andMe, both tests being the v3 version, and twice at Ancestry, in 2012 and 2014, and uploaded all 4 files to Dna.Land to see what the results would be, comparatively.

TL 23andMe test 1

23andMe v3 examination one

TL 23andme test 2

23andMe v3 examination ii

TL Ancestry test 1 2014

Ancestry exam from 2014

TL Ancestry test 2 2012

Ancestry test from 2012

We all know that ethnicity testing as a whole is not terribly reliable, but is the most reliable on the continent level, meaning Africa vs Europe vs Asia vs Native American. Given that these raw data files are from the same testing companies, on the same bit platform, for the same person, the Ancestry 2012 and 2014 ethnicity results from DNA.Land are quite unlike from each other relative to African vs Eurasian DNA, and likewise from the 23andMe results – even at the continent level. Said another fashion, both 23andme results and the Ancestry 2014 results are very like, with the Ancestry 2012 test, shown last, being the outlier.

Thanks to TL Dixon for both his multiple testing and sharing his results. According to TL'southward known family history, the two 23andMe and the Ancestry 2014 kits are closest to accurate. Just as an aside, TL, surprised by the differing results, utilized David Pike'south utilities to compare the two Ancestry files to see if one had a problem, and they were both very like, so the difference does non announced to be in the Ancestry kits themselves – so the difference has to exist at Dna.Land.

So, what I'm maxim is that DNA.Land'south enticement of a different company's view of ethnicity, even after several months, and fifty-fifty at the continent level, even so needs work. This along with the original matching issue calls into question the quality of some of the enticements that are existence used to attract Deoxyribonucleic acid donors. We should consider this non merely at this site, simply at others that provide enticement or "free" services or goodies as well. Uploaders beware!

While the non-profit status of Deoxyribonucleic acid.Country along with their verbiage leads people to believe that their piece of work is entirely charitable, it is not, as reflected in this judgement from their consent information.

I understand that the research in this study may lead to new products, research tools, or inventions that accept financial value. By accepting the terms of this consent, I understand that I volition not be able to share in the profits from future commercialization of products developed from this study.

At to the lowest degree they are transparent about this, assuming you actually read all of the information provided on the site – which you should do with every site.

My Heritage Adds DNA Matching

This by calendar week, My Heritage, a company headquartered in State of israel, announced that it has added autosomal Dna matching. Some people remember this is neat, and others not and then much.

MyHeritage

My Heritage, like Ancestry, is a subscription site. I happen to already be a fellow member, so I was initially pretty excited about this, especially when I saw this in their web log.

Your Dna data will be kept private and secure on MyHeritage.

Our service volition then match you lot to other people who share DNA with you: your relatives through a mutual antecedent. You will be able to review your matches' family unit trees (excluding living people), and filter your matches by common surnames or geographies to focus on more relevant matches.

And besides:

Who has access to the DNA data?

Just y'all practise. Nobody else can run across information technology, and nobody can fifty-fifty know that information technology was uploaded. Only the uploader tin can run into the data, and you can delete it at any time. Users who are matched with your DNA volition non have access to your DNA or your email accost, but will exist able to get in touch on with you lot via MyHeritage.

I was thinking this might exist a great opportunity, perhaps similar to the Ancestry trees, although they don't say anything almost tree matching.

Notwithstanding, their Terms of Service are not available to view unless you pretend to outset an upload of your Deoxyribonucleic acid (cheers for this tip Ann Turner) so the "Terms of Service" and "Consent Agreement" links become available to view. They should exist available for everyone Earlier you lot start your upload.

On the MyHeritage main site, you'll see Deoxyribonucleic acid matching at the top. I'm a member, so, if you lot're not a member, your "main site" may look different.

MyHeritage1

Click on "learn more" on the Deoxyribonucleic acid Matching tab.

MyHeritage2

Footstep 2 shows you ii boxes saying you have read the DNA Terms of Apply and Consent Agreement. Don't just click through these – read them. Non just at this vendor, at all vendors.

In the required DNA Terms of Use we notice this in the v^th paragraph:

By submitting DNA Results to the Website, you grant MyHeritage a perpetual, royalty-free, world-wide, transferable license to use your DNA Results, and whatever DNA Results you submit for any person from whom you lot obtained legal authorization as described in this Agreement, and to employ, host, sublicense and distribute the resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with whatsoever technology or devices now known or hereafter adult or discovered.

And this in detail 7:

c. We may transfer, lease, hire, sell, share and/or or otherwise distribute de-identified data to third parties for any purpose, including without limitation, internal business organisation purposes. Whenever nosotros transfer, charter, rent, sell, share and/or or otherwise distribute your information to third parties, this information volition be aggregated and personal identifiers (such as names, birth dates, etc.) will be removed.

In the optional Informed Consent agreement, we discover this:

The Project collects, preserves and analyzes genealogical lineage, historical records, surveys, genetic data, and other records (collectively, "Research Information") provided by users in lodge to conduct research studies to amend understand, amongst other things, homo development and migration, population genetics, regional health problems, ethnographic diversity and boundaries, genealogy and the history of the human species. Researchers hope that the Projection will be an invaluable tool for a broad range of scholars and researchers interested in genealogy, anthropology, evolution, languages, cultures, medicine, and other topics and that the Project may do good future generations. Discoveries made as a effect of the Project may be used in the report of genealogy, anthropology, population genetics, population health bug, cultures, trends (for case, to identify wellness risks or spread of certain diseases), and other related topics. If we or a third party wants to conduct a study (ane) on topics unrelated to the Project, or (two) using Research Information beyond what is described in this Informed Consent, we volition re-contact you to seek your specific approval. In addition, we may contact you to ask y'all to complete a questionnaire or to ask yous if you are willing to be interviewed about the Project or other matters.

What are the costs and volition I receive compensation? MyHeritage will not accuse participants any fees in order to be part of the Projection. At that place will be no financial compensation paid to Project participants. The data you share with us for the Projection may benefit researchers and others in the future. If any commercial product is developed as a issue of the Project or its outcomes, there will be no financial benefit to you.

Y'all tin't run into the terms of employ or consent agreement unless yous are in the procedure of uploading your Deoxyribonucleic acid and in add-on, it appears that your DNA data is automatically available in anonymized way to third parties. The terms of service and informed consent data above does non seem to correlate with the marketing information which states that "nobody else" can come across your data.

The other matter that'southward Non obvious, is that you lot don't HAVE to click the box on the Consent Agreement, but you do HAVE to click the box on the Dna Terms of Use.

If you are not alright with the entirety of the DNA Terms of Use, which is required, do not upload your Deoxyribonucleic acid file to My Heritage. If yous are not alright with the Consent Understanding, don't click the box. Judy Russel wrote an detailed article almost the terms here.

Uploading your Deoxyribonucleic acid to MyHeritage is gratuitous today, but may exist a pay service later. Information technology is unclear whether a subscription is required today, or will be in the future. Nonetheless, at in one case one could upload a family tree of upwardly to 250 people to MyHeritage for costless through 23andMe. Larger files were accustomed, just were merely gratis for a sure fourth dimension flow and now the person whose tree was larger than 250 people and who did not subscribe is locked out of their account. They can't delete their larger-than-250 person tree unless they purchase a subscription. It's unclear what the time to come holds for Deoxyribonucleic acid uploads, copse and subscriptions as well.

I have not uploaded my Deoxyribonucleic acid to MyHeritage either, based on 7c. It would appear that fifty-fifty if you lot don't give consent for additional "research information" to exist collected and provided, they can still sell your anonymized DNA.

WeGene

WeGene

Very recently, a new company, WeGene at http://www.wegene.com has begun Dna testing focused on the Chinese market.

Their website it in Chinese, only Google translates it, at least nominally, equally does Chrome.

WeGene1

WeGene2

It does not appear that WeGene does matching between their customers, or if they do, I've missed it in the translations.

You can, however, upload at least 23andMe files to WeGene. I tin can't tell nigh Family Tree DNA and Ancestry files. Unless yous have directly and fairly contempo Chinese beginnings, I don't know what the benefit would be.

Their privacy and security, such as it is, is at this link, although obviously autotranslated. Some people seem to take establish other verbiage besides. Navigating their site, written in Chinese, is very hard and the accurateness of the autotranslation is questionable, at best.

Their autosomal DNA file is obviously available for download, because GedMatch now accepts these files.

I am certainly non uploading my DNA to WeGene, for numerous reasons.

Vendor Summary

This vendor summary was more difficult to put together than I idea it would be – in part because I am not a new user at either Ancestry or 23andMe and obviously tin't encounter what a new user would see on any of my accounts. Furthermore, Ancestry in particular has several documents that refer back and along to each other, and allow'due south only say they are written more for the legal mind than the typical consumer.

vendor summary

* – Both 23andMe and Ancestry appear to utilize all clients Deoxyribonucleic acid for anonymized distribution, just non for identified distribution without an individual opt-in.

*1 – According to the 23andMe Privacy Policy, although you can opt in to the higher level of inquiry testing where your identity is not removed, you cannot opt out of the anonymized level of Dna sharing/sale. Please review current 23andMe documentation before making a decision.

*2 – Can Opt in or Opt out.

*3 – Can opt out of not-anonymized sales, just non anonymized sales. Please verify utilizing the current Beginnings documents before making a decision.

*4 – Dna.land indicates that you can withdraw consent, but does not say anything nigh deleting your DNA file.

*5 – Dna.Land states in their consent understanding that they will not provide identified DNA information without first contacting you.

*half-dozen – At 23andMe, deleting Deoxyribonucleic acid from data base closes business relationship.

*7 – Automatically opted in for anonymized sales/sharing, but must opt in for identified Dna sharing.

*eight – 23andMe has been and continues to experience significant difficulties and at this point are not considered a viable genetic genealogy option by many, or stated some other fashion, they would be the last pick of the main 3 testing companies.

*nine – All legal action must exist brought in Tel Aviv, State of israel, individually, and not every bit a class activeness suit, according to item 9 in the Deoxyribonucleic acid Terms of Utilize document.

*10 – Website in Chinese, information through an automated English translator, and then the information provided hither is necessarily incomplete and may not exist entirely accurate.

Please notation that any or all of these factors are subject to change over time and the vendors' documents should be consulting and read thoroughly at the time whatever decision is being made.

Delight note that at some vendors there are many different documents that cross-reference each other. They are confusing and should all exist read before any determination is fabricated.

And of course, some vendors' websites aren't even in English.

Points to Consider

While these companies are the ones that take come up to the forefront in the by few months, at that place volition assuredly be more as this industry develops. Here are a list of things for you to think near and points to consider that may aid you make your decision nigh whether you want to either test or upload your autosomal DNA with whatsoever particular company. After all, your autosomal Dna file does contain that obviously much-sought-after medical data.

Start, ever read every certificate on a vendor site that says anything like "Terms of Use," "Security and Privacy" or "Terms of Service" or "Informed Consent." Many times the fine print is spread throughout several documents that reference each other. If their policy does not say specifically, exercise Non assume.

As well exist aware that the verbiage of most companies says they can change their rules of appointment at whatsoever time without notification.

Here are the questions y'all may want to consider as y'all read these documents.

Does the company or organization sell or share your data?
Is the information that is sold or shared anonymized or nonanonymized, understanding that really no 1 is truly anonymous anymore?
Who practise they sell your data to?
For what purpose?
Do you lot take the opportunity to qualify your DNA's involvement per study?
If you lot practise not live in the same country every bit the company with whom y'all are doing business, what recourse do you have to enforce any agreement?
How do you feel virtually your DNA being in the hands of either organizations or companies you lot don't know for purposes you don't know?
Are you asked up front if yous want to participate?
Can you opt out of your Deoxyribonucleic acid being shared or sold entirely from the beginning?
Can you opt out of your Dna existence shared or sold entirely at whatever time if you have initially opted in?
Do you receive the opportunity to opt in, or are you automatically opted in?
If you are automatically opted in, do yous become the opportunity, right then, to opt out, or only if you happen to notice the situation? And if you can opt out immediately, are you only able to opt out of non-anonymized information or can you opt out entirely?
Is the company up front and transparent about what they are doing with your Dna or practise you have to dig to unearth the truth?
If you already tested, and gave upwards rights, were you aware that you did so, and do yous understand if or how you tin rescind that inadvertent authorization?
Practice you accept to dig for the terms of service and are they as represented in the marketing literature?
Exercise you experience similar yous are giving truly informed consent and understand what tin can and will happened to your Dna, and what your options are if you change your listen, and how to exercise those options? Are yous comfortable with those options and the arroyo of the company towards Dna sale as a whole? Were they forthright?
For companies like MyHeritage and Ancestry, are their other unknown "gotchas" like a subscription being required in addition to testing or uploading to obtain the total benefits of the examination or upload?
What happens to your DNA if the company no longer exists or goes out of business organization? For two examples, look at the Sorenson and Ancestry Y and mtDNA Deoxyribonucleic acid results. This is certainly not what whatsoever consumer or tester expected. Not to mention, I'm left wondering where my DNA submitted to genesandus is today.
Who owns the company? What are their names? Where tin can you notice them? What is the address of the company? What does google have to say about the owners or direction? Linked-In? Facebook? If in that location is absolutely no history, that's probably as damning equally a bad history. No one tin can exist today in a professional capacity and take no history. Just saying.
Is the visitor acting in any way that would cause you not to trust them, their motives or agenda? As my mother used to say, the all-time predictor of time to come behavior is past beliefs.

Almost and Dearest to My Heart

I have family members who work in the medical field in various capacities. I also have family unit members who have or have had genetically heritable conditions and like everyone else, I would love to run into those diseases cured. My reticence to donate my DNA to whomever for any is not a result of being heartless. It's a function of wanting to exist in control of who profits with/from my DNA and that of my family.

Let me share a personal story with yous.

My brother died of cancer in 2012. He went for chemo treatments every two weeks, and before he could have his chemo handling, he had to accept bloodwork to assure that his organisation was able to handle the side by side dose of chemo.

If his white cell count was below a certain threshold, a shot of a drug chosen Neulasta was available to him to stimulate his body to increase the white claret cells. The shots were $8000 a piece. And no, that is not a typo. $8000! His insurance did not cover the shots, considering as far as they were concerned, he could just wait until his white cell numbers increased of their own accord and have the chemo and then. Of grade, delaying the chemo decreased his chances of survival.

Over the course of his chemo, he had to accept three of these $8000 shots. Fortunately, he did accept the money to pay, although he did have to reschedule his appointment because he was required to bring a cashier'due south check with the full payment in accelerate before the clinic would administer the shot. Later that, he simply carried an $8000 cashier'due south check to each appointment, but in case.

I do non for one minute believe that those shots Cost $8000 to industry, but I practice believe that the pharmaceutical industry could, would and does CHARGE $8000 to desperate patients in order to continue the chemo that is their but hope of life. For those whose insurance pays, it's entirely irrelevant. For those whose insurance does not pay, it's a thing of life and death. And yep, I'grand every bit as angry with the insurance company, merely they aren't the ones request for me to practise donate my DNA.

So, as for my Dna, no Big Pharm company will ever go their hands on it if in that location is ANYTHING I can practise about information technology – although it's probably too late now since I have tested with both 23andMe and Ancestry, who do not allow you lot to opt out entirely. I wish I had known before I tested. At to the lowest degree I would have been giving informed consent, which was not the instance.

Consequently, I want to know who is doing what with my Dna, so that I have the option of participating or not – and I want to know upwardly front – and I don't desire information technology hidden in fine impress with the visitor hoping I'll only "click through" and never read the documentation. I don't want it to be intentionally or unintentionally confusing, and I want unquestionable full disclosure – ahead of time. Is that too much to ask?

My brother had the money for the shots, and he died anyway, but can you imagine beingness the family of someone who did not have $24,000?

And if you retrieve for 1 infinitesimal that Big Pharm won't practice that, consider Turing Pharmaceuticals CEO Martin Shkreli, dubbed "the nearly hated man in America" in September 2015 for gouging patients dependent on a drug used for HIV and cancer handling by raising the price from $thirteen.50 per pill to $750 for the same pill, a 5,556% increase – considering he could.

Medical inquiry to cure disease I'm supportive of in terms of Dna donation, but not designer babies and non Big Pharm – and today there seems to be no way to separate the bad from the good or to determine who our DNA is beingness sold to for what purpose. Worse nonetheless, some medical research is funded by Big Pharm, so it'south difficult to make up one's mind which medical research is independent and which is not.

The companies selling our DNA and Big Pharm are the just people who stand to benefit financially from that arrangement – and they stand up to benefit substantially from our contributions by encouraging us to "help science." We'll never know if a study our donated Dna was used for produced a new drug – and if information technology's ane we tin can't afford, y'all can bet the pharmaceutical industry and manufacturers care not one whit that nosotros were i of the people who donated our DNA so they could develop the drug we can't afford. If any industry should non be soliciting complimentary DNA donations for research, Large Pharm is that industry with their jaw-dropping profits.

Then, How Much is Our DNA Worth Anyway?

I don't know, directly, but we can get some idea from the bargain that 23andMe struck with pharmaceutical company Genentech, the U.s. unit of Swiss drug visitor, Roche, in January 2015, as reported by Forbes.

Quoting now, directly from the Forbes article:

According to sources close to the bargain, 23andMe is receiving an upfront payment from Genentech of $ten million, with further milestones of as much equally $50 million. The deal is the first of ten 23andMe says it has signed with large pharmaceutical and biotech companies.

Such deals, which make use of the database created by customers who accept bought 23andMe'south DNA test kits and donated their genetic and health data for enquiry, could be a far more significant opportunity than 23andMe'south primary business of selling the DNA kits to consumers. Since it was founded in 2006, 23andMe has collected data from 800,000 customers and information technology sells its tests for $99 each. That means this unmarried deal with one big drug visitor could generate nearly equally much acquirement every bit doubling 23andMe's client base.

The article further says that the drug company was peculiarly interested in the 12,000 Parkinson'south patients and 1,300 of their parents and siblings who had provided family information. 10 million divided by thirteen,300 means Genentech were willing to pay $750 for each person's DNA, out the door. And then the tester paid $99 or upwards, depending on when they tested – $m earlier September 2008 when the test dropped to $399, to 23andMe and then 23andMe made another $750 per kit from the tester'southward donated Deoxyribonucleic acid results.

And that'southward earlier the additional $50 one thousand thousand and the other deals 23andMe and the other DNA-sellers have struck with Big Pharm. And so yes indeed, our Dna is worth a lot.

It's no wonder so many people are trying to trying to observe a way to entice us to donate our results so they can sell them. In fact, information technology'southward a wonder, and a testament to their integrity, that in that location is ANY company with access to our DNA results that isn't selling them. In fact, there are merely 2 companies, plus the Genographic Project.

Who Doesn't Share or Sell Your Autosomal DNA?

Of the major companies, organizations and sites, the only three, as best I can tell, that do non share or sell your autosomal DNA (or reserve the right to do so) and specifically state that they exercise non are National Geographic's Genographic Project , Family Tree Deoxyribonucleic acid and GedMatch.

Of those iii, Family unit Tree DNA, a subsidiary of Gene by Gene is the just testing company and says the post-obit:

Gene by Gene collects, processes, stores and shares your Personal Information in a responsible, transparent and secure environment that fosters our customers' trust and confidence. To that end, Gene by Gene respects your privacy and will not sell or rent your Personal Information without your consent.

National Geographic utilizes Family unit Tree Dna for testing, and the worst thing I could find in their privacy policy is that they volition share:

with other selected third parties and so that they may send you promotional materials nearly goods and services that they offer. You accept the opportunity to opt out of our sharing information about you as described below in the section entitled "Your Choices";
in accordance with your consent.

Nothing problematic here.

Your Genographic DNA file is only uploadable to Family Tree Deoxyribonucleic acid and Nat Geo does not accept uploaded information from other vendors.

GedMatch, which allows users to upload their raw data files from the major testing companies for comparing says the post-obit:

It is our policy to never provide your genealogy, Deoxyribonucleic acid data, or email address to 3rd parties, except every bit noted above.

Please refer to the entire documents from these organizations for details.

Serious genealogists have probably already uploaded to GedMatch and tested at or uploaded to Family Tree DNA as well, then people are unlikely to find new matches at new sites that aren't already in ane of these two places.

To Exist Articulate

I just want to brand sure there is no defoliation almost which type of companies we've been referencing, and who is excluded, and why. The but companies or organizations this article applies to are those who take access to your raw data autosomal DNA file. Those would be either the companies who test your autosomal Deoxyribonucleic acid (National Geographic, Family unit Tree Dna, Beginnings and 23andMe in the United states and WeGenes in China), or if you lot download your raw data file from those companies and upload information technology to another company, organization or location, every bit discussed in this article. The companies and organizations discussed may not exist the simply firms or organizations to which you can upload your autosomal Dna file today, and assuredly, in that location will be more in the time to come.

The line in the sand is that autosomal DNA file. Non your Y DNA, not your mitochondrial DNA, not your match list – just that raw data file – that'due south what contains your DNA information that the medical and pharmaceutical manufacture seeks and is willing to pay handsomely to obtain.

There are other companies and organizations that offering helpful tools for autosomal DNA analysis and tree integration, simply you do NOT upload your raw data file to those sites. Those sites would include sites like world wide web.dnagedcom.com and world wide web.wikitree.com. I want to be sure no one confuses sites that practice Non upload or solicit the upload of your raw autosomal DNA files with those that do. I have not discussed these sites that practise not upload your autosomal Dna files considering they are not relevant to this discussion.

This commodity does non pertain to sites that do not use or have admission to your autosomal raw data file – only those that do.

Summary

As the number of DNA testing consumers rises, the number of potential targets for Dna sales into the medical/pharmaceutical field rises every bit, every bit does the number of targets for scammers.

Along with that, I increasingly feel similar my ancestors and the data bachelor through my DNA about my ancestors, specifically ethnicity since everyone seems to be looking for a ameliorate answer, is being used as bait to obtain my Dna for companies with a hidden, or less than obvious, agenda – that being to obtain my Deoxyribonucleic acid for subsequent sale.

I greatly appreciate the Genographic Projection, Family Tree Deoxyribonucleic acid and GedMatch, the organizations who either exam or accept autosomal file uploads practice not sell my DNA, and I promise that they are non forced into that position economically in order to survive. It's quite obvious that there is pregnant money to be made from the sale of massive amounts of Dna to the medical and pharmaceutical communities. They lone accept resisted that temptation and stayed true to the crusade of the study of indigenous cultures and population genetics in the case of Nat Geo, and genetic genealogy, and but genetic genealogy in the case of Family Tree DNA and GedMatch.

In other words, only because you can doesn't hateful you should.

Bluntly, I believe selling our data is fundamentally wrong unless that data is abundantly articulate, as in truly informed consent as defined by the Office for Homo Research Protections, in accelerate of purchasing (or uploading) the examination, and not simply a required "click through box" that says you lot read something. I would be much more probable to participate in annihilation that was straightforward rather than something that was hidden or not straightforward, similar perhaps the company or arrangement was hoping we wouldn't notice, or we would automatically click the box without reading further, thinking we have no other option.

The observe needs to say something on the club of, "I understand that my Dna is going to be sold, may be used for profit making ventures, and I cannot opt out if I social club this DNA test," if that is the case. That is truly informed consent – not a check box that says "I accept read the Consent Document."

Aye, the companies that sell DNA testing and our Dna results would probably receive far fewer orders, but those who would order would be truly informed and giving informed consent. Today, in the large majority of cases, I don't believe that's happening.

We need to be aware every bit consumers and brand informed decisions. I'g non telling you whether you should or should not utilize these various companies and sites, or whether you should or should not participate in contributing your DNA to inquiry, or at which level, if at all. That is a personal decision we all accept to make.

Just I volition tell you that I recollect you lot demand to educate yourself and be aware of these trends and problems in the manufacture so you can make a truly informed decision each and every time you consider sharing your Dna. And you should know that in some cases, your Dna is beingness sold and there is absolutely zilch you lot can do about if it you employ the services of that company.

Above all, read all of the fine print.

Allow me say that again, channeling my all-time Judy Russell voice.

Ever, READ ALL OF THE FINE Impress!!!

Always.
READ.
ALL.
OF.
THE.
FINE.
Impress.

Unfortunately, things are not ever every bit they seem on the surface.

If you see a click-through box, a red neon danger light should now first flashing in your encephalon and decline to allow you to click on that box until you lot've done what? Read all the fine print.

There really is no such affair every bit a gratis tiffin – and then be judiciously suspicious.

I will leave you with the aforementioned thought relative to testing companies and upload opportunities that I said about companies selling our data. Just because yous tin doesn't hateful you lot should.

I think early in this game we all got excited and presumed the best about the motives of companies and organizations, like I did with both 23andMe and genesandus, only now nosotros know better – and that at that place may exist more to the story than initially meets the eye.

And besides that, we all know that presume is the showtime cousin to assume…and well, we all know where this is going. And by the way, that'south exactly how I feel about genesandus who disappeared with my and my married man's Dna. I wasn't well-nigh suspicious or judicious enough and so…only I am at present.

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Disclosure

I receive a small contribution when you lot click on some of the links to vendors in my manufactures. This does Non increase the price y'all pay but helps me to keep the lights on and this informational blog gratis for everyone. Please click on the links in the articles or to the vendors below if y'all are purchasing products or Deoxyribonucleic acid testing.

Cheers so much.

DNA Purchases and Free Transfers