HOW DNASIMPLE WORKS

What exactly is DNAsimple?

DNAsimple is the match-maker of the genetic research world. If there is a study out there that needs participants like you, we'll tell you about it and let you decide if you want to participate or not. If you decide to participate, we'll pay you for doing so! Even better, our match-making platform is 100% anonymous, so no one can see your identity.

For donors, the basic steps are:

     1. Sign up for a free account at DNAsimple

     2. Provide basic demographic information, such as age and height

     3. Fill out a brief medical history

     4. Wait a few seconds while we check for studies you can donate to

     5. If you don't qualify now, we'll automatically notify you when you do

     6. Review any study you match and decide if you want to participate

     7. If you participate, complete a saliva kit at home and be compensated!

Through DNAsimple, donors can contribute to and expedite scientific research while being fairly compensated for the valuable information that they provide. We believe that our process will enable donors to double the pace of genetic research, bringing cures and treatments to millions of people far earlier than they could otherwise be provided.

I'm in perfect health. Should I join?

Yes! Researchers aren't only interested in people who are sick or who have a particularly rare condition.

For one example, researchers need control groups. For example, if a researcher believes that a condition is caused by a genetic mutation, how can they find it? One way is to find a large number of people who have the condition and compare their DNA to a large number of people who don't have the condition. If you find that all of the people who have the condition have a mutation that none of the healthy people have, you've probably found the cause of the disease!

For another example, researchers are often interested in differences across ethnic groups, and healthy donors are valid participants in those studies. For example, why are there differences in skin cancer rates among Asian and European Americans, even if they live in the same state? Why do Native American women have a lower risk of breast cancer than neighbors of any other ethnicity? For these types of questions, researchers would want to analyze the DNA of a large number of people from these ethnic groups and then find out what differences there are and why those differences might cause these interesting outcomes.

So even if you're perfectly health and think there is nothing "special" about you, there are still studies out there looking for people like you.

How do I donate a DNA sample?

It's easy! Once you've signed up and found a study that you match, just click the button that says you want to participate. As soon as you're approved by the researcher, we'll send a saliva kit (sometimes called a "spit kit") to the address that you've provided us. When it arrives, you can just take a few minutes to complete the saliva kit in the comfort of your own home whenever you're ready. After that, just pack it up and send it back -- postage is on us, of course!

Does DNAsimple analyze my ethnicity?

No. DNAsimple is not at all similar to other genetics companies that you may have heard of. For those companies, you pay them about $200 in exchange for a minimal analysis of your DNA -- for example, what percentage of your ancestors may have come from Europe, North America, Africa, or Asia. Then, those companies may sell your data to "big pharma" companies or may have their own internal researchers use it. Drug companies may then market new drugs based on what is found in these studies. This has been referred to as triple dipping, where the analysis company gets paid twice (once by you, once by the research company) and the drug companies get paid when people buy their products, but the donor is never paid by these companies.

DNAsimple has a completely different model. Our goal is not to analyze your data and then sell it without your permission. We believe that the genetic material you hold is valuable, that you should be compensated fairly for sharing it, and that you should have the right to decide what research your genetic material is used for. Therefore, we don't collect a saliva sample from you right away when you sign up and don't do any cursory analysis as these other companies might.

Do you store and resell my data?

No. DNAsimple does not sequence DNA. We are a match-making service between researchers and donors who would like participate in studies. Because we don't sequence DNA, we also don't store any sequenced DNA. Additionally, when you complete a saliva kit for a study, it is forwarded to the researcher immediately after removing any identifying information (for example: your return address). DNAsimple does nothing else to your sample and allows the researcher to sequence it on their own.

Again, you can think of us as similar to the Bone Marrow Registry in this way. Their goal is not to store large amounts of bone marrow in their facility; rather, they simply maintain a list of people who would be willing to donate bone marrow when someone is in need. DNAsimple operates the same way. We don't store or maintain your DNA in any way. We simply maintain a list of people who are willing to donate their DNA when a researcher says they would like to use it. In both cases, the donor will be notified, informed, and compensated for their donation.

Is my donation used multiple times?

No. When you agree to donate your saliva sample to a study, your donation is only used for that study. We will never provide your donation to any study aside from the one which you agreed to donate to.

If we ever want to use a donation from you again, we will notify you about your chance to participate in the new study, provide you with information about that study, and then allow you to accept or decline participation in that study. If you decide to participate, you will be paid again for your new donation. This is true for whatever number of studies you decide to participate in. For example, we have had at least one donor who donated to three studies, which means they agreed to each of the three, donated a saliva kit to each of the three, and then were compensated for each of the three.

Do I get a saliva kit right away?

No. We only send saliva kits to donors who qualify for a study and have agreed to participate in that study. Therefore, when you sign up, we will not send a saliva kit to you right away. Instead, we will continually check for studies that you qualify for, notify you whenever we find one, and then send you a saliva kit if you agree to participate in one of those studies.

Is it free to sign up?

Yes, accounts are 100% free. Furthermore, donors will be paid for each study that they are able to contribute their DNA to. Researchers will only pay once a donor has successfully completed the process of providing a saliva sample, and any lost or otherwise unusable samples will not be counted towards the number of samples provided.

How much can I get paid?

The exact amount will vary from study to study depending on certain factors specified by the researcher, but the base compensation for a single donation is $50 (US). That's roughly the same as most blood plasma donation payments -- but unlike a plasma donation, saliva kits are completely pain free!

Note that for donors outside of the US and Canada where handling a check from a US bank would be inconvenient, we instead offer pre-paid Visa cards.

Can I donate more than once?

Yes! We've had at least one donor so far who qualified for three different studies. They agreed to participate in all three and completed a saliva kit for each of them, so they were compensated a total of $150 so far. We hope to have many more donors who qualify for even more studies in the future, and we're talking to new researchers every day to help make that happen.

Is the rate always $50?

As of right now, all studies are compensated at the rate of $50. We believe that we will be able to compensate more than $50 in the future. Part of this is that we plan to offer additional services to researchers (such as providing extracted DNA rather than the saliva kit itself), and part of it is that we will begin to offer differentiated pricing to researchers based on a number of factors, including disease frequency and request size. These changes should enable us to offer more than $50 to donors, and we'll continue to look for other ways to increase the compensation provided.

Is this for the United States only?

As of right now, DNAsimple is only operating in the United States and Canada. We hope to expand to yet more countries in the future, but we're still checking international health privacy laws in a number of different locations as well as finding shipping partners. If you want to stay updated on this and other items that we're working on, feel free to follow us on Facebook or Twitter.

Do I need to have a rare condition?

No! Genetic researchers don't only study rare conditions; in fact, the factors that a researcher may be looking for can be incredibly varied. In some cases, it is true that a study will be seeking one-in-a-million patients, and only a few samples will be needed. In other cases, an investigator may want to study one particularly interesting case as well as their family members. In yet other examples, investigators may want to collect a large number of samples based on the presence of a relatively common condition, or even no condition at all!

In short, researchers are looking for every type of sample -- every condition, every race, every gender, every age, you name it! But hey, don't just take our word for it. Why not use our sign up for free in two minutes to see who's looking for you right now?

Is this private? What can others see about me?

Yes. DNAsimple was built from the ground up to ensure your safety and privacy, compliance with US HIPAA laws, and the integrity of double-blind studies.

DNAsimple is 100% private. No one will ever see your profile except for you -- not even the staff of DNAsimple themselves.

DNAsimple does not sell any of your private information and never will. Your privacy is our top concern, and we are therefore committed to never selling or otherwise providing any user information to any third party under any circumstances.

Researchers can't see your profile. In fact, nobody will be able to see your profile except for you. Your samples will be provided to the researchers in an anonymized fashion, and the researcher will only know that the DNA sample has come from a donor who meets the medical profile that they have specified.

We take privacy extremely seriously at DNAsimple, and we've built a system designed to protect it from day one. If you have any concerns about privacy before or after signing up, please feel free to contact us with your thoughts.

Why can't I log in with Facebook, Google, etc.?

In short, to protect your privacy.

If DNAsimple allowed donors to log in via Facebook or Google, then many of our donors would be connected to a very extensive "online profile" -- their Facebook or Google account(s). This also means that any security flaws that ever occur in Facebook and/or Google's log in protocols would leave DNAsimple donors vulnerable. There have been demonstrated weaknesses in the past, and others may be waiting in the future, as well. In the very worst case, these weaknesses would allow attackers to collect information through malicious exploitation.

DNAsimple, due to strict HIPAA regulations, simply can't take the risk of a worst case scenario as described above. We want donors to rest assured knowing that external vulnerabilities will never compromise the privacy of their health information, and that under no circumstance can a third-party platform extract data through falsified or forced credentials.