EDNA ships Data Owners (consumers & patients) EDNA platform participants a boxed Human DNA Collection Kit. Inside the box is a ORA Collect OCD-100 manufactured by DNA Genotek. The device is FDA certified for In Vitro Diagnostic Use with 510(k) clearances. Also in the box printed on the inside lid is a QR Code which points to this instructional video detailing proper use of the device. Also in the box is a printed pamphlet with clear instructions on how to properly use the device and a printed card detailing specific EDNA guidelines and steps helpful in getting the sample registered on the EDNA platform. Additionally, EDNA provides a business card with a phone number and email address should the user encounter any issues or have questions. Lastly, where possible, inside the box is a postage-paid return shipping label the user can affix to the outside of the box to return their collected sample to EDNA Laboratories in Wisconsin, USA.    

(product page link)
(instructional video link)
(collection product images)
(shipping labels – redacted)

Suffice it to say, the preparation of samples is marginally dependent on which service the consumer/patient has purchased. If the end-goal of EDNA’s data delivery is the EDNA Aurora product or the EDNA Avalon product, we approach extraction under divergent protocols. When we need to prepare for service, care is taken to first determine both sample viability and probability that the sample is in sufficient condition to deliver the targeted service. Should the sample fail our stringent quality contol examination post purification, the sample is immediately destroyed and the consumers account flagged for “re-sample”. Should the sample fail out QA test of quantity of DNA collected, the same procedure applies – we destroy the sample and get another. Both the Oxford Nanopore and PacBio user manuals detail with clear language what constitutes a “properly prepared sample”. EDNA strictly adheres to these directives

Each relationship/transaction between Researchers and Participants is managed by the following model:

1. Researcher Offer 
2. Participant Acceptance
3. Researcher Verification 
4. Escrow Exchange of Data & Payment (where applicable)
   
   

Informed Consent is collected by the platform and stored forever on the blockchain during step 2. Researchers have the option of either using the standard EDNA document, or providing their own during Step 1.

We realize this is a new way of acquiring DNA data, but we feel the fairness, privacy and transparency of blockchain transactions benefits serve everyone. 

When you create an offer for DNA data on the platform you may specify just about anything you are interested in gathering (See our offer creation form below). Potential participants will self-report they qualify for your study. At that point, the EDNA platform escrows both the data and any funds you are offering the participant. Should your offer be contingent on documentation, health records review, or any other proofs of qualification, the platform will await your verification of qualifications stamp before completing the escrow exchange. 

Participant data communicated to research is always in an encrypted state. All that is visible is the fact that a communication took place. 

Absolutely. Restrictions and limitations largely surround security of the data, and informed consent of the data owner. Please carefully read the Researchers Terms of Service. EDNA does not seek to restrict research, only to protect digital data ownership rights and to preserve the value of the data. Reselling data is strictly prohibited and carries with it penalties for violations  

Currently, EDNA sells consumers/patients 1 of 2 options in how we sequence their data. They can opt for the Aurora Service or the Avalon Service during sign-up. Most early-adopters of EDNA are offered a free upgrade from Aurora to Avalon including a saliva re-sample, Tax, Vat & Shipping.  The base statistics on the two comparative services are available here:

Aurora Service:

• NIH (GRCh38)
• 24 Chromosomes
• 42 not localized
• 127 unplaced
• 2,948,627,755 bp
• 161.4 Mbp of N’s

Avalon Service:

• T2T Consortium (CHM13)  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8997351/
•  24 Chromosomes 
• 0 not localized
• 0 unplaced
•  3,045,441,701 bp
• 11.5 Mbp of  N’s

Definitely. See the “Proposed Researcher Offer Submission” Form below this FAQ. If you find the current proposal design lacking in either functionality or convenience please feel free to drop us a note and we’ll do our best to accommodate your needs.   

Data from EDNA can be delivered stock in the following formats:

FASTA
FASTQ
BAM

If your tools require a different format, please let us know by contacting us and we’ll do our best to accommodate your needs.

Absolutely. We are always just an email or phone call away. Scroll down on our contact page. We fully expect most researchers to require at lease some assistance on boarding to the EDNA platform, setting up their free blockchain account and understanding how to submit an offer/request for data.

Cost is entirely up to the researcher. When you create an offer/request for data you specify what you are willing to spend per whole genome – if anything. 90% of that amount is passed though to the data owner (consumer or patient), and 10% is retained by EDNA to cover platform costs. 

EDNA does not charge researchers to participate on the platform, make offers, conduct searches, create accounts or for anything else for that matter.  

EDNA Laboratories is currently focused on acquiring CLIA certification and making use of the certification – consulting services provided by Lighthouse Lab Services to achieve the same. All samples collected, processed and/or converted to digital data by EDNA up to this moment in time are considered BETA data, and not available for transmittal outside of EDNA internal use for testing and quality control uses. Additionally, EDNA is actively recruiting for Sr. Laboratory Directors to send for training at Oxford Nanopore to be ONT- trained on use of the ONT instruments. Once CLIA certification is in place, EDNA will invite ONT to like-wise certify out lab. To follow our certification progress provide your email here. Do so, without worry – We despise spam just as much as you do, you will only be mailed when there is a fundamental change in EDNA’s certifications or licencing privileges. Equivalent PacBio & Illumina accreditations are in-flight as well. What you can count on, is that any data you take from the EDNA platform will be clearly marked as to what certifications were present at the time of the sample being converted to data. Zero surprises here.           

(Lighthouse)
(ONT Certification)
(PacBio Certification)

The EDNA-Stored genetic data used in your research is replicated and housed on dozens of servers around the world and immune to localized natural disasters. It is also immutable by very nature of the blockchain and can not be altered – only removed from the system by the data owner.

If you anticipate the need for a potential reproducer to re-acquire the base data, you should specify that as a condition of the offer when submitted. Alternately, if you are aware of which lab/researcher will be replicating your work you can name them (by authorized EDNA account name) during the creation of the offer       

At this point the brief answer is no.

Up to this point in time EDNA has been heavily focus on privacy and data security.  

Moving forward, we would certainly entertain the concept, as well as any design requests or ideas around how you would like to see collaboration and networking to function / be presented.  

Our Contact Page is the quickest way to get our attention and help. We encourage you to give it a try. 

All vetted and approved researchers who have posted at least one offer for data on the EDNA platform receive the personal cell phone number of our Founder and CEO. Should you find our standard support channels not responsive enough or able to resolve your issue, he encourages you to contact him directly.   

Getting started with EDNA is easy. Simply fill in this form, or click the “Free Signup” button below.