Please scan the QR code from your DNA test kit

Consent to Participate in the Somos BioBank

You are being asked to give a sample to the SOMOS Biobank. The SOMOS Biobank has two arms, the Latino DNA Biobank and the Pan-American Biobank. The Latino DNA Biobank stores your DNA/Saliva sample for use of future research. The other arm, the Pan-American biobank, is used to store DNA, blood and tissue samples from indigenous nations in the Latin American continent for future research in the health sector. You may choose to participate or not participate at all.

Please read the following information carefully. There is no cost to participate in either the Latino DNA Biobank or Pan-American Biobank.

What is DNA?

DNA contains genetic information that acts as a blueprint for how parts of your body are made and work, determining such things as eye and hair color. DNA is made up of long strands of repeating letters that form a code. These letters, A, C, T and G represent individual chemical units that form DNA. The order in which these letters are written is very precise. In the same way that a spelling mistake in a word could change its meaning entirely (for example, mean and meat), a single change in the sequence of DNA can lead to a change in how the body works, which may lead to disease or influence how you respond to medication.

What is genetic testing?

Genetic testing involves taking your DNA sample and determining the sequence of your genetic code. Changes in your genetic code may help your healthcare team choose the best course of treatment for you.

What is Genetic Inheritance?

Both your mother and father contribute DNA sequences that make up your genetic code. This is called inheritance. Often, changes in DNA sequence can be passed from parent to offspring and it may be important to study not only your DNA, but also the DNA of your parents and other family members, to identify the underlying causes of disease.

LATINO DNA BIOBANK

What is involved in the Latino DNA Biobank?

SOMOS is offering you the opportunity to have a sample of your DNA/Saliva preserved for use in future clinical diagnostic testing. This DNA/Saliva will be stored by SOMOS and will solely be used for research and development.

A sample of your DNA will be obtained through your saliva sample once you purchase any of services offered by SOMOS.

What are the risks of providing a sample for the Latino DNA Biobank?

There are no risks associated with providing saliva samples.

Who will have access to my DNA sample?

Your DNA/Saliva sample will be stored by SOMOS for future clinical/research and development use. Until your sample is needed for testing, no access will be granted. When access to your DNA/Saliva sample is needed for further research, you will be notified before any use. Any results from that testing can be incorporated into your medical record only you approve.

What happens with the data generated through my samples?

The extracted data from your physical bio sample is used by SOMOS to generate reports as part of our service provision. Reports may include ancestry, genetic traits, health, disease risk scores or any other/similar genetic or health reports.  Your biological data will always be deidentified of any personal data for research or other purposes, SOMOS will have access to the collected data and agrees ensure in a strictly secure manner that individual level data is kept confidential, unless required to be released by law. Somos reserves the right to use

cryptographic technologies such as blockchain/PKI to ensure data governance, security and traceability towards its donors.

This data is generated for your exclusive benefit. If you shall choose to participate in any additional research studies or authorize any other use of your data, your data will be used only as per such authorization. You will be notified before any third party data sharing and you have to approve it before any of your data can be used.

SOMOS uses third party technologies to decentralize data storage and management such as GenoBank.io platform. All your permissions for data usage are recorded on the GenoBank.io platform and GenoBank.io is responsible to police participating laboratories and researchers against usage or retention of any physical bio sample or data.

The raw data generated in this Biobank consists of genetic and phenotypic data

and will not be sold or made commercially available. The intended use of this data is to be analyzed by the Parties, and future collaborators, all of whom are able to commercialize their findings as long as they are the results of data analysis and not individual-level genetic and/or phenotypic data.

Withdrawal of the SOMOS Biobank
You may choose to withdraw from the Latino DNA Biobank at any time by informing the SOMOS Biobank, GenoBank.io or directly using your blockchain identity (your personal ID card), received when you collected your Saliva sample. In all cases, your revocation will be recorded publicly and permanently on the GenoBank.io blockchain. Your revocation applies to SOMOS Biobank or any service provider and/or previous authorized parties that SOMOS Biobank had shared or jointly used your data.

If any deidentified data has been used and published as part of a research  protocol or scientific publication, SOMOS Biobank cannot erase such results.

How long will my DNA sample be available?

Your DNA/Saliva sample will be stored for as long as the SOMOS Biobank is in operation.

There is a possibility that DNA/Saliva samples may be lost in transit or will be inadequate for a future test, due to unforeseen power failures, equipment failures, floods, or other circumstances. It is also important to know that a DNA/Saliva sample is not permanent. If used for one test it may be depleted so that sufficient DNA/Saliva might not be available for additional testing. SOMOS is not liable for damage to or loss of a DNA sample.

WHAT IS THE PURPOSE OF THE SOMOS BIOBANK?

The purpose of the SOMOS Biobank is to collect, process, and store samples for research and/or until researchers need them to do research. A major obstacle in health research is that researchers normally study diseases in patients after the disease develops, by which time many changes have already taken place in the body. We would like to store blood and tissue samples if possible, along with health information obtained from your medical record or any other data points that can be integrated in the future, such as but not limited to wearables, smart sensors, etc.  so that SOMOS Biobank and/or researchers can study potential markers related to disease onset. This may help researchers to understand the causes of disease, how to treat them, and how disease might be prevented.

The samples we collect will act as a library for SOMOS biobank and/or researchers who are interested in studying a wide variety of human health conditions; instead of looking for volunteers for each new research study, researchers will have access to a large collection of blood, tissue and DNA samples along with medical histories all in one place, therefore greatly accelerating the pace of research.

Taking part in this SOMOS Biobank does not mean we think you will develop a disease. Your samples may be used as healthy control subjects in future research studies.

WHAT PERSONAL HEALTH INFORMATION WILL BE USED OR DISCLOSED?

You are authorizing SOMOS Biobank personnel to copy and use information contained in your medical record. The health information that may be used or disclosed for the research includes: results of physical examinations, medical history, lab tests, or certain health information indicating or relating to a particular condition.

ARE MY RECORDS CONFIDENTIAL?

The records of the SOMOS Biobank will be kept confidential in accordance with the GenoBank.io blockchain technology implementation.
With your permission, you may also be contacted in the future by SOMOS to invite you to take part in a research study. You may decide whether or not to take part in these future studies at that time.

Your samples may also be used by researchers who are not associated with SOMOS but they will not receive any identifying information about you.

ARE THERE BENEFITS TO TAKING PART?

While there may be no direct benefits to you, other people might benefit from knowledge gained from using your samples in future research studies.

WHO IS FUNDING THE PAN-AMERICAN BIOBANK?

The Pan-American Biobank is being sponsored by SOMOS and other commercial, research, funding and grant relationships, always under our strict data ownership and governance policies.

IS THIS PAN-AMERICAN BIOBANK VOLUNTARY?

Your participation is voluntary. You may choose not to participate or you may discontinue your participation at any time without penalty or loss of benefits to which you are otherwise entitled. If you decide to withdraw your participation, you must contact the SOMOS BioBank in writing or digitally. Any health information already obtained about you may still be used or disclosed as necessary to maintain the integrity or reliability of the current research. Your decision whether or not to participate will not affect your current or future relations with SOMOS Biobank.

WHO MAY I CONTACT IF I HAVE QUESTIONS?

For general questions about the Latino DNA Biobank and the Pan-American Biobank, please contact SOMOS Biobank at [email protected]

By clicking on the Submit button and registering into the SOMOS platform, you agree with the following: