Living DNA Global Research Participant Agreement
At Living DNA we offer customers the ability to find out more about themselves by paying for DNA testing services. While this is our main business model, we also want our services to benefit society as a whole; for example, by research that helps us understand more about our global population make up and health.
If you are interested in participating in our research, please read on.
What’s the purpose
Our Living DNA Global Research Project has been setup to look at genetics to help understand how all humans are all connected, and the role genetics has in relation to our health and lifestyle. This may result in patents and other intellectual property for Living DNA. It is the intention to publish information on our findings; however only aggregated and anonymous data will be published.
Your raw genetic data and other related information may be passed to researchers. We hope that this will benefit society in the long term. Whilst the scope of research may change over time, the underlying intention will remain the same. We are working with leading academics and scientists to review your feedback.
The data and samples we collect and samples will only be used for ethically and scientifically approved research. Careful safeguards, in line with ISO:27001, ensures the confidentiality of your data and samples.
It’s also important to know that you are in charge of how your DNA and the data derived from it will be used, so you can opt out of this project at any time. We will analyse your DNA and information derived from it without linking it to your name. Also for this reason, it will not be possible for you to withdraw data that has already been analysed in a de-identified manner (because it will not be possible to know which data stems from you).
Types of research
The initial focus of the research is to map world genetic ancestry to show how interconnected we all are, utilizing data to provide fine scale ancestry information. We do this to in order to maintain the cutting edge nature of the Living DNA product, delivering value for our customers. In the medium-to-long term we see this supporting health and lifestyle related activities. Full details of research projects will be made available in the Research section of the Living DNA website, however the type and scope of research may change without notice to the participant.
The Living DNA Global Research Project is being funded by Living DNA Ltd, a “for profit” company. As the project expands, funds may be secured from other sources.
The scope and type of research that may be beneficial to society in the future may be different to that which is done today. We cannot foresee exactly how the database will be used in the future; data and samples may serve research that cannot yet be envisaged. In all cases we will be working with the purpose of showing how all humans are connected and the role genetics plays in our lifestyle and health. Any research conducted will only proceed if given ethical approval by independent assessors.
Re-contacting and feedback
As a participant, you will have access to your raw genetic data file, which can be downloaded from the secure Living DNA customer platform. You will be updated on the progress of any research and findings via the email address that is linked to your account. It is your responsibility to keep your contact information up-to-date on the Living DNA platform. We may ask you further questions for specific research projects and you will have the option to provide this information or not.
Risks and benefits of participating
The main risk of participating in the research project is in finding out information that you were not aware of, such as discovering your ethnicity is not as you thought, or that you are in a risk category for a health condition you were not aware of.
With all studies there is a risk of data loss or misplacement. The Living DNA Global Research Project operate under ISO:27001 for information security and take great care to ensure the integrity of your data so that the risk of loss or leakage is minimized.
Withdrawal of your consent
In-line with established DNA biobanks, the Living DNA Global Research Project has established two levels of withdrawal of consent.
- No Further Contact – This means that the research team at the Living DNA Global Research Project would no longer contact you directly but would have permission to retain and use information and samples previously provided. Those that choose this level of withdrawal leave the database intact, supporting researchers with the ability to use the information in a way that aims to bring a true benefit to society. Please contact the Living DNA Global Research Team at firstname.lastname@example.org as there are a number of options available.
- No Further Use – In addition to longer contacting the participant to obtain further information, any information and samples previously collected would not be available to researchers. If this option is chosen then your information will not be used in future research, but it is not possible to remove your data from research that has already begun. The data and information will be held, allowing you the option to change your consent in the future.
These withdrawal of consent options are for the Living DNA Global Research Project only and are unrelated to the consent settings you choose for the Living DNA commercial product.
V 1.1 Last Updated 20/09/2016