Research Consent

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 makeup and health. Our research will also help us to improve our services, and develop new ones.

What’s the purpose
Our Living DNA Global Research Project has been set up 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 where appropriate, however, only aggregated and anonymous data will be published. 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.

On some research, we will collaborate with leading academics and scientists. Your raw genetic data and other related information may be passed to researchers.

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, are designed to ensure the confidentiality of your data and samples.

It’s also important to know that you are in charge of how your DNA and how the data derived from it will be used. You can opt-out of participating in new research at any time.

Types of research
Our research is intended to support ongoing improvements in wellbeing, lifestyle and health-related services. We are also focusing on mapping the world’s genetic ancestry to show how interconnected we all are, utilising data to provide fine-scale ancestry information. We do this in order to maintain the cutting edge nature of our Living DNA product, delivering value and excellent results for our customers.

How it works
Living DNA customers will have the option to take part in surveys in their online portal, once they have signed up. These surveys will be quick and insight-driven, asking you questions, and explaining what type of research your answers will support. We will always be clear on this in our communications. You do not have to provide any information to us, but if you do not provide any information, we will not be able to include you in our research. You can also choose whether to respond to specific types of questions and so participate in that type of research. For example, you can choose whether or not to provide health information. If you provide information to us in response to our questions you will be consenting to us using that information for the purpose that we have indicated.

We will analyse your DNA and information derived from it in a de-identified manner without linking it to your name.

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.

Research funding
The Living DNA Global Research Project is currently being funded by Living DNA Ltd, a “for profit” company. As the project expands funds may be secured from other sources.

Future use
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 for the purpose of showing how all humans are connected and the role genetics places with our lifestyle and health.

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.

Risks and benefits of participating
The main risk of participating in the research project is in finding out information related to a project 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. Living DNA operates under ISO:27001 for information security and we take great care to ensure the integrity of your data so that the risk of loss or leakage is minimised.

Withdrawal of your consent
Living DNA has two levels of withdrawal of consent for research.

1. No Further Contact – This means that the research team at the Living DNA 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 team at research@livingdna.com as there are a number of options available.
   
   
2. No further use – In addition to no 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 unlikely to be 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.

1. Full anonymisation/deletion of data - information already used within a research project would remain, but we would delete any mechanisms which link you to the information. To the extent your information has not been used in a research project, or has been used in a way which means that we could delete it without impacting on the project, we will delete that it.

These withdrawal of consent options are for Living DNA research projects only and are unrelated to the consent settings you choose for the Living DNA commercial product.

Participants also have a range of rights under the General Data Protection Legislation. These are summarised in our Privacy Statement [link]. Our Privacy Statement also contains further information about how we use and protect information. It is important to flag that once your genetic data has been used in our research it is unlikely that we will be able to delete it.

Consent agreement
I have read and understood the purpose of Living DNA research I am aware that my participation is voluntary and I am free to withdraw at any time. I appreciate I may be contacted at different times to provide more information but am under no obligation to do so. I understand the type of research may change in the future provided that it fulfils the purpose of the project.

If you have any questions, then get in touch at research@livingdna.com