Involving people in Precision Medicine Initiatives, Biobanks and more

By David Nicholson, Director, and Co-Founder of Living DNA

 

With the growing number of precision medicine and biobanking projects, participant recruitment and engagement is becoming increasingly time-consuming. People are asking what else can I get from being part of a project? What if by taking a lesson from the global DTC DNA testing firms such as Living DNA you could reduce the cost and time it takes with your participant recruitment? 

As a co-founder of Living DNA, we see over 80% of participants wanting to take part in research that has medical benefits. We’ve also heard how participants of non-DTC projects currently feel they are not kept informed of project updates and often don’t feel valued for the contribution they bring. 

Changing this perception is incredibly valuable on its own however what if having your study group segmented by fine-scale biogeographical ancestry could help you spot clear trends in study results? Or by applying cohort wide kinship analysis you can spot previously unlinked participants that could be skewing the data? These are just some of the benefits that partnering with Living DNA offers. 

 

Delivering Value to Participants

The success of any study or initiative lies with the participants involved, yet those very participants are expecting more in return for their data. Many consumers who’ve taken DNA tests, such as those with Living DNA, receive the value of from enriching family ancestry results as well as a high willingness (over 80%) to take part in the research.

The same opportunity is now available to all participants of studies and initiatives around the world by offering ancestry and wellbeing insights as part of the study. Participants have been shown how to associate a significant value with this information that comes at a minimal cost for those running the program or initiative. 

The rapid rise in the popularity of DTC ancestry testing services, something that helped Living DNA launch in the global market in 2016, has meant that 40 million people have taken a DTC test so far. A large number but, tiny in comparison to the billions of people that would not only find the information interesting but who would likely have an increased motivation to take part in a research project. 

This opportunity to build an ongoing and engaging study platform is transforming the way projects and clinical trials will be conducted in the future. 

 

How Living DNA’s technology works and what that means for your study

Whilst other technologies require hundreds of thousands of samples to provide meaningful results Living DNA’s technology requires sample numbers in the hundreds to thousands. This requirement of a smaller cohort is particularly important. Below we look at two main elements that can 

1. Finescale Biogeographical Ancestry – with the advent of truly personalized medicine, it’s important to understand not only the broad ancestry of your participants but through the understanding of fine-scale ancestry patterns programs that were potentially borderline in success are now able to show clear results with great success. 
   
   We already see in this FDA article advice on how best to collect ethnicity information for clinical trials – https://www.fda.gov/regulatory-information/search-fda-guidance-documents/collection-race-and-ethnicity-data-clinical-trials  however with such a diverse and rich background covering mixes of ancestry from around the world the value in having a measurement of ethnicity vs subjective information is becoming increasingly important.
   
   The ethnicity groupings help identify population-specific genetic backgrounds that have been seen to influence how people react to drugs, treatments and helps explain many phenotypes.
   
   Depending on the study, including what is investigated and with how many people, the stratification of tested individuals and/or reactions by ethnicity can mean the study is a success vs failure. In the future, we will see the ancestry analysis built into many study designs early on.
2. Kinship Analysis – using a sophisticated pipeline the Living DNA kinship analysis tools are able to analyze all participants in a study to re-build any relationships and genetic family trees out to 13degree relatives. This incredibly powerful tool allows you to cross-reference previously undocumented relationships that may be affecting your data in ways that didn’t make sense.
   
   If the genetic relationship of individuals in the cohort is part of the study design (family history with inherited diseases), analytical confirmation can add facts especially with the 3-8% rates of non-paternity. 

On the other hand, if a genetic relationship is unwanted in the study (diversity in sampling), relationship testing can reveal where this is not the case and add relevant information to the data.

 

End-to-End Solutions

Offering consumer-friendly reports to your participants can be as simple as having the existing genotype or WGS data analyzed by Living DNA. All data is handled securely and confidentially. 

For studies not yet established Living DNA and other DTC providers are able to co-ordinate, on a global scale in the case of Living DNA, sample collection, registration and genotyping. This incredibly efficient approach often offers a cost-saving over in house genotyping approach.