A new (protected) future for genomic data
Kenneth Park, Vice President, Offering Development
Mar 05, 2019

It seems everywhere we turn, people are talking about the growing availability of genetic data. From off-the-shelf DNA kits and genealogy programs, to large scale population initiatives, it is getting easier, faster and cheaper to capture genomic data.

So now what?

There has long been an aspiration in medicine that genomic data holds the key to real precision medicine.  From feeling more confident about what drugs should be put into trials, to understanding what works, what doesn’t, for whom…and why, genomic data can deliver a truly precise view of human health. And so healthcare stakeholders – from drug manufacturers to policy makers – are seeking ways to conduct genomic research and make the critical connection to existing clinical data to accelerate scientific discovery and improve patient outcomes.

The barriers to entry are steep

Working with genotypic-phenotypic data (genomic data linked to clinical data) presents a host of daunting issues, from the size and complexity of the data sets needed to the technology and analytics necessary to ingest the data and draw reliable insights. The most challenging has been the question of patient privacy. Up to now it has been near impossible to remove identifying information from genomic data and ensure that it remains non-identified for research and analysis. In other words, there has always been the (legitimate) concern that genomic data could be re-identified and traced to the individual level. It is not an unfounded concern, especially following recent news of genomic data being used to capture dangerous criminals at large. Here, some will argue that the ends justify the means. In medicine, we can do better.

And although patient privacy rules are in effect and have worked on some levels, the science is, as usual, way ahead of legislation. That’s why it is critical to address the privacy issue now before a crisis occurs from an unintentional breach of confidentiality.

The potential is thrilling

The possibilities in using and linking genetic and clinical data are astounding and promise to deliver new, innovative thinking and solutions that can advance precision medicine and human health globally.

Imagine being able to link thousands of pieces of data to identify the clinically relevant data composite of a rare disease. Clues could emerge that could indicate early signs to watch for so that patients wouldn’t have to wait years to be diagnosed—and more importantly, could be identified and treated proactively before they even became patients.

What if you could understand how drugs really work, and who they work best for? What if you could ensure safer trials and limit people’s exposure to risk?

The aspirations are growing almost as fast as the data itself. So, a new solution is needed that brings the potential for genetic data into reality. One that democratizes genomic sequencing and creates an efficient, secure way to conduct research with reusable genomic and clinical databases while keeping patient privacy intact.

As the leading Human Data Science Company™, IQVIA is uniquely positioned to address the current challenges in the genomic research landscape, and take steps to enable the critical linkage of clinical and genomic data to improve research and healthcare delivery.

A new partnership and a breakthrough technology

In October 2018, IQVIA announced a partnership with Genomics England, a collaboration that enabled authorized researchers access to Genomics England’s patient-consented, non-identified data to create custom clinical-genomic data sets and run leading edge analytics on genomics and observable traits.

In February 2019, IQVIA announced the launch of a patented technology platform that protects genomic data privacy, at scale, further empowering researchers. Powered by the IQVIA CORE™, E360™ Genomics can manage the size and complexity of genomic data sets and draw insights from a myriad of covariates, all while preserving privacy.

Watch for the next blog in this series to learn more about the future of genomic data in clinical research.

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