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What if genetic information could help in the battle against blood clots? One company, Unite Genomics, is trying to use genetic information and big data to help speed up the research being done on different disease states.
NATF sat down with the Chief Medical Officer of Unite Genomics, Omar Sinno, MD, MBA to give patients a look into the world of genomics, data science, and the important role patients play.
Unite Genomics is a data science company from the University of California Berkeley’s Big Data Genomics Group. The company focuses on enabling the analysis of large amounts of electronic health record data and patient genomes to accelerate the development of new treatments and cures for a wide range of diseases.
Q: If you were to describe Unite Genomics to a patient that thad no background in science, how would you describe what Unite Genomics does?
Our genomes hold the answers to many of our most challenging medical conditions. Unite Genomics collects health record data and saliva samples from thousands of patients with similar medical histories, performs genome sequencing on select samples, analyzes this data, and turns it into information that gives scientists and doctors an unprecedented view into how our bodies work. The information Unite produces shows scientists where in the genome to look for the next generation of therapies and cures, and it shows doctors how very small differences in our genomes will affect our response to the treatments they prescribe. Together, these impacts mean huge, underserved patient populations receiving new and improved therapies, and millions of individuals receiving the right treatment first, with no guesswork or trial and error.
Data plays a large role in Unite Genomics’ process. In order for Unite Genomics’ efforts to work, they rely on patients who have different diseases to donate their genetic information.
Q: Why is it important for patients to donate their genetic information to a company like yours?
By contributing your information to a company like Unite, you are joining millions of individuals in a movement to make the healthcare more tailor-fit to the individual and their unique genetic background. We want to move away from the need to try 3 different drugs before finding the one that will best work for you. We also want to limit the chance that you will be prescribed a drug that will cause a negative reaction. By donating your health data to companies like Unite, you are paving the way for a profound improvement in the future healthcare that our children and grandchildren will receive, and here is how: since the first human genome was sequenced in 2001, millions of patients have had their genomes sequenced and from those sequences, we have discovered over 20 million differences between those genomes. However, nearly two decades later, we still only understand the consequences of less than 1% of those differences. We can see the differences in individuals’ genomes very clearly but we don’t know how they impact our health. To learn how to use a patient’s individual genetic background to tailor care for that patient, we need to understand how these differences impact our bodies. And to do that, we need to look at thousands of patients who have similar genetics, and see how their health events compare to those of patients with different genetics. This all depends on the contribution of information to the data pool by thousands of thoughtful, determined patients who want to create a better future for themselves, their children, and their grandchildren.
Q: Why should patients donate their genetic information to Unite Genomics? What information do patients receive from Unite Genomics?
Unite Genomics has the most sophisticated data analysis abilities of any genomics company, so contributing to Unite will produce the greatest societal impact from your data. If you are selected, Unite Genomics sequences your genome for free (it currently costs $1000-$3000 to have your genome sequenced) so that you have it when it becomes useful to your doctor in directing your care.
It is important for patients to know that only those specifically selected will have their genome sequenced. This is not a service automatically provided to everyone who donates their information.
Q: People are concerned about giving away their genetic information because of privacy issues. How does Unite Genomics handle keeping this information protected?
The first question any patient should ask before contributing their data is: will my information be kept private? Unite Genomics de-identifies all data before anyone outside of Unite can interact with it. This means that we make sure that there is no way that anyone can tell that any piece of information is yours, or even that you contributed at all, unless you explicitly give us permission to tell them. We might ask your permission for this on a case by case basis, if we think it will significantly speed up the scientific discovery process in that particular instance.
The second question any patient should ask is: even if the data will not have any ties to me when people outside of Unite interact with it, will the sensitive data that exists within Unite be secure and protected from a data breach? We take this very seriously at Unite. Unite was cofounded by one of the world’s leading experts in cybersecurity and who has been teaching cybersecurity in the University of California, Berkeley’s Electrical Engineering and Computer Science Department for over two decades. Data security is built into everything we do. We store data in encrypted form, so that it looks like random gibberish to anyone but us, we use state of the art cybersecurity defenses, and we keep the encrypted data in locked data centers with security guards on duty 24 hours a day, 7 days a week.
Q: What future would you like to see for Unite Genomics? What is the company’s mission or goal?
We live in the Information Age, but we have yet to tap into the most powerful piece of information that ties us all together: our genomes. For every Unite employee, and every patient who contributes data to the Unite effort, Unite is a means to shift the discovery of life-changing medical discoveries into hyperspeed, helping scientists and doctors solve the presently unsolvable and create a much healthier future for all of us. If we all work together, we will see millions of patients receive therapies we helped discover, and millions more patients get the right treatment first. Just as today we look back and reflect at how different life was before we created the internet, soon we will look back and marvel at how many discoveries we made and lives we helped once we Unite.
Thank you, Dr. Sinno, for sharing your work with us!
To learn more about Unite Genomics visit www.unitegenomics.com.