It has been tipped to revolutionize how healthcare is administered, to the point where medical treatments will more frequently be tailored to an individual, rather than utilizing drug therapies that are applied to the masses with similar symptoms and conditions.
At this point, it’s difficult to place a limit on what can be learned from genomic testing; yet, it’s safe to state that we are nowhere near it. In fact, in 2008 it was estimated that scientists only understood around 5% of the available information from a fully-sequenced genome. Today, scientists are most certainly advancing research and gaining knowledge at a faster pace than they were a decade ago, but they still have a lot to learn.
It’s exciting news for us as individuals, if only because it means vastly improved healthcare in the future. It’s arguably even more exciting for the scientific research community and pharmaceutical companies trying to make sense of genomic data. After all there are big bucks at stake for the companies that can develop improved medical solutions based on this data.
Pharmaceutical companies have been aware of the potential value of genomic data for some time. So have genomic testing companies, such as 23andMe, which have founded sustainable businesses based on the collection and sale of this data.
Like all types of data, when it comes to testing and analysis, significant quantities are needed. In the world of genomics, researchers not only want multiple data sets to test and study, but a diverse range is required to test for different things. One test may want samples from people with a family history of Alzheimer’s, while another study may want samples from females within a certain age range to try to identify causes and cures for breast cancer. As such, DNA testing companies, genomic data brokers and the new era of blockchain based genomic data storage and management platforms are trying to accumulate as many data sets as possible.
A few years ago, this race for masses of genomic data might have been considered a marathon, with companies like 23andme and AncestryDNA setting the pace, but today with more competitors entering the market, the lower cost of sequencing and the consumer trend to get tested, the race for genomic data now is more like a Grand Prix. There are a number of reasons contributing to the accelerated pace. Combined, they will expedite research to identify and develop better ways of treating individuals at lower costs. Below are a few of the reasons why companies are more anxious than ever to get their hands on large quantities of genomic data.
When the first human genome was sequenced in 2001, it cost around $2.7 billion. Improvements in technology have meant it now costs less than $1,000, and that price is expected to continue falling in the future. That means there are more scientific researchers and pharmaceutical companies completing more tests on human genomes than ever before. Hence, demand for this data has never been higher.
In exchange for their DNA samples and data, most DNA testing companies provide customers with an assessment of what was learned from the data. Most of the information relates to the ancestry or propensity to suffer from a disease. 23andMe, the global market leader in DNA testing and gathering, was given the all-clear by the FDA to reveal information about disease risk and their customer base has skyrocketed since. In 2017, it was reported the company had two million customers, up from 500,000 just two years prior. Consumer level DNA testing appears to be getting more mainstream press coverage too. It hit global news when Angelina Jolie revealed that she had a double mastectomy because a genomic test revealed that she was at a high-risk of developing breast cancer. The increased media exposure helped spark growth in the number of people testing themselves for diseases. This has helped generate the largest supply of genomic data that has ever been available.
Despite this new-found public fascination with what genomic data can teach us, there are some flaws which may be preventing many people from sharing their DNA.
A key concern surrounds the security of the data being stored by genomic testing companies and the privacy of those who submit this data.
DNA testing companies like 23andme, AncestryDNA and MyHeritage all state that they won’t share customer data without consent, but many consumers don’t realize that by not opting out, they’ve agreed to let the testing companies profit from their DNA by selling it. Whether done intentionally or not, once you’ve given the all-clear for testing companies to share your data, you’ll no longer have any idea about who actually has it and how safe they’re keeping it.
Your DNA is the most personal and valuable data you have. Unfortunately, most of the testing companies and labs storing and sharing your data won’t keep it any safer than the likes of Equifax or Yahoo! kept their customers’ financial and personal data. It could be argued that this data could be more distressing than being caught up in the data breaches of these two major firms. The recent MyHeritage data breach is a prime example of why we need better, more secure ways for storing and sharing this sensitive information.
Additionally, some people object to being the customer and the product supplier for the DNA testing companies and many have concerns about giving up control of their most private and valuable data. Thankfully, there are a number of blockchain startups poised to solve these problems for genomic data owners and buyers. Because of the immutable and transparent nature of blockchain, it’s considered a much safer and more secure way to store and transfer data. EncrypGen was the first of these tech startups pioneering this next gen genomic data industry. The company is well on it’s way to launching the world’s first genomic data marketplace and has already deployed it’s Beta of the Gene-Chain to help researchers and Pharma labs see how they will be able to search de-personalized DNA profiles. First and foremost, unlike the big DNA testing companies, EncrypGen’s business model puts individual data owners in control of their own data and facilitates transactions and secure transfers between data owners and data buyers. According to EncrypGen, CEO Dr. David Koepsell, “In addition to addressing concerns about genomic data ownership and security, we think next gen platforms like ours will help drive down the cost of data, making it more affordable for scientific researchers and Pharma labs all over the world. This will result in faster advancements in narrowly targeted drug therapies at a lower cost, ultimately increasing the efficiency and effectiveness of treatments and lowering the overall cost of healthcare.”
Blockchain is expected to disrupt dozens of industries in the coming years and there are likely more that have yet to be identified, but it’s clear that due to its added security, immutability and it’s ability to perform fast cross border transactions, that blockchain will reshape the way that our most sensitive and valuable data is stored and shared.
The race for #genomic #data is accelerating and with the development of the world’s first genomic data #marketplace nearly complete, #EncrypGen is in it to win. http://encrypgen.com/the-race-for-genomic-data/