Genetics is changing the world as we know it, and not only in the realm of healthcare and medical science.
Whether it’s 23andMe delivering specific details about our ancestry, genetic science being used to united people who have been switched at birth, or even DNA information being used to catch the Golden State Killer, there is much that genomics can now accomplish.
But this push into more consumer-oriented areas is raising new questions for the nascent field, particularly related to data privacy. That was the basis of a recent article in MobiHealthNews that examined how the industry is evolving and how quickly it is being forced to face these challenging questions.
“When it comes to privacy, stakes are high for the relatively new field of consumer genomics.
‘I think [privacy and data protection] is a hugely important topic. The story about Facebook and Cambridge Analytic broke a few months ago, but I feel like everyday there is more breaking news about it and it keeps getting worse,” Elaine Cheung, vice president of marketing and policy at Mindstrong Health and former head of business development at Genomics Health, said during a panel at BIO 2018. “Then related to the topic is the Golden State Killer and the public genealogy base used to track this man. Remarkable story, but it brings all sorts of different ethics questions. I think for these burgeoning spaces … you only get one shot at earning the public’s and patients’ trust and maintaining trusts. That is essential. Any breach of that impacts the whole space. So I think we have a collective responsibility to treat this very seriously.’
Consumer genomics tests have had their critics. For example, in November Senator Chuck Schumer (D-NY) called on the Federal Trade Commission to investigate and ensure that privacy policies in consumer genomic products are clear, transparent, and fair to consumers. Schumer cautioned that these test kits put consumer privacy at risk because DNA firms could potentially sell personal and genetic information.
But it isn’t just Schumer who is raising the alarm about where their genetic data goes and who owns it.
‘My biggest concern is privacy and security,’ Scripps Translational Science Institute founder and Director Dr. Eric Topol told MobiHealthNews. ‘It is their data and it shouldn’t be on massive servers that can be hacked. [Practices need to change] so that each person can control their data, and what portions of the data they want, and what portion of data they want to share. There is no place now for people to have all their data.’”
According to some estimates, there may be nearly 70,000 different genetic tests for more than 10,700 different conditions available on the market by 2022. These will be conducted on 16,226 different genes in nearly 500 labs by that point.
How can the industry manage this kind of expansion while maintaining total patient privacy and test accuracy?
The answer may lie in digital healthcare.
As of 2017, roughly seven million patients receive some level of medical care via telemedicine — which includes digital, online, mobile, video and other healthcare delivery technologies — representing a 20x increase in just the last five years.
GeneMatters, an iSelect portfolio company out of Minneapolis, is working to bring this technology to the genomic market, offering remote access to on-demand, expert genetic counselors via a proprietary SaaS platform that allows doctors to scale their testing services without losing the person-to-person connection that goes into effective genomics services.
It’s scalable. It’s customizable. And, as a SaaS product, GeneMatters can serve a wide range of different customers without sacrificing quality of care.
It’s also secure, ensure that patient data associated with the ever-increasing number of genetic tests available today stays where it belongs. With the patients.