Who Has Your DNA? Why Data Privacy Is the Next Battleground in Consumer Genetics

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.’”

Read the full story

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.

Learn more about GeneMatters.

Consideration

With 2021 well underway and with public markets still strong, we think it is an important time to highlight some of the key private market, venture investment themes that iSelect fund has identified for the year. We believe technologies transforming the Agriculture, Food and Wellness markets will flourish, with a focus on four areas: technologies that enable better food choices to drive better health outcomes, technologies that drive better, more profitable farm operations, technologies that drive the Consumerization of Healthcare, and biome-based treatment technologies. At iSelect, we invest for impact AND performance. We offer qualified investors access to emerging growth companies through our national venture capital strategy. Our unique structure allows our investors to continue to invest in these companies as they develop.

Timing

Why is now the right time for venture? The answer is that now is not explicitly the right time. Venture is something we need in our economy at all times. Now is not better than any other particular time. The question is, why ever stop? When we look at the challenges we’re facing in food and healthcare the reality is there is someone, somewhere who has an insight about how to build a product that will solve those problems. And if they put the right resources to it, they will succeed. As long as we need new technology to make life better or make our lives more enjoyable, we need venture capital to help fuel those entrepreneurs.

What is iSelect as a product?

iSelect is a very unique product, but when you break it into its parts it’s fairly easy to understand. On the front end we’re a traditional venture capital fund. We have a diligence process. We have an investment process. We have categories of industries where we have focus and real expertise, and we invest in companies in those areas that meet requirements for the fund. On the back end we’re unique in that we don’t raise a large amount of capital at one time and deploy it over the life of our fund. Each deal that we bring onto the fund, our investors have to prove and determine to invest in that deal. We have to constantly prove our diligence standards. It’s accessible, transparent and easy for investors to come in and see our comprehensive process.

What is the ideal iSelect company?

We are looking for founders that are passionate and we want the problem they’re trying to solve to be big, real, and painful. We want the solution to be revolutionary and we want our capital to be able to help them solve that problem. We want to know that they have customers involved and that the solution they’ve come up with actually meets those customers’ and market needs. And we want the team to be capital efficient with the money they’re spending.

What does the ideal iSelect company look like?

We’re looking for a company that has an opportunity to have a 10x return to our investment or greater in a period of three to seven years. What excites us at iSelect are companies that are solving big problems. We want companies that are going to be the Monsantos of the future. Not just in the size and the scope, but the impact they have on people’s lives. We want to create positive impacts on people’s lives, so we invest in areas like agricultural production and areas like producing healthy foods for our kids. They are problems that impact real people’s lives on a daily basis. That’s what we’re trying to do at iSelect. We’re trying to solve the big problems out there. Find ways to bring capital to the entrepreneurs who are the real heroes out there getting up every morning, beating away at these things that are problems that you and me and everyone else faces in their everyday lives.

What is iSelect?

iSelect is a venture capital firm. What that means is we look at hundreds and hundreds of different companies and we apply tough diligence standards to each of them, looking at whether the team has a good plan for growing the business, whether the team is qualified and credible, and more. We do that to resolve the few who provide the best opportunities for investors. And then iSelect takes that smaller set of investments and goes to investors who are interested in venture capital and provides a way for them to invest in these companies, either individually or all at once. We co-invest alongside other venture capitalists. We source transactions through to an exit where the company would become public or get bought. And we manage that whole investment process on behalf of our investors.