When it comes to privacy, many of us rely on the belief that it is a big world out there and the likelihood that someone will dredge up data, be that a password or a genome, and tie it to us personally is small.
Recent research has shown, however, that we cannot hide amongst the crowd. In fact, more than 60 percent of Americans with European ancestry are identifiable through their DNA, whether or not they have ever submitted a sample to be sequenced. This potential inability to remain genomically private stems from the fact that by early 2019 an estimated 26 million consumers had been sequenced by the four leading commercial consumer DNA companies. Large amounts of this information has ended up in open data genomics databases such as GEDmatch which allow for the construction and analysis of family trees containing millions of individuals. Combining genomic databases with other information available online increasingly means that the re-identification of individuals from notionally aggregated and de-identified data sets is both possible and technically not that challenging.
For a long time, the hard push has been to bring together as much health data as possible in order to build better models to more effectively predict and treat disease. As we are finding with other pools of information, though, the questions we must now grapple with are not about can we do a certain thing, but rather, what are the unintended consequences arising from the creation of these data systems? What norms and policies should govern our use of certain types of information and the networks that contain them? What does it mean to be anonymous and for what purpose? Do people “own” their genomic data? Their behavioral data? The analysis of the intersection of these two data sets? Should the terms of use of individual commercial entities determine the boundaries of data ownership and use? What is the role of the Federal government (or state governments) in legislating these boundaries? What happens when the data crosses state or national borders?
The choices we make in answering these questions will go a long way toward determining our success in creating a health system that effectively serves individuals while protecting our most personal information.
What We’re Reading
US Healthcare System
Data standards may be wonky, but they will transform health care
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Violence And The US Health Care Sector: Burden And Response
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Waste in the US Health Care System
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Dog-Human Society
Are dogs just like us?
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Healthy Aging
Reversal of epigenetic aging and immunosenescent trends in humans
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Controlled-release mitochondrial protonophore (CRMP) reverses dyslipidemia and hepatic steatosis in dysmetabolic nonhuman primates
Science Translational Medicine >
Food as Medicine
It’s the Year 2038 — Here’s How We’ll Eat 20 Years in the Future
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A New Theory of Obesity
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Nutrition in medical education: a systematic review
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Entrepreneurship
A Taxonomy of Moats
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New Investments
The Mighty
Led $12 million Series B investment with participation from GGV Capital and Upfront Ventures.
The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities. The company has over 2 million registered users and is adding a new one every 20 seconds. Their stories are viewed and shared more than 90 million times a month.
Terray Therapeutics
Co-led Series Seed investment with Two Sigma Ventures, with participation from KdT Ventures.
Terray utilizes a proprietary, data-rich screening and optimization platform to develop small molecule therapeutics against historically “undruggable” targets. The company is always looking for talented computer scientists, chemists, and biologists to join the team.
Portfolio News
Aunt Bertha
Partnership with AARP for Connect2Affect Connected Communities
Business Wire > Becker’s Hospital Review > Technical.ly >
Atrium Health prioritizes social determinants of health in EHR to improve care and trim costs
HealthcareIT News >
Elemental Machines
Biocom announces fourth annual catalyst award winners
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Scratchpay
The power of purpose: how Struck Capital is backing ‘founders with purpose’ in LA’s venture capital scene
Forbes >
The Mighty
CGI Health partners with The Mighty for better patient insights
MM&M >
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Digitalis Portfolio Companies Are Hiring
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Digitalis Commons
The Digitalis Commons is a non-profit that partners with groups and individuals striving to address complex health problems by building solutions that are frontier-advancing, open-access, and scalable. Some of our current projects include:
Dart Grants
The Digitalis Commons offers quick, targeted $3,000 grants to individuals and groups working to develop public goods for better health.
To learn more about Dart Grants, visit digitaliscommons.org/dart-grants/.
