The Right to Genomic Privacy

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.



Digitalis Commons
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:

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To learn more about Dart Grants, visit digitaliscommons.org/dart-grants/.

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