into disarray after discovering hidden adoptions or infidelity in a
Christmas ancestry test.[38]
We’ve already seen how data about our online behaviour is
gathered and shared so that companies can target adverts.
Marketers don’t just measure how many people clicked on an ad;
they know what kind of person they are, where they came from, and
what they did next. By combining these datasets, they can piece
together how one thing influences another. The same approach is
common when analysing human genetic data. Rather than look at
genetic sequences in isolation, scientists will compare them with
information like ethnic background or medical history. The aim is to
uncover the patterns that link the different datasets. If researchers
know what these look like, they can predict things like ethnicity or
disease risk from the underlying genetic code. This is why genetic
testing companies like 23andMe have attracted so many investors.
They aren’t just collecting customers’ genetic data; they are
gathering information about who these people are, which makes it
possible to gain much deeper health insights.[39]
It’s not just for-profit companies that are building such datasets.
Between 2006 and 2010, half a million people volunteered for the UK
Biobank project, which aims to study patterns in genetics and health
over the coming decades. As the dataset grows and expands, it will
be accessible to teams around the globe, creating a valuable
scientific resource. Since 2017, thousands of researchers have
signed up to access the data, with projects investigating diseases,
injuries, nutrition, fitness, and mental health.[40]
There are huge benefits to sharing health information with
researchers. But if datasets are going to be accessible to multiple
groups, we need to think about how to protect people’s privacy. One
way to reduce this risk is to remove information that could be used to
identify participants. For example, when researchers get access to
medical datasets, personal information like name and address will
often have been removed. Even without such data, though, it may
still be possible to identify people. When Latanya Sweeney was a
graduate student at MIT in the mid-1990s, she suspected that if you