Because good research needs good data

Christine Kenneally talks about the impact of data on real lives

Diana Sisu | 14 January 2019

1) What inspired you to take a look at loss of personal information? How did you become aware of the problem faced by people who grew up in orphanages?

As a journalist, I report widely on findings and issues of science and culture, though I find myself drawn again and again to issues of identity in different domains. I first learned about care-leavers, people who had grown up in orphanages or institutions, at an archivist conference in Brisbane in 2012. I attended a conference session where archivists spoke about the unique challenges of assisting care-leavers. The problems were numerous and quite extraordinary. In many cases, care-leavers had their personal information stripped from them when they entered a childcare institution. Typically the institution did little to restore the information, and even decades later, care-leavers were still struggling to recover information from government archives. People in their 60s and 70s and 80s were trying to find out what their parents names were, or whether they had siblings, or where they had come from. In many cases, that information existed, but the care-leavers couldn't access it. The archivists who were involved were a small but passionate group, who were doing everything in their power to restore basic personal information to the people in question. I was inspired by both the story of the care-leavers, and the work of the archivists.

2) Do you think we're letting ourselves defined by data too much? Must I know the exact date of birth to feel complete?

I don't know if there is anything inherent in knowing one's date of birth that is necessary to mental health or happiness. Most of humanity wouldn't have thought about it for most of our species history. Now it's the case, that almost everyone does know it, so for people who can't find that information, not knowing can hurt, and knowing has become an issue of rights and justice. On the personal front, it's hard to say. I can only speak for the people who want to know how many steps they've taken every day - it doesn't define me, and it's probably absurd, but I love knowing.

3) Years back could you have foreseen the power of data? I personally didn't, I've only just become aware of it. I just kept giving my personal data away for that next service or cool app.

Some visionaries, like novelist Neal Stephenson, saw both the power of data and its alarming misuse years before today's data culture finally dawned. For me, though, like you, I probably gave away way too much information before I started to think about it. Now, everyone, from legislators to corporations to schools, is playing catch-up. My greatest challenge is finding ways for my children to connect with their peers without simultaneously handing over access to their current and future lives to corporations. We have to think about everything, from user names to personal data to photographs to email addresses, and how easily these things can be cross-correlated.

4) In your abstract you mention 'responsible data curation'. What do you mean by that? If you had the power, what would you upgrade/change straight away?

In the context of care-leavers, it means, at least to begin with, the creation of their history, as so much was disappeared along the way. Because they are a group who has had to fight terrible injustice for a long time, because many of them suffered greatly in an institution, it also means acting with sensitivity and a sense of social justice in creating those data sets and making them accessible. Find & Connect is the prime example of this.

5) What will be your next project?

My recent article about an orphanage in the US, published in August at BuzzFeed News, took four years to report. It was over 25,000 words, but it many ways it just scraped the surface of the care-leaver, orphanage situation in the US. Next I want to write a book that tells the story of the care-leavers of the US and the world.

More about Christine's lecture at IDCC 2019

IDCC 2019 Programme