Attitudes toward Data Linkage, Privacy, Ethics and the Potential for Harm

1. Attitudes toward Data Linkage, Privacy, Ethics and the Potential for Harm Aleia Clark Fobia, Jennifer Hunter Childs, and Casey Eggleston Center for Behavioral Science Methods United States Census Bureau BigSurv18. Barcelona. October 2018

2. Privacy and Confidentiality Research • Primary research area in preparation for 2020 • Exploring opinions on use of administrative records • Quantitative collection vehicles • Gallup Census Module: Core and rotating questions since 2012 • Opt-in, non-probability panel • Qualitative data collections • Focus groups • Cognitive interviews • Web probing studies

3. Qualitative P&C Research

4. Themes Expectations of privacy and data security Expectations and perceptions of data linkage and sharing Concepts of harm Discussion of ethics

5. Expectations of Privacy • Low expectations of privacy and resignation to it • “Well, like, the government can access any information they'd like. So, I'm saying, you know, without, whether I allow them to or not. So, you know…” (Houston, English, 2016) • “All they're going to find out is I really like cherries a lot and, you know, I shop a lot. I'm a shop-a-holic and they know what I buy, and they know what I eat. And it doesn't bother me. Everything. It doesn't matter. They know exactly ... you know, if they want to know, they know. You're going to go to a hospital, they can get your records. They could read about it. Anything medically or whatever you're doing, a reprimand at work, they'll know about it. So it doesn't matter. You know, you've got to accept. That's the society we live in and it's been that way since I was born. I've been here all my life, and, you know, it's just something that I've accepted. But it doesn't really bother me.” (Non-Hispanic, Los Angeles 2016)

6. Expectations of Privacy • Perception that the government already knows everything • People think the government has access to everything that any agency collects at any time • “Big Brother” • “It goes in their computer memory banks and they can pull up anything on you.” (African-American, 50+, Savannah, 2015) • “Well, I think once you pay taxes, that’s it. Your information is available to any Federal agency that wants it.” (Maricopa, 50+, White, 2015)

7. Expectations of Privacy • Perception of age differences in expectations of privacy • Younger generation has “put themselves out there” and made their own information public. (Re-Identification, 2017) • Census data is sometimes seen as available/googleable • “I don’t think really I do because the questions that they ask me are stuff like practically – if someone was good at hacking computers or anything, they could probably find that through Facebook, so – and like she was saying, those are just questions that don’t necessarily get too personal with me as a person.” (18-29, White, Maricopa 2015) • General sense that information is “already out there.”

8. Perceptions of Data Sharing/Linkage • Do you think federal government agencies share a single central database of the name, address, and date of birth of U.S. residents, or not? • 53.9% said yes (Fall 2016)

9. Perceptions of Data Sharing/Linkage • Assumption that sharing is already happening • “Its been proven that the NSA was caught spying on American’s illegally so, I think it’s safe to assume that the government is sharing the information between agencies. I mean, that’s a given.” (OW Savannah 2015) • Perceived as loss of control over their information • “But if I don’t give my personal information to anyone, then I don’t feel like the next person ought to be doing it either. I want to be the one that gives it out and not just your random person or organization or whatever. If I give it to specific people or whatever then that’s where it should stay until I authorize for it to be elsewhere.”

10. Perceptions of Data Sharing/Linkage • Sharing will happen despite privacy preferences • “Down-the-line, it’s going to get passed through the different agencies. It’s just going to get so many Privacy Policies like going to the hospital or even signing up for healthcare – that was a big deal a couple of years ago. That’s probably where they got my phone number from. So – I’m pretty sure. So it’s all inter-connected where there’s nothing we can do to stop it, so we might as well just get used to it.” (Young white, 2015 Savannah)

11. Individual Harm • Financial concerns • “Concerns that I think about are an identity theft, stealing of sorts.” (Re-Identification Cog Testing 2018) • Safety concerns • “The safety, for instance for my daughter.” (Re-Identification Cog Testing 2018) • Violations of privacy • “I think they should ask permission first, before giving information to, to anyone asking for information about me, they should talk to me first and ask my permission, to give, give information to someone.” (Maricopa older Hispanic) • “We don't like it, but it probably goes on without our consent. So if you ask us do we like it? No, we don't like it. Can we stop it? Probably not.” (Houston 2016). • Other examples: Stalkers, bill collectors, marketers

12. Community Harm • Harmful decisions based on data • “Someone gathering data to make decisions out of my control. Raising property taxes based on a percentage of people of color living in this community which would have a negative effect on my children and myself as well.” (Re-Identification Cog Testing 2018) • Use of data for targeting or discrimination • “If someone is seeking to target people with disabled children or anything of that sort, or even elderly. If I were elderly and poor, I might be concerned. I would feel like maybe I could be a target if the data was breached.” (Re-Identification Cog Testing 2018) • “But if you are, for instance, if you're Latino, even if you're here with papers and all that, just the fact that somebody could get the [data], there could be adverse consequences to you in terms of harassment.” (Re-Identification, 2018)

13. Community Harm • Fear of data sharing with enforcement agencies • Immigration and Customs Enforcement • Populations missing from records and surveys • “Then you have the immigrants, the illegal immigrants and I think they are not going to want to fill everything on here. Because they do not want to get deported or have someone else deported in their family.” (Los Angeles, 2016) • Concepts are not mutually exclusive • Individuals are harmed when communities are harmed

14. Ethical Issues • Clarity about specific data uses vs. ability to put data to unexpected uses • Support for admin records use is highly context dependent • Research shows which frames increase favorability • Unexpected uses of data are critical for research and evaluation • Missing populations in records and surveys • Coverage remains an issue in both admin records and surveys • Respondents are sensitive to how a records-based approach will differentially affect communities • Larger ethical dilemma for big data

15. Aleia Clark Fobia aleia.yvonne.clark.fobia@census.gov Jennifer Hunter Childs jennifer.hunter.childs@census.gov Casey Eggleston casey.m.eggleston@census.gov