Ethical Considerations for 

Data Access and Use

Amy O’Hara, Georgetown University 

Federal Committee on Statistical Methodology 

Fall 2020

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Overview • What data are in scope? • What data uses are in scope? • Who is the public? • What is engagement? • Is engagement consent? • Who is doing this? • Goals and next actions

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What data are in scope?

• Administrative data 

• Not collected for statistical or research purposes 

• Government and private sector

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What data uses are in scope?

• Research, evaluation, evidence-building 

• Beyond the administrative purpose for which the data were captured 

• Government and private sector

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Who is the public?

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Stakeholders 

1. Government 

2. Civic groups 

3. Community leaders 

4. Researchers 

5. Data Intermediaries 

6. Data subjects 

https://fpf.org/wp-content/uploads/2018/09/FPF-AISP_Nothing-to-Hide.pdf
What is engagement?

Federal Statistical System 

System of Records Notices (SORNs)

Privacy Impact Assessments (PIAs)

Federal Register Notices (FRNs)

Advisory Committees

Websites (online engagement)

AISP Integrated Data Systems 

Engagement Channels

Social Media 

Website 

Publications (Newspapers, 

Magazines, Journals, etc.)

Conferences

Events

Initiatives 

Universities and academic 

institutions

ADRUK Strategic Hub 

Initial engagement with voluntary, 

community and social enterprises, 

NGOs, etc. to raise awareness of 

projects

Workshops or roundtables to gather 

detailed input on the proposed 

research questions and design, and 

flush out any overlooked issues

Direct engagement with the public 

to seek input from people whose 

data will be used and whose lives 

may be affected, to hear about the 

issues important to them, and how 

they feel their data could best be 

used

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https://fpf.org/wp-content/uploads/2018/09/

FPF-AISP_Nothing-to-Hide.pdf

https://www.adruk.org/fileadmin/uploads/adruk/

Trust_Security_and_Public_Interest-

_Striking_the_Balance-_ADR_UK_2020.pdf
Is engagement consent?

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https://misinforeview.hks.harvard.edu/article/big-data-bigger-risks/

brookings.edu/blog/techtank/2019/12/18/companies-not-people-should-bearthe-burden-of-protecting-data/
Tensions

Can we (legal) . . . . . . . . . . . . . . . . . . . Should we (ethical) 

Engagement . . . . . . . . . . . . . . . . . . . . . Involvement 

Notice . . . . . . . . . . . . . . . . . . . . . . . . . Consent 

Awareness . . . . . . . . . . . . . . . . . . . . . . Acceptance

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theodi.org/theory-of-change

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Examples? Who is doing this?

• Seattle Inclusive Outreach and Public Engagement Guide (link) 

• City of Fort Saskatchewan (link) 

• Digital Government New Zealand (link) 

• Information Commissioner’s Office UK (link) 

• Administrative Data Research United Kingdom (link)

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Need this in US!

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Finds that the public is broadly supportive of their administrative 

data being used for research, as long as 3 main criteria are met: 

1- Public interest: any research using administrative data is for the 

public interest and public benefit 

2- Privacy and security: data being used must be de-identified, and 

protections put in place to prevent re-identification or misuse 

3- Trust and transparency: trust of those holding the data is critical, 

and transparency around how that happens is critical. 

https://www.adruk.org/fileadmin/uploads/adruk/

Trust_Security_and_Public_Interest-_Striking_the_Balance-_ADR_UK_2020.pdf
US is already doing some things...

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https://aspe.hhs.gov/improving-mortality-datainfrastructure-patient-centered-outcomes-researchpcor

https://www.irs.gov/statistics/soi-tax-stats-2018-jsrp-selected-researchprojects
We should aspire to this

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https://www.adruk.org/our-work/health-wellbeing/ 

https://www.adruk.org/our-work/browse-all-projects/

identifying-the-links-between-hearing-loss-anddementia-212/
Inspiration for Federal Data Strategy?

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https://www.digital.govt.nz/standards-andguidance/engagement/online-engagement/

how-to-develop-an-online-engagementstrategy/
More inspiration

for the FDS

15 https://ico.org.uk/media/for-organisations/documents/1067/data_sharing_checklists.pdf
Whose job is it?

• Research using linked, anonymized administrative data is already 

occurring extensively. Should public engagement simply be a matter of 

informing the public that this is taking place, or must there be a level of 

permission granted from the public to the researcher to use their data, 

even if it anonymized? 

• Is that the source agency’s responsibility? 

• Are SORNs, PIAs, and FRNs enough? 

• Is that the researcher’s responsibility? 

• From what platform, with what standards? 

• Is that a data intermediary’s responsibility? 

• Federal Statistical Agencies, FSRDC Network, National Secure Data Service

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Next actions, especially for 

intermediaries

• Get intermediaries to satisfy the minimum requirements for 

transparency, requiring input from both data suppliers and data users 

• Assess the applicability of standards from bioethics to other data 

domains – do they fit justice, education, workforce, housing, business, 

social media, etc.? 

• Determine ways to highlight examples of research findings and the 

resulting public benefits, translating this for the public

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Next actions for ecosystem

• Public awareness to public acceptance 

• Consistent vocabulary 

• Consistent acknowledgements - Program was made possible by the

Corporation for Public Broadcasting and by Viewers Like You 

• Catalog of harms 

• Possible, probable, perceived 

• No animals were harmed 

• Risk of doing nothing 

• What if we don’t link data, evaluate programs, or analyze policies? 

• What if outcomes are unobserved? 

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amy.ohara@georgetown.edu

Visit our Administrative Data Research Initiative discovery site! 

https://adri.georgetown.edu/

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