Local Standards for Anonymization Practices in Health, Wellness, Accessibility, and Aging Research at CHI

When studying technologies pertaining to health, wellness, accessibility, and aging, researchers are often required to perform a balancing act between controlling and sharing sensitive data of the people in their studies and protecting the privacy of these participants. If the data can be anonymized and shared, it can boost the impact of the research by facilitating replication and extension. Despite anonymization, data reporting and sharing may lead to re-identification of participants, which can be particularly problematic when the research deals with sensitive topics, such as health. We analyzed 509 CHI papers in the domains of health, wellness, accessibility, and aging to examine data reporting and sharing practices. Our analysis revealed notable patterns and trends regarding the reporting of age, gender, participant types, sample sizes, methodology, ethical considerations, anonymization techniques, and data sharing. Based on our findings, we propose several suggestions for community standards and practices that could facilitate data reporting and sharing while limiting the privacy risks for study participants.

[1]  Carolyn Ellis,et al.  EMOTIONAL AND ETHICAL QUAGMIRES IN RETURNING TO THE FIELD , 1995 .

[2]  Christopher Frauenberger,et al.  Research Ethics in HCI: A Town Hall Meeting , 2017, CHI Extended Abstracts.

[3]  Alastair R. Beresford,et al.  Device analyzer: a privacy-aware platform to support research on the Android ecosystem , 2015, WISEC.

[4]  Gregory D. Abowd,et al.  Designing a social network to support the independence of young adults with autism , 2012, CSCW.

[5]  Katie A. Siek,et al.  "Be Grateful You Don't Have a Real Disease": Understanding Rare Disease Relationships , 2017, CHI.

[6]  Anne Marie Piper,et al.  A Critical Lens on Dementia and Design in HCI , 2017, CHI.

[7]  Alexandra K. Murphy,et al.  Ethnographic Masking in an Era of Data Transparency , 2016 .

[8]  Vitaly Shmatikov,et al.  Robust De-anonymization of Large Sparse Datasets , 2008, 2008 IEEE Symposium on Security and Privacy (sp 2008).

[9]  Connie K. Varnhagen,et al.  How Informed Is Online Informed Consent? , 2005, Ethics & behavior.

[10]  Scott E. Hudson,et al.  Helping Hands: Requirements for a Prototyping Methodology for Upper-limb Prosthetics Users , 2016, CHI.

[11]  Anne Marie Piper,et al.  "Tell It Like It Really Is": A Case of Online Content Creation and Sharing Among Older Adult Bloggers , 2016, CHI.

[12]  Ségolène Aymé,et al.  Empowerment of patients: lessons from the rare diseases community , 2008, The Lancet.

[13]  R. Meisenbach,et al.  Stigma Management Communication: A Theory and Agenda for Applied Research on How Individuals Manage Moments of Stigmatized Identity , 2010 .

[14]  R. DiClemente,et al.  Risk among men who have sex with men in the United States: a comparison of an Internet sample and a conventional outreach sample. , 2002, AIDS education and prevention : official publication of the International Society for AIDS Education.

[15]  John C. McCarthy,et al.  From Her Story, to Our Story: Digital Storytelling as Public Engagement around Abortion Rights Advocacy in Ireland , 2018, CHI.

[16]  Roy Sainsbury,et al.  Exploring ‘Quality’: Research Participants’ Perspectives on Verbatim Quotations , 2006 .

[17]  Katie A. Siek,et al.  Rare World: Towards Technology for Rare Diseases , 2015, CHI.

[18]  Nazanin Andalibi,et al.  Announcing Pregnancy Loss on Facebook: A Decision-Making Framework for Stigmatized Disclosures on Identified Social Network Sites , 2018, CHI.

[19]  Raquel Hill,et al.  Uniqueness and how it impacts privacy in health-related social science datasets , 2012, IHI '12.

[20]  Meredith Ringel Morris,et al.  "At times avuncular and cantankerous, with the reflexes of a mongoose": Understanding Self-Expression through Augmentative and Alternative Communication Devices , 2017, CSCW.

[21]  Catherine Pope,et al.  Ethics and Ethnography: An Experiential Account , 2003, Qualitative health research.

[22]  Munmun De Choudhury,et al.  Identity Management and Mental Health Discourse in Social Media , 2015, WWW.

[23]  Kay Connelly,et al.  From checking on to checking in: designing for low socio-economic status older adults , 2014, CHI.

[24]  Alastair R. Beresford,et al.  Device analyzer: large-scale mobile data collection , 2014, PERV.

[25]  Hideaki Kuzuoka,et al.  Understanding the conflicting demands of family caregivers caring for depressed family members , 2013, CHI.

[26]  Ian D. Walker,et al.  An assistive robotic table for older and post-stroke adults: results from participatory design and evaluation activities with clinical staff , 2014, CHI.

[27]  Shaun K. Kane,et al.  Collaborative Accessibility: How Blind and Sighted Companions Co-Create Accessible Home Spaces , 2015, CHI.

[28]  Cynthia Dwork,et al.  Differential Privacy: A Survey of Results , 2008, TAMC.

[29]  Latanya Sweeney,et al.  k-Anonymity: A Model for Protecting Privacy , 2002, Int. J. Uncertain. Fuzziness Knowl. Based Syst..

[30]  Caroline B. Brettell.  When They Read What We Write: The Politics of Ethnography , 1993 .

[31]  Joseph A. Maxwell,et al.  Qualitative Research Design: An Interactive Approach , 1996 .

[32]  Julie A. Kientz,et al.  Filtered Out , 2017, Proc. ACM Hum. Comput. Interact..

[33]  Stephen A. Rains.  The Implications of Stigma and Anonymity for Self-Disclosure in Health Blogs , 2014, Health communication.

[34]  Andrea G. Parker,et al.  Youth Advocacy in SNAs: Challenges for Addressing Health Disparities , 2016, CHI.

[35]  Kelly Caine,et al.  Local Standards for Sample Size at CHI , 2016, CHI.

[36]  Jina Huh,et al.  Health vlogger-viewer interaction in chronic illness management , 2013, CHI.

[37]  Roisin McNaney,et al.  Ethical Encounters in HCI: Implications for Research in Sensitive Settings , 2017, CHI Extended Abstracts.

[38]  R. Bedlack,et al.  Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration , 2013 .

[39]  G. Crow,et al.  Research Ethics and Data Quality: The Implications of Informed Consent , 2006 .

[40]  Nazanin Andalibi,et al.  Sensitive Self-disclosures, Responses, and Social Support on Instagram: The Case of #Depression , 2017, CSCW.

[41]  Meredith Ringel Morris,et al.  Investigating the appropriateness of social network question asking as a resource for blind users , 2013, CSCW.

[42]  Tiago Moreira,et al.  Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society , 2013 .

[43]  Gwen Ottinger,et al.  Undone Science: Charting Social Movement and Civil Society Challenges to Research Agenda Setting , 2010, Science, technology & human values.

[44]  Martin Tolich,et al.  Internal Confidentiality: When Confidentiality Assurances Fail Relational Informants , 2004 .

[45]  Manasi Vaidya,et al.  Ice bucket challenge cash may help derisk ALS drug research , 2014, Nature Medicine.

[46]  Munmun De Choudhury,et al.  Understanding Social Media Disclosures of Sexual Abuse Through the Lenses of Support Seeking and Anonymity , 2016, CHI.

[47]  Joan E. Sieber,et al.  Planning Ethically Responsible Research , 1992 .

[48]  Jeremy P. Birnholtz,et al.  "Is it Weird to Still Be a Virgin": Anonymous, Locally Targeted Questions on Facebook Confession Boards , 2015, CHI.

[49]  Iowa Tests,et al.  Meeting of the American Educational Research Association (New , 1988 .

[50]  Lora Oehlberg,et al.  A Guide to Using Asynchronous Remote Communities (ARC) for Researching Distributed Populations , 2017, EAI Endorsed Trans. Pervasive Health Technol..

[51]  Ben Jelen,et al.  Investigating the Suitability of the Asynchronous, Remote, Community-based Method for Pregnant and New Mothers , 2017, CHI.

[52]  Stacy M Carter,et al.  You Have to Make Something of All That Rubbish, Do You? An Empirical Investigation of the Social Process of Qualitative Research , 2008, Qualitative health research.

[53]  A. Bruckman.  Studying the amateur artist: A perspective on disguising data collected in human subjects research on the Internet , 2002, Ethics and Information Technology.

[54]  Michael J. Muller,et al.  Research Ethics for HCI: A Roundtable Discussion , 2018, CHI Extended Abstracts.

[55]  K. Kaiser,et al.  Protecting Respondent Confidentiality in Qualitative Research , 2009, Qualitative health research.

[56]  Wanda Pratt,et al.  Designing a Reclamation of Body and Health: Cancer Survivor Tattoos as Coping Ritual , 2018, CHI.

[57]  Leslie S. Liu,et al.  Improving communication and social support for caregivers of high-risk infants through mobile technologies , 2011, CSCW.

[58]  L. Jean Camp,et al.  DigiSwitch: design and evaluation of a device for older adults to preserve privacy while monitoring health at home , 2010, IHI.

[59]  R. Weiss.  Learning from strangers : the art and method of qualitative interview studies , 1995 .

[60]  Wanda Pratt,et al.  Catalyzing social support for breast cancer patients , 2010, CHI.

[61]  Bradley Malin,et al.  Re-identification of DNA through an automated linkage process , 2001, AMIA.

[62]  J. Lawton,et al.  Gaining and Maintaining Consent: Ethical Concerns Raised in a Study of Dying Patients , 2001, Qualitative health research.

[63]  Benjamin Baez,et al.  Confidentiality in qualitative research: reflections on secrets, power and agency , 2002 .

[64]  Roisin McNaney,et al.  Enabling the Participation of People with Parkinson's and their Caregivers in Co-Inquiry around Collectivist Health Technologies , 2018, CHI.

[65]  Sue Heath,et al.  Researching researchers: lessons for research ethics , 2006 .

[66]  K. Dyregrov.  Bereaved parents' experience of research participation. , 2004, Social science & medicine.

[67]  Jordan Beck,et al.  Defining Through Expansion: Conducting Asynchronous Remote Communities (ARC) Research with Stigmatized Groups , 2018, CHI.

[68]  Cheryl Tatano Beck.  Benefits of Participating in Internet Interviews: Women Helping Women , 2005, Qualitative health research.

[69]  Sun Young Park,et al.  Caring for caregivers: designing for integrality , 2013, CSCW.

[70]  P. Wicks.  The ALS Ice Bucket Challenge – Can a splash of water reinvigorate a field? , 2014, Amyotrophic lateral sclerosis & frontotemporal degeneration.

[71]  S. Sawyer,et al.  Research with bereaved parents: a question of how not why , 2006, Palliative medicine.

[72]  Tawfiq Ammari,et al.  Networked Empowerment on Facebook Groups for Parents of Children with Special Needs , 2015, CHI.

[73]  Anne Marie Piper,et al.  Designing for the Third Hand: Empowering Older Adults with Cognitive Impairment through Creating and Sharing , 2016, Conference on Designing Interactive Systems.

[74]  L. Gillam,et al.  Ethics, Reflexivity, and “Ethically Important Moments” in Research , 2004 .

[75]  Yufei Tao,et al.  Personalized privacy preservation , 2006, Privacy-Preserving Data Mining.

[76]  Odette Parry,et al.  Whose Data are They Anyway? , 2004 .