Policy recommendations for addressing privacy challenges associated with cell-based research and interventions

Ubaka Ogbogu, Sarah Burningham, Adam Ollenberger, Kathryn Calder, Li Du, Khaled El Emam, Robyn Hyde-Lay, Rosario Isasi, Yann Joly, Ian Kerr, Bradley Malin, Michael McDonald, Steven Penney, Gayle Piat, Denis Claude Roy, Jeremy Sugarman, Suzanne Vercauteren, Griet Verhenneman, Lori West, Timothy Caulfield

Research output: Contribution to journalArticle

8 Citations (Scopus)

Abstract

Abstract. Background: The increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies and databases used for re-identification become affordable and more sophisticated. Policies that require ongoing linkage of cell lines to donors' clinical information for research and regulatory purposes, and existing practices that limit research participants' ability to control what is done with their genetic data, amplify the privacy concerns. Discussion. To date, the privacy issues associated with cell-based research and interventions have not received much attention in the academic and policymaking contexts. This paper, arising out of a multi-disciplinary workshop, aims to rectify this by outlining the issues, proposing novel governance strategies and policy recommendations, and identifying areas where further evidence is required to make sound policy decisions. The authors of this paper take the position that existing rules and norms can be reasonably extended to address privacy risks in this context without compromising emerging developments in the research environment, and that exceptions from such rules should be justified using a case-by-case approach. In developing new policies, the broader framework of regulations governing cell-based research and related areas must be taken into account, as well as the views of impacted groups, including scientists, research participants and the general public. Summary. This paper outlines deliberations at a policy development workshop focusing on privacy challenges associated with cell-based research and interventions. The paper provides an overview of these challenges, followed by a discussion of key themes and recommendations that emerged from discussions at the workshop. The paper concludes that privacy risks associated with cell-based research and interventions should be addressed through evidence-based policy reforms that account for both well-established legal and ethical norms and current knowledge about actual or anticipated harms. The authors also call for research studies that identify and address gaps in understanding of privacy risks.

Original languageEnglish (US)
Article number7
JournalBMC Medical Ethics
Volume15
Issue number1
DOIs
StatePublished - Feb 3 2014
Externally publishedYes

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Privacy
privacy
Research
Education
Tissue Donors
Cell Line
Policy Making
reform policy
deliberation
development policy
evidence
Databases
governance
Technology
regulation

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health(social science)
  • Health Policy

Cite this

Ogbogu, U., Burningham, S., Ollenberger, A., Calder, K., Du, L., El Emam, K., ... Caulfield, T. (2014). Policy recommendations for addressing privacy challenges associated with cell-based research and interventions. BMC Medical Ethics, 15(1), [7]. https://doi.org/10.1186/1472-6939-15-7

Policy recommendations for addressing privacy challenges associated with cell-based research and interventions. / Ogbogu, Ubaka; Burningham, Sarah; Ollenberger, Adam; Calder, Kathryn; Du, Li; El Emam, Khaled; Hyde-Lay, Robyn; Isasi, Rosario; Joly, Yann; Kerr, Ian; Malin, Bradley; McDonald, Michael; Penney, Steven; Piat, Gayle; Roy, Denis Claude; Sugarman, Jeremy; Vercauteren, Suzanne; Verhenneman, Griet; West, Lori; Caulfield, Timothy.

In: BMC Medical Ethics, Vol. 15, No. 1, 7, 03.02.2014.

Research output: Contribution to journalArticle

Ogbogu, U, Burningham, S, Ollenberger, A, Calder, K, Du, L, El Emam, K, Hyde-Lay, R, Isasi, R, Joly, Y, Kerr, I, Malin, B, McDonald, M, Penney, S, Piat, G, Roy, DC, Sugarman, J, Vercauteren, S, Verhenneman, G, West, L & Caulfield, T 2014, 'Policy recommendations for addressing privacy challenges associated with cell-based research and interventions', BMC Medical Ethics, vol. 15, no. 1, 7. https://doi.org/10.1186/1472-6939-15-7
Ogbogu, Ubaka ; Burningham, Sarah ; Ollenberger, Adam ; Calder, Kathryn ; Du, Li ; El Emam, Khaled ; Hyde-Lay, Robyn ; Isasi, Rosario ; Joly, Yann ; Kerr, Ian ; Malin, Bradley ; McDonald, Michael ; Penney, Steven ; Piat, Gayle ; Roy, Denis Claude ; Sugarman, Jeremy ; Vercauteren, Suzanne ; Verhenneman, Griet ; West, Lori ; Caulfield, Timothy. / Policy recommendations for addressing privacy challenges associated with cell-based research and interventions. In: BMC Medical Ethics. 2014 ; Vol. 15, No. 1.
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abstract = "Abstract. Background: The increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies and databases used for re-identification become affordable and more sophisticated. Policies that require ongoing linkage of cell lines to donors' clinical information for research and regulatory purposes, and existing practices that limit research participants' ability to control what is done with their genetic data, amplify the privacy concerns. Discussion. To date, the privacy issues associated with cell-based research and interventions have not received much attention in the academic and policymaking contexts. This paper, arising out of a multi-disciplinary workshop, aims to rectify this by outlining the issues, proposing novel governance strategies and policy recommendations, and identifying areas where further evidence is required to make sound policy decisions. The authors of this paper take the position that existing rules and norms can be reasonably extended to address privacy risks in this context without compromising emerging developments in the research environment, and that exceptions from such rules should be justified using a case-by-case approach. In developing new policies, the broader framework of regulations governing cell-based research and related areas must be taken into account, as well as the views of impacted groups, including scientists, research participants and the general public. Summary. This paper outlines deliberations at a policy development workshop focusing on privacy challenges associated with cell-based research and interventions. The paper provides an overview of these challenges, followed by a discussion of key themes and recommendations that emerged from discussions at the workshop. The paper concludes that privacy risks associated with cell-based research and interventions should be addressed through evidence-based policy reforms that account for both well-established legal and ethical norms and current knowledge about actual or anticipated harms. The authors also call for research studies that identify and address gaps in understanding of privacy risks.",
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