Dr Ciara Staunton

Senior Researcher at the Institute for Biomedicine, Eurac Research (Italy)

Biography

Dr Ciara Staunton is a Senior Researcher at the Institute for Biomedicine, Eurac Research (Italy), a Consultant to the WHO on WHO guiding principles for human genome data sharing, and an Honorary Research Associate at the School of Law, University of KwaZulu-Natal. In addition, she is a member of many international advisory boards providing ethical and legal oversight on projects ranging from data science, AI, genomics, to biobanking and a member of the National Irish COVID-19 Biobank – Research Ethics Committee (NICB-REC). Previously Ciara has held consultancies for public health organisations such as the Global Fund, the South African National Institute for Communicable Diseases (NICD), the Foundation for Innovative New Diagnostics (FIND), and the Access to COVID-19 Tools Accelerator.

Ciara’s research focuses on the governance of new and emerging technologies, in particular stem cell research, genomic research and biobanking, and the use of health data in research. She has published widely on these topics and has been in receipt of grants from the Welcome Trust, the National Institutes of Health (NIH) and the Irish Research Council. Ciara’s research led to her being involved in the development of policy in Ireland, Bahrain and Africa.

From 2010-2013 she was a post-doctorate researcher at the Centre for Medical Ethics and Law, Stellenbosch University. During this time, she co-ordinated the Advancing Research Ethics in Southern Africa (ARESA) Program and was a member of the H3Africa Ethics and Regulatory Issues Working Group. She obtained her PhD from NUI, Galway for her thesis The Regulation of Stem Cell Research in Ireland.

Prior to starting her academic career, Ciara was a Legal Researcher at the Law Reform Commission of Ireland.

Recent Publications

Book Chapters

2024 C Staunton, AH Mazanderani, T Murray, G Sherman “Balancing the right to data protection with managing the care of HIV patients: experiences from the National Institute for Communicable Diseases, South Africa” in E Dove (ed) Confidentiality, Privacy, and Data Protection in Biomedicine: International Concepts and Issues (Routledge, 2024)
2023 C Staunton, R Adams, L Horn, M Labuschaigne “A framework to govern the use of health data for research in Africa: a South African perspective” in D Weisstub (ed) Medical Research Ethics: Challenges in the 21^st Century (Springer, 2022)
2022 A Parziale, C Staunton “Data controllers in biobank research” in Joel Faintuch and Salomao Faintuch (eds) Integrity of Scientific Research: Fraud, Misconduct and Fake News in the Academic, Medical and Social Environment (Springer, 2023)
2022 C Staunton “Open science, data sharing and pandemic preparedness” in J Grogan & A Donald (eds) The Routledge Handbook on Law and the COVID-19 Pandemic (Routledge, 2022)
2022 C Staunton, M Labuschaigne “The rationality of South Africa’s State of Disaster during COVID-19 in J Grogan & A Donald (eds) The Routledge Handbook on Law and the COVID-19 Pandemic (Routledge, 2022)
2023 M Labuschaigne, C Staunton “Article 18 of the Convention of Human Rights and Biomedicine: some reflections and observations” in A den Exter (eds)
2021 C Staunton “Individual rights in biobank research under GDPR”, S Slokenberga, O Tzortzatou, J Reichel ’GDPR and biobanking. Individual rights, public interest and research regulation across Europe’’ (Springer, 2021)
2016 C Staunton “Protecting the patient and embryos in vitro: the need for embryonic stem cell research regulations in Ireland”, M Donnelly & C Murray Ethical and legal debates in Irish healthcare: confronting complexities (Manchester University Press, 2016)

Peer-reviewed articles (published)

2023 P Kamath, N Gudi, C Staunton, AG Jacob, O John “Individual participant data sharing intentions and practices during the coronavirus disease-2019 pandemic: A rapid review” (2023) Data and Policy
2023 C Staunton, A Middleton, R Milne, P O Broin, C Calmasini “Governance, access, and harms: perspectives of the Irish public on the use of their genetic data for research” (2023) Wellcome Open Research 1 May 2023, 8:212
2022 S Mahomed, G Loots, C Staunton, “The role of data transfer agreements in ethically managing data sharing for research in South Africa” (2022) South African Journal of Bioethics and Law (2022) 15(1) South African Journal of Bioethics & Law 26
2022 C Staunton, S Slokenberga, A Parziale, D Mascalzoni “Appropriate safeguards & Article 89 of the GDPR: considerations for biobank, databank and genetic research” Frontiers in Genetics
2021 C Staunton, K Tschigg, G Sherman “Data protection, data management, and data sharing: stakeholder perspectives on the protection of personal health information in South Africa” (2001) PLOS One doi.org/10.1371/journal.pone.0260341
2021 C Staunton, C Andrés Barragán, S Canali, C Ho, S Leonelli, M Mayernik, B Prainsack, A Wonkham “Open science, data sharing and solidarity: who benefits?” History and Philosophy of Life Sciences (2021) History and Philosophy of Life Sciences 43:115
2021 S Mahomed, C Staunton ” Ethico-legal analysis of international sample and data sharing for genomic research during COVID-19: A South African perspective” (2021) Biolaw Journal
2021 C Staunton, E Hannay, J Oomen, M Johnson, R Kadam, R Sampath “The governance of personal data for COVID-19 response: perspective from the Access to COVID-19 Tools Accelerator” (2021) BMJ Global Health 6:e006095
2021 C Staunton, M Kosters, P Pramstaller, D Mascalzoni “Return of Research Results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants” J Community Genet (2021). https://doi.org/10.1007/s12687-021-00536-1
2021 C Staunton, R Adams, M Botes, J de Vries, M Labuschaigne, G Loots, S Mahomed, N Ni Loideain, A Olckers, MS Pepper, A Pope, M Ramsay “Enabling the use of health data for research: developing a POPIA Code of Conduct for research in South Africa” (2021) South African Journal of Bioethics and Law 14(1) 33
2021 C Staunton “ACT-Accelerator Data Governance Framework: balancing individual rights with the public interest in responding to COVID-19 (2021) South African Journal of Bioethics and Law (14)1: 4
2021 D Mascalzoni, R Biasiotto, M Borsche, N Brüggemann, A Di Grandi, M Gögele, S Frygner-Holm, C Klein, M Kösters, C Staunton, P Pramstaller, M Krawczak, A Hicks “Balancing scientific interests and participant rights in developing a recall by genotype (RbG) policy” European Journal of Human Genetics
2021 NS Munung, PC Chi, A Abayomi, M Afolabi, J Ambe, K Bonarwolo, F Kombe Kajoleh, C Staunton, S Ujewe, K Yusuf, G Tangwa “Perspectives of different stakeholders on data use and management in public health emergencies in sub-Saharan Africa: a meeting report” Wellcome Open Res 2021, 6:11
2020 C Staunton, C Swanepoel, M Labuschaigne “Between a rock and a hard place: COVID-19 and South Africa’s response” (2020) 7(1) Journal of Law and Biosciences
2020 C Staunton, R Adams, M Botes, ES Dove, L Horn, M Labuschaigne, G Loots, S Mahomed, A Olckers, MS Pepper, A Pope, M Ramsay, N Ni Loideain, J de Vries “Genomic research and privacy: a response to Thaldar & Townsend” (2020) 110(3) South African Medical Journal 175
2020 C Staunton, R Adams, D Anderson, T Croxton, D Kamuya, M Munene, C Swanepoel “Protection of Personal Information Act 2013 and data protection for health research in South Africa” (2020) International Data Privacy Law Journal 160-179
2020 C Staunton, J de Vries “The governance of genomic biobank research in Africa: reframing the regulatory tilt” (2020) Journal of Law and Bioscience doi.org/10.1093/jlb/lsz018
2019 P Tindana, A Yakubu, C Staunton, J de Vries, “Engaging Research Ethics Committees and Regulatory Authorities in the development of an Ethics and governance Framework for Genomic research in Africa: The H3Africa Model” (2019) 20(69) BMC Medical Ethics
2019 C Staunton, R Adams, M Botes, ES Dove, L Horn, M Labuschaigne, G Loots, S Mahomed, J Makuba, A Olckers, MS Pepper, A Pope, M Ramsay, N Ni Loideain, J de Vries “Safeguarding the future of genomic research in South Africa: broad consent and the Protection of Personal Information Act 2013” (2019) 109(7) South African Medical Journal 468
2019 C Staunton, A Abayomi, F Bassa, K Moodley, “Negotiating requests for reimbursement for community engagement: challenges in developing an educational video for genomic biobanking research in South Africa” (2019) 14(5) Journal of Empirical Human Research Ethics 501-503
2019 C Staunton, R Adams, A Abayomi, ES Dove, N Harriman, L Horn, M Labuschaigne, N Mulder, A Olckers, A Pope, C Swanopoel, N Ni Loideain, J de Vries “Ethical and practical issues to consider in the governance of Data Sharing for Genomic and Human Research Data in South Africa: a meeting report” AAS Open Res 2019, 2:15
2019 C Staunton, S Slokenberga, D Mascalzoni “The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks” European Journal of Human Genetics (2019) 27(8) European Journal of Human Genetics 1159
2019 C Staunton, E de Stadler “The Protection of Personal Information Act, 2013: Implications for Biobanks” (2019) 109(4) South African Medical Journal 232
2019 K Moodley, C Staunton, T Rossouw, M de Roubaix, Z Dube, D Skinner “The psychology of “cure” – unique challenges to consent processes in HIV cure research in South Africa BMC Medical Ethics (2019) 20(9) BMC Medical Ethics
2018 C Staunton “It’s about actually having a proactive regulatory framework versus a reactive one’: Stakeholder perspectives on the governance of embryonic stem cell research in Ireland” (2018) 24(2) Medico-Legal Journal of Ireland 97
2018 A Yakubu, P Tindana, A Matimba, S Munung, K Littler, C Staunton, J de Vries, “Model framework for governance of genomic research and biobanking in Africa – a content description” AAS Open Res 2018, 1:13
2018 M Hendricks, G Nair, N Garrett, Ciara Staunton, M Pather, D Baatjies, M Kidd, K Moodley “Evaluation of the impact of an educational video as a consent tool on knowledge about cure research among patients and caregivers at HIV clinics in South Africa” (2018) 4(2) Journal of Virus Eradication 103-107
2018 C Staunton, M deRoubaix, T Rossouw, J Black, D Baatijes, M Hendricks, K Moodley “Ethical challenges in developing an educational video to empower potential participants during consent processes in future HIV cure research in South Africa” (2018) Journal of Virus Eradication 99-102
2018 C Staunton “The Regulation of embryonic stem cell research in Ireland: Developments since the Commission on Assisted Human Reproduction” (2018) 18(1) Medical Law International 35-58
2018 C Staunton, P Tindana, M Hendricks, K Moodley “Rules of engagement: stakeholder perspectives on community engagement for genomic and biobanking research in South Africa” (2018) 19(13) BMC Medical Ethics
2017 J de Vries, N Munung, A Matimba, S McCrudy, O Ouwe Missi Oukem, C Staunton, P Tindana, A Yakubu “Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries” (2017) 18(8) BMC Medical Ethics
2016 K Moodley, T Rossouw, C Staunton, CJ Colvin, “Perspectives on the ethical and social implications of proposed HIV cure research: exploratory conversations from South Africa” (2016) 17(26) BMC Medical Ethics
2016 C Staunton “Harmonisation of biobank regulations in Africa: Lessons to be learned from Europe” (2016) 13(4) Contemporary Issues in Law 267–286
2016 C Staunton, K Moodley, “Community engagement for biobanking research: perspectives from Africa” (2016) 20(2) Asia Pacific Biotech News 14-26
2016 C Staunton, K Moodley, “Data mining and biological sample exportation from South Africa – a new wave of bio-exploitation under the guise of clinical care?” (2016) 106(2) South Africa Medical Journal 136–138
2016 K Moodley, C Staunton, M de Roubaix, M Cotton “HIV Cure Research in South Africa: A preliminary exploration of stakeholder perspectives” (2016) 28(4) AIDS Care 524–527
2016 J Nie, A Gilbertson, M de Roubaix, C Staunton, A van Niekerk, J Tucker, S Rennie, “Healing without Waging War: Beyond Military Metaphors in Medicine and HIV Cure Research” (2016) 16(10) American Journal of Bioethics 3-11
2016 C Staunton “Informed Consent for HIV cure research in South Africa: Issues to Consider” (2015) 16(3) BMC Medical Ethics
2015 J de Vries, A Abayomi, K Littler, E Madden, S McCurdy, O Ouwe Missi Oukem-Boyer, J Seeley, C Staunton, G Tangwa, P Tindana, J Troyer and The H3Africa Consortium “Addressing ethical issues in H3Africa research – the views of ethics committee members. Report of the H3Africa Ethics Consultation Meeting, 2nd of June 2014” (2015) 9(1) HUGO
2014 C Beyer, C Staunton, K Moodley “The implications of Methylphenidate use by healthy medical students and doctors in South Africa” (2014) 15(20) BMC Medical Ethics
2013 A Abayomi, A Christoffels, R Grewal, L Karam, C Rossouw, C Staunton, C Swanepoel, B van Rooyen “Challenges of Biobanking in South Africa to facilitate indigenous research in an environment burdened with HIV, TB and emerging non-communicable diseases” (2013) 11 (6) Biopreservation and Biobanking 347-354
2013 C Staunton, K Moodley “Challenges in biobank governance in Sub-Saharan Africa” (2013) 14(35) BMC Medical Ethics
2013 C Staunton “Brustle v Greenpeace, Embryonic Stem Cell Research and the European Court of Justice’s New Found Morality” [2013] Medical Law Review 21 (2), 310-319
2012 C Staunton “Issues Concerning Embryonic Stem Cell Research in Ireland” (2012) 18(1) Medico Legal Journal of Ireland 38
2011 C Staunton “As Easy as A, B and C: Will A, B and C v. Ireland Be Ireland’s Wake-up Call for Abortion Rights?” (2011) 18 European Journal of Health Law 205-219
2009 C Staunton “The Development of Health Care Planning in Ireland” (2009) 15(2) Medico Legal Journal of Ireland 74

Annotated Statutes

2019 C Staunton “Health (Regulation of Termination of Pregnancy) Act 2018” in Clark (ed.) Irish Current Law Statutes Annotated 2018 (Thomson Roundhall, 2019)
2014 C Staunton “Protection of Life in Pregnancy Act, 2013” in Clark (ed.) Irish Current Law Statutes Annotated 2013 (Thomson Round Hall, 2014)

Reports

Law Reform Commission Report Legal Aspects of Professional Home Care LRC 105-2011
Law Reform Commission Report Advance Care Directives LRC 94-2009
Law Reform Commission Consultation Paper Advance Care Directives LRC CP 51-2008

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