Ethical perspectives on accessing and sharing environment and health data

Access to reliable environmental health data is a significant barrier for conducting environmental epidemiological research. Although it is a global issue, researchers from the Global South face more challenges accessing administrative data on pollution, health, and any interventions as control measures. Hence, the researchers encounter difficulties generating credible evidence, and translating knowledge for appropriate policy reforms and actions. This virtual workshop aims to share the researchers’ personal experience in accessing environmental and health data, and to develop a joint statement for appropriate measures and actions.

Sign up here: https://www.viethconsulting.com/members/form.php?orgcode=ISEE&fid=5130857

Speakers
Keynote speaker: Prof. Colin L. Soskolne (Professor emeritus, University of Alberta, Canada)
Title: The Utility of Ethics and Philosophy in ISEE: How, What, and Whereto?
Bio: Born and raised in Johannesburg, South Africa, during the height of Apartheid, Colin Soskolne’s first-hand exposure to social injustice had a lasting impact on his life course. After obtaining his BSc (1970) and BSc Honours (1971) degrees from the University of the Witwatersrand, Johannesburg, he worked successively for the South African Human Sciences Research Council and then the Medical Research Council. He went on to obtain his PhD (Epidemiology) from the University of Pennsylvania in 1982. He relocated to Canada in 1982, employed by Ontario Cancer Care and the University of Toronto (1982–1985). He then moved to the University of Alberta in 1985. Ethics and philosophy paralleled his research and scholarly interests. Colin pioneered the development of ISEE's Ethics and Philosophy Committee in 1991, and also the development of ethics guidelines for the profession, first published in 1996, and then adopted by ISEE in 1999. Having witnessed injustice as a youth, and with the corrosive influence of powerful interests in science and public policy along the way, he recognized the even greater need for an ethical professional world—overcoming, with the support of key colleagues, substantial opposition in moving his ethics-promoting initiatives forward. After 28 years at the University of Alberta, he retired as Professor emeritus in 2013. He continued with eight years of intense voluntary service, pursuing, in leadership roles, the International Network for Epidemiology in Policy’s mission of “Integrity, Ethics, and Evidence in Policies Impacting Health.” Most recently, he received the ISEE 2021 Research Integrity Award. Colin’s career contributions in research, teaching, and service are accessible on his website (www.colinsoskolne.com).
 
Dr. A Kofi Amegah (Senior Lecturer of Epidemiology & Biostatistics & Lead of Public Health Research Group, Department of Biomedical Sciences, School of Allied Health Sciences, University of Cape Coast, Ghana)
Title: Ethical implications of the limited air pollution data and research evidence in Sub-Saharan Africa
There is a huge air quality data gap in Sub-Saharan Africa owing to the limited monitoring capacity on the continent. This is an ethical issue as it has meant lack of data for community advocacy to minimize exposure among vulnerable groups in the population and for influencing policy action to combat air pollution and avert deaths due to air pollution exposure in the population. Also, accessing the limited data from the responsible agencies for health research is problematic as a result of huge cost implications and the serious bureaucratic processes which is also an ethical issue as it has meant the absence of local evidence on air pollution health effects to convince governments and bilateral/multilaterals to invest in air pollution control for population health gains. The talk will use Ghana as a case study to detail these ethical issues and propose solutions.
 
Mr. Emile Whaibeh (PhD scholar, St. Joseph University, Lebanon and university instructor at the University of Balamand, Lebanon)
Title: Launching a Birth Cohort for Environmental Health Research in a Low-resource Setting: Ethical Perspectives and Lessons Learned from the EELI Study
The Middle East and North Africa (MENA) region is facing great environmental threats related to climate change, environmental degradation, and security and conflict issues. Against this backdrop, conducting much-needed environmental health research is complicated by the unavailability and inaccessibility of both environmental and health data. This presentation tackles the contextual challenges and opportunities from the perspective of early-career researchers working towards the advancement of this field in the region. More specifically, the speaker covers the situation in Lebanon as a case study and reflects on the methodology, ethical considerations, and lessons learned from the Environmental Exposures in Lebanese Infants (EELI) study.
 
Dr. Seyram Kaali (Research Fellow, Kintampo Health Research Centre, Ghana / PhD candidate, Swiss Tropical and Public Health Institute, Switzerland)
Title: Accessing health data for environmental research: challenges and opportunities
Worldwide, 12.6M deaths representing approximately 25% of global deaths are attributable to environmental risk factors annually. Sub-Saharan Africa (SSA) has the highest burden of attributed deaths per capita from environmental risks. Exposure to heavy metals, pesticides, ambient and household air pollution, poor sanitation and water contaminants is common and increasing in the region. Other environmental risks such as noise pollution, lack of green space, parks and walkways in sprawling urban centres have barely been studied. Existing datasets such as routinely collected data including hospital records of admissions and deaths, demographic and health surveillance data satellite data, and air pollution data from the increasing network of air pollution monitors in Africa can be used to study the burden of environmental risks on population health. Unfortunately, such datasets, especially health data, are not readily accessible in many SSA countries. This may be due to a lack of policy framework and/or operational guidelines for regulating access and use of health data. This talk will focus on the challenges and opportunities for accessing routine data and establishing data linkages for environmental health research.
 
Dr. Nivine Abbas (Public Health Department, Faculty of Health Sciences, University of Balamand - Main Campus, Lebanon)
Title: Challenges associated with environmental health data sharing related to privacy, confidentiality, and informed consent
Like all studies involving human subjects, environmental health research raises many different ethical issues. Although protecting privacy and confidentiality is one of the most important principles of research involving human subjects, it is not always easy to maintain.  One of the obstacles to releasing environmental data is how to ensure, as much as possible, the privacy of the research participants, as some of these data can be sensitive. Moreover, the informed consent process can play a critical role in addressing issues related to privacy and confidentiality. This presentation will tackle the challenges associated with environmental health data sharing and recommend appropriate actions related to protecting privacy and safeguarding confidentiality in environmental health research.
 
Dr. Adetoun Mustapha (Nigerian Institute of Medical Research; Lead City University, Nigeria)
Title: Ethical implications of secondary data analysis and helicopter research
This talk will discuss ethical requirements for secondary data analysis and challenges of helicopter research and impact on population studied.
 
Co-chairs (Organizing Committee): Prof. Atanu Sarkar¹, Dr. Ireneous N. Soyiri^2
1Professor (Environmental and Occupational Health), Division of Community Health and Humanities, Faculty of Medicine, Memorial University of Newfoundland and Labrador, Canada. Email: atanu.sarkar@med.mun.ca
²Senior Lecturer (Epidemiology and Applied Health Research Methods), Hull York Medical School, University of Hull, United Kingdom. Email: I.N.Soyiri@hull.ac.uk
 
Organizing Committee:
 
Professor Atanu Sarkar
Division of Community Health and Humanities, Faculty of Medicine, Memorial University of Newfoundland and Labrador, Canada.
 
Dr. Ireneous N. Soyiri
Hull York Medical School, University of Hull, United Kingdom.
 
Dr Ahmed Al-Delaimy
Department of Family and Community Medicine, College of Medicine, University of Anbar, Iraq
 
Dr Osuolale Olayinka
Department of Biological Sciences Department, Microbiology/Environmental Management and Toxicology Programme, Elizade University, Ilara-Mokin, Nigeria
 
Professor Ejaz Ahmad Khan
Department of Public Health, Health Services Academy, Prime Minister's National Health Complex, Park Road, Chak Shahzad, Islamabad, Pakistan
 
Dr Olufemi Aluko
Department of Community Health, Obafemi Awolowo University, Nigeria

Student volunteers
Yasamin Atabaki, Thaneswary Rajanderan, Rashmi Hazarika, Division of Community Health and Humanities, Faculty of Medicine, Memorial University of Newfoundland, Canada