National Health Ethics Week: November 6-12

The COVID-19 pandemic has brought the importance of health ethics front and centre. This week (November 6 – 12) is National Health Ethics Week . This week provides an opportunity for health professionals, research and clinical ethics committees, community organizations, businesses, health institutions, schools and universities and members of the general public to participate in educational events that raise awareness about health ethics and reflect on health ethics issues facing Canadians.

Health ethics plays a crucial role in helping health professionals and policymakers make decisions with the health and wellbeing of patients, families and communities in mind. According to the WHO, the core principles of health ethics include: respect for persons, kindness, justice, utility, solidarity.

"The pandemic has highlighted the importance of public health ethics as so many of the measures undertaken to manage COVID-19 were applied at the population level," says Dr. Nancy Ondrusek, Director of Research and Ethics, Public Health Ontario and Adjunct Lecturer, Dalla Lana School of Public Health at the University of Toronto. "The focus of public health ethics is to guide decision-making at the population or community level, for example, by providing principles and frameworks to help balance the rights of individuals with the needs of the broader population and to promote equity."

What is public health ethics?
Public health ethics seeks to clarify, prioritize, and justify possible courses of public health investigation and action based on ethical principles, values, and scientific information. At Public Health Ontario (PHO), consideration of the principles of public health ethics is embedded in everything we do.  
PHO is committed to ensuring that its evidence-generating activities are carried out with the utmost respect for the rights and welfare of the individuals and communities who, through their participation or the use of their information, make this evidence generation possible.

Building on a strong foundation of public health focused ethics
The Framework for the Ethical Conduct of Public Health Initiatives is the foundation upon which PHO Ethics Services were built. The development of a new public health-focused ethics framework was an important starting point because existing research ethics guidance was developed mainly within the context of biomedical research, with emphasis on clinical trials and participant protections applied at the level of individuals. The framework was released as a PHO report in 2012, followed in 2014 by a peer-reviewed publication entitled, What makes public health studies ethical? Dissolving the boundary between research and practice.

The Framework was developed in consultation with Ontario public health unit (PHU) representatives and numerous public health and research ethics experts from across Canada and the US. Key components of the Framework are

• an interpretation of Canada’s national research ethics guidelines—entitled the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS)—through a public health lens, and
• a set of ten questions to guide ethics review of evidence-generating public health activities.

PHO’s Ethics Review Board (ERB) applies this public health lens and ten guiding questions in assessing the ethical acceptability of the projects it reviews. The paper describing PHO’s ethics framework is in the top 25% of articles of all research outputs scored by Altimetrics (an independent company that measures the "quality and quantity of online attention"), a statistic that speaks to the tremendous interest in and reach of this work.

PHO uses four levels of ethics review—the delegated and full board levels that are standard to all Research Ethics Boards, as well as two additional levels to expedite the review of low risks projects. Other innovations that support PHO’s novel approach to ethics review include the PHO Risk Screening Tool, Fast-Track Checklists and Exemption Criteria for very low-risk projects.

What is the role of the Ethics Services Team at PHO?
At PHO, the ethics team provides support services and resources at any stage during the life cycle of a project, from early development to dissemination of results. The team provides ethics support services for PHO and PHUs across Ontario. Ethics Services include providing ethics review through the PHO Ethics Review Board (ERB), ethics consultation, and support through education and the development of resources. For example, during the pandemic, the Ethics Services team and ERB Chair developed guidelines for Ethical Considerations Related to Projects Involving Direct Interaction with Participants during the COVID-19 Pandemic.

What is the role of the Public Health Ontario Ethics Review Board? 
PHO’s ERB is responsible for the ethics review of evidence-generating public health projects that involve human participants, their data or their biological materials. Projects may include research, evaluation, enhanced surveillance and quality improvement. The ERB ensures all projects are consistent with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans Second edition (TCPS 2), PHO’s Framework for the Ethical Conduct of Public Health Initiatives, and other relevant regulations, policies and guidelines. As an independent board, the ERB has the authority to approve, reject, propose modifications to or withdraw approval of any eligible projects submitted for review. The ERB provides guidance for developing best practices to address emerging ethical issues in public health evidence-generating initiatives across the province.

"The COVID-19 pandemic has shone a bright light on existing societal disparities that have resulted in the disproportionate impact of COVID-19 on some communities," says Dr. Elizabeth Peter, Chair of the Ethics Review Board at Public Health Ontario and Member, Joint Centre for Bioethics.
"The Ethics Review Board has been sensitive to this reality and continues to review protocols using an equity lens, such that participants are protected, and results are disseminated in a way that is not stigmatizing."

How is PHO continuing to engage with its stakeholders?
As efforts are underway across public health to revitalize pre-pandemic initiatives, PHO Ethics Services is seeing increased research activity amongst its stakeholders. PHUs requesting formal ethics board review for their projects are required to sign a Board of Record (BOR) agreement with PHO. Currently, 21 of Ontario’s 34 Public Health Units have signed a BOR with PHO, and several others are pending. The Ethics Service team is also focusing on enhancing the community of practice of public health practitioners involved in ethics support that was established in the years prior to the pandemic.

New resources for Community Engagement
The need for engagement with communities affected by research is widely recognized. While a large body of work has been developed addressing this topic, the focus has been mainly on research involving primary data collection directly from participants. Community engagement for population studies using secondary data has received much less attention. The Ethics Services team is currently conducting an environmental scan and consulting with PHO’s ERB, researchers and other internal and external experts to identify resource needs which will help develop guidance to inform community engagement for population studies using secondary data.

To learn more about ethics at PHO visit our ethics page.