The Call for a Protocol – Our Process

The Research, Evaluation,  Data Collection, and Ethics (REDE) Protocol for Black Populations in Canada was informed by a few significant events namely,

1. the United Nations Declaration for the International Decade for People of African Descent (United Nations, 2015), which stresses the fulfillment of the social, cultural, civil, political, and human rights of people of African descent. This global conversation provides context for the timely and important project of taking stock of the state of research practices within Black communities and Canada’s leadership in supporting research that is ethical, beneficial, and relevant to the health and wellbeing of peoples of African descent in Canada.

2. The leadership taken by First Nations communities in crafting the Ownership, Control, Access, and Possession (OCAP) Principles, which stresses Indigenous self-determination in research processes (First Nations Centre, 2007). The OCAP Principles are specific to Turtle Island, and is a North American guide for ethical research by, with, about, and for Indigenous peoples. There are similar guides from Indigenous groups around the globe who reside in their own territories, including countries such as New Zealand, Australia, and South Africa. It is important that we as Black people, operating within the North American geography, actively conduct ourselves as treaty people on the territories of the Indigenous peoples in the place where we live.

3. This project is inspired by almost twenty years of research and community advocacy by LLana James, predating the United Nations Decade for People of African Descent, and the 2017 Report of the Working Group of Experts on People of African Descent on its mission to Canada. LLana – a longtime community worker, public intellectual, advocate, and scientist began to document and raise concerns about research, evaluation and data collection. She encouraged conversation and debate about how Black communities might set-out boundaries and protections for Black people within health care and social services more broadly. Her focus on the HIV infrastructure specifically arose from her work, eyewitness accounts, and experiences of the problematic practices and collaborations among and between researchers, healthcare providers, funders, and non-profit organizations.

4. A collective decision emerged from the founders of what would become the Black Life Collective, that an opportunity for Black folks to connect during the 2017 Canadian Association for HIV/AIDS Research (CAHR) Conference in Montreal, Quebec was imperative, given the harvesting of Black people for exploitative research (Walcott, 2016). Social media was used to invite all Black people in attendance at the conference to convene a conversation and identify some actions to address the rife anti-blackness in the research industrial complex. This conversation led to three central demands, namely that these experiences inform the formation of a protocol for ethical research with Black people; that this protocol be crafted within Black communities at the grassroots level to accurately represent community needs to prevent further exploitation by Black and non-Black leaders, researchers and staff implicated in the disenfranchisement and exploitation; and that an agenda for ethical, community-relevant research by, with, and for Black communities be put into action.

Part A: Context

Provides an overview of what leads to the need for a Research, Evaluation, Data Collection, and Ethics Protocol for Black People in Canada and Glossary

A1: On Black humanity 1.1-1.4

A2: On the Duty to safeguard the health and wellbeing of the community 2.1-2.2

A3: On the responsibility to the community 3.1-3.6

A4 On the collection, storage, and use data and biological material from Black people 4.1- 6.2

A5: On the respect for and valuation of Black life in research processes 7.0-9.0

Part B: Basic principles for all medical research 10.1-12.0

Part C: Additional principles for medical research combined with medical care 13-14.1