Ethics

Some people may wonder why it is important to examine records that were written by non-Indigenous people in order to understand First Nations, Métis and Inuit history. While the majority of government records tend to contain information that is non-Indigenous in origin, they can be read for the voices of First Nations, Métis and Inuit people – historians call this reading “against the grain.” In addition written records kept by those who managed healthcare systems often contain important information about the past that can be obtained through no other means than archival research. This includes the methods and approaches of institutions and descriptions of the care given to Indigenous people. The treatment of First Nations, Métis and Inuit people and their experiences in the hospitals is a matter of civic concern and public policy. It is thus vitally important that historical records be accessible to ethical and Indigenous-supported programs of research seeking to uncover this past.

The information contained within archives was produced by institutions operating without the consent of Indigenous people. As a result, it is all the more important that research on tuberculosis history follows ethical procedures, including not only university, provincial and national guidelines for ethical research, but also Indigenous research ethics. In practice, our procedures include the separation of identifying information, the secure storage of research materials, and consultation before publication and dissemination of knowledge gathered in the project.

Manitoba’s Personal Health Information Act

Manitoba Health, Seniors, and Active Living has initiated a review of the Personal Health Information Act (PHIA), which has not been updated since 2004.  PHIA governs who can access health information and under what circumstances. In May of 2017, Drs. Mary Jane McCallum and Scott de Groot submitted a series of recommendations to the PHIA Review Committee with the support of the University of Winnipeg Research Office and a number of scholars based at the University of Winnipeg and beyond. Here is a summary of the recommendations:

Addressing and Facilitating Health Historical Research in the Personal Health Information Act (PHIA):

1) PHIA should be revised to exempt personal health information concerning individuals who have been deceased for 20 years. PHIA should exempt organizational records that are over 100 years old.

2) Expand PHIA section concerning Health Research to affirm and facilitate health historical research.

3) Adapt security safeguards to allow for responsible archival research technologies including the use of photography for documents with no individual identifiers such as graphs and charts.

Improving the HIPC:

4) Balance the membership of the HIPC to include appointments of individuals who are experienced in health historical archival research and individuals who are experienced in Indigenous health research involving Personal Health Information.

Revising the Access to Information Request Form:

5) Revise the Access to Information Request Form in ways that suit archival research. This may involve rethinking the language of “intrusion” and developing a new approach that focuses on “use” of the records by the researcher and not their “intrusiveness.”

Responding to the Calls To Action:

6) We recommend that the Province build PHIA policy and procedures that are responsive to the Truth and Reconciliation Commission’s Calls for Action including working with archives and archivists to facilitate access to historical records to responsible research programs.

Improving Research Agreements:

7) Current research agreements governing historical research at archives are too long, punitive and discouraging to researchers. PHIA should simplify this by combining the application/agreement forms (as in Access To Information and Privacy, or ATIP, process at the National Archives, see Appendix I) or provide a research agreement template for archives to use.

Resolving research discrepancies and needs in the “pre-research” stage:

8) The Application for Access to Information requires researchers to have University Research Ethics Board (UREB) approval before Health Information Privacy Committee approval. The Tri-Council Policy Statement 2 (TCPS 2) considers archival research exempt from requiring REB approval. This discrepancy leads to confusion and delay.

9) The Province should fund training for critical social science and humanities researchers wanting to use archival records that include Personal Health Information (PHI) in their research. This should be available in graduate training but also online at appropriate websites. This training should cover the law, its application to historical archives, the application process and how to negotiate a Research Agreement.

To view the full submission to the PHIA Review Committee, click here.

 

 

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