Resources


We have had some helpful input from IDRC (the International Development Research Centre in Canada) in response to the workshop. This page groups some of these:

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Guidelines used in IDRC funding:

 The proposal guidelines for IDRC proposals currently ask for a discussion of ethical considerations in the methodology section as follows:

Ethical considerations: Projects that involve research on human subjects, the collection of private or personal information, or the participation of individuals in experiments must be designed in ways that protect the privacy, dignity, and integrity of those who are the subjects of research.

For projects involving research on human subjects, which raise ethical issues, IDRC requires that an independent ethical review committee, whether in the recipient institution or in the host country, approve ethical protocols. This applies most often in health research. In these cases, please attach a document certifying that ethical approval has been given. The proposal should also provide detailed information on the ethical dimensions of the research and how these are being handled.

For projects involving the collection of corporate or personal information, the proposal should provide details on how informed consent will be obtained and how the information will be kept confidential.

For projects that involve individuals participating in an experiment (such as farmers testing a new farming practice or community members responding to group questioning), provide information on the free consent of participants and how it will be obtained. Outline how research findings will be reported back to the people concerned.

Every grant agreement also includes Attachment A which outlines in section A4 ethical standards with regards to Information Gathering; Projects Involving Human Subjects in Biomedical Research; Projects Involving Biological Knowledge; Medical Treatments; and Projects Involving the Use of Animals.  

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Some thoughts on privacy issues arising in ICT4D projects, with some specific issues with health related research


Our ICT4D programs are supporting research projects on privacy; censorship and surveillance and cyber security that engage in some of the ethical dilemmas of the information society.   In the context of ICT4D I have suggested to the committee that the discourse on research ethics is being challenged not always by ICTD projects in particular but by the use of ICTs in any research project.  In particular we have discussed issues of privacy in relation to data storage and electronic transmission – particularly in cases where there are cross-country collaborations where personal information is being transmitted in between different legal jurisdictions which may have very different privacy laws.  We have also discussed questions of privacy and informed consent in relation to information gathering when projects have decided to use an open data policy.  While these practices are currently more common in ICT4D projects simply because they are using the technologies more, I feel it is something that cuts across all research activities as they increasing use information and communication technologies to gather, store, analyze and exchange data.  For example an eHealth project that I monitor required all the researchers to receive approval from a local ethics board.  These ethics boards certainly discussed ethical considerations related to information gathering, biomedical research and medical treatments but we feel certain that the digital privacy issues were not discussed.  Our partner at Privacy International will be providing them with a privacy assessment tool to help them look at digital privacy in eHealth.

Generally I feel that ICT4D projects encounter ethical considerations that are common in research for development.  In terms of scenarios I think you could consider a question raised by one of our researchers because he was receiving a lot of requests to use the application from people outside the test area:  In areas where eHealth is the only service that is available, what are the ethics of proceeding with the service without waiting for the result of studies? The question opened up an important dialogue about the tensions between research ethics and integrity and humanitarian approach.  This is certainly not unique to eHealth though.  In the discussion I shared with the group the debates that came up in the HIV-circumcision study:

Perhaps many of you are also familiar with the study on circumcision and HIV discussed  here (http://news.nationalgeographic.com/news/2005/07/0726_050726_circumcision_2.html). Note the paragraphs on the second page:

Half of the men in the study were randomly assigned to be circumcised, while the other half remained uncircumcised. The researchers found that, for every ten uncircumcised men in the study who contracted HIV, only about three uncircumcised [sic] men did so.

"This is very dramatic," Bailey said-so dramatic that the study was stopped in February, nine months before completion. The researchers had decided it would be unethical to proceed without offering the uncircumcised control group the chance to undergo the procedure.

and to see the flip side:  AIDS-prevention experts have had their hopes dashed after National Institutes of Health panel ruled that there was not need to stop the two ongoing studies of male //circumcision  as a method of reducing risk of HIV infection.

Read about it here: http://www.bio-medicine.org/medicine-news/Circumcision-Studies-to-Continue-Says-Health-Panel-11784-1/

I think this example is good at speaking to some of the ethical aspects of development research and in demonstrating that research ethics is a discourse.

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Training materials and background materials

In terms of training materials you may also be interested in looking at http://www.pre.ethics.gc.ca/english/tutorial/welcome.cfm  On-line Tutorial for the Tri-council Policy Statement: Ethical Conduct for Research Involving Humans.  

Another interesting reference to look at is section 6 of the Tri Council Policy Statement on Research involving Aboriginal Peoples (http://www.pre.ethics.gc.ca/english/policystatement/section6.cfm).  (The tri-council is three main scientific granting councils in Canada: the Canadian Institutes of Health Research(CIHR) ; The Social Sciences and Humanities Research Council of Canada (SSHRC); and the Natural Sciences and Engineering Research Council of Canada (NSERC).)

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