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Ethical issues in data collection - Bureaucratic approval

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Most placed in the world require some sort of official approval for research activities involving contact with human subjects. The World Medical Association Declaration of Helsinki outlines general principles of ethics in human research which are almost universally accepted. (Click here to see the latest Helsinki statement. To go to the website with World Health Organization recommendations, click here.) However, because specific regulations still differ substantially between countries and even between institutions, you must investigate the local regulations before embarking on data collection.

Moreover, because many emergency-affected populations are at least partially dependent on outside aid for the basic necessities of life, and the groups providing this aid are often those sponsoring or carrying out research, these populations are considered more vulnerable to research coercion than other more independent populations. In the late 1990s, the Advisory Group on Research in Emergencies formulated recommendations for addressing the ethical issues of research in such populations. (Click here to see the report from the second meeting and here to see the report of the third meeting.)

Not all data collections from human subjects require formal ethical review. Generally, most public health activities are exempt because they are program evaluations or initial population assessments and are not designed to add to the general body of scientific knowledge, but this needs to be confirmed in each locality. If formal ethical review is necessary, the process needs to be started early, as final approval may take many months to obtain.