Knowledge is power; information is liberation [sharing clinical trials test results with subjects]

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Bulletin of the World Health Organization
Volume 91, Number 12, December 2013, 897-972http://www.who.int/bulletin/volumes/91/12/en/index.html

Editorial
Knowledge is power; information is liberation
Rachel Baggaley a, Jesus M Garcia Calleja a, Lawrence Marum b & Elizabeth Marum b
a. Department of HIV/AIDS, World Health Organization, avenue Appia 20, 1211 Geneva 27, Switzerland.
b. US Centers for Disease Control and Prevention, Lusaka, Zambia.
Bulletin of the World Health Organization 2013;91:898-898A. doi: http://dx.doi.org/10.2471/BLT.13.132464
http://www.who.int/bulletin/volumes/91/12/13-132464/en/index.html

Excerpt
In 1597 Francis Bacon stated that “knowledge itself is power”1 and Nelson Mandela, in the same vein, said in 2003 that “education is the most powerful weapon we can use to change the world”.2 In this issue of the Bulletin of the World Health Organization, Dermot Maher discusses the ethics of conducting population-based surveys involving clinical tests for research and surveillance purposes without routinely giving participants their test results, if these are positive, so that they can seek access to lifesaving treatment. Maher argues specifically that because antiretroviral treatment is now widely available, even in low- and middle-income countries, it is no longer ethical to fail to inform research participants when the result of a test for the detection of human immunodeficiency virus (HIV) infection turns out to be positive.3,4

According to the Council for International Organizations of Medical Sciences, “individual subjects will be informed of any finding that relates to their particular health status”.5 In 2004 and 2013, the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) issued ethical guidance for HIV surveillance that included a guiding principle particularly relevant to this discussion: in household or clinical surveys, “participants must be given the opportunity to be informed of their test results”.6 Currently, participants in many population-based surveys in which blood or other samples are collected for research purposes are “given the opportunity” to learn their test results, through testing services provided in the community or referral to local counselling and testing services, but are still allowed to “opt out” of learning their results…