From:Melissa Hope
Date:September 13, 2005 11:48:42 AM EDT
To:bmcserieseditor@biomedcentral.com, editorial@biomedcentral.com, info@biomedcentral.com
Cc:Lori Heise , brachlis@ccnm.edu, Kumanan.Wilson@uhn.on.ca, sosingh@jhsph.edu, pwu@ccnm.edu, elainem.wong@gmail.com, emills@ccnm.edu
Subject:Letter in response to Mills et al's "Media reporting of tenofovir trials in Cambodia and Cameroon"
To the editor:
Mills et al("Media reporting of tenofovir trials in Cambodia and Cameroon" BMC International Health and Human Rights 2005, 5:6, 24 August 24, 2005) claim in their first sentence that PREP trials were "closed due to activist pressure on host country governments". Activists worked to improve trial conditions, which would have been a real victory. The reason these trials were closed was that researchers did not meet with or meet the needs of participants. This lack of engagement with participants is why participants became activists and reached out to their international support networks and the media.
If this article were limited to genuine media analysis, it might be valuable. However, this article descended into sniping about activists rather than the accuracy of print pieces, rendering it specious. After reading the sentence "The media reporting of the tenofovir trials may threaten trial recruitment and potentially stigmatize trial participation" in this article, I asked why they so easily assigned blame to media and activists rather than poor ethics, a lack of care, and inattention to the needs of their desired research subjects? The media and the activists did not prevent these trials from going forth — a lack of understanding of the conditions on the ground for marginalized populations on the part of researchers and a lack of care about this led to the closings of these trials.
The assertion that "high risk populations lack the decision-making abilities and education to entirely interpret clinical trial methodologies and the risks related to trial participation" is insulting. The authors should endeavor to educate themselves about high risk populations. Casting aspersions on the reasoning abilities of sex workers (the intended participants in the tenofovir PREP trials) will not help gain their participation in your research. Sex workers can reason and also have excellent communication and social skills. University educated Americans cannot be expected to understand and evaluate methodology either. Accessible education about research and methods is a crucial part of informed consent.
As advocates for the human rights of sex workers, we ask whether the Mills et al would sell out sex workers' best interests in trials in order to deliver PREP or microbicides or vaccines to market. Reading this piece, it is not hard to imagine exactly that happening. This article is indefensible.
— Women's Network for Unity
Phnom Penh, Cambodia
- Melissa Ditmore, Ph.D.
Acting Coordinator
Network of Sex Work Projects
Web: www.nswp.org
Email:rights@nswp.org - Maria McMahon
Vice President, Scarlet Alliance
Australian Sex Workers Association Inc.
PO Box 261
Darlinghurst NSW 1300
Tel:02 9326 9455
Fax:02 9326 9870
Web:www.scarletalliance.org.au - Bebe Loff, Ph.D.
Head, Human Rights and Bioethics
Department of Epidemiology & Preventive Medicine
Central & Eastern Clinical School
Monash University
The Alfred Melbourne, Victoria 3004
Australia
You can download this 2 page PDF resource above. This resource is in English.