Sex Workers on STD research

Via Audacia Ray guest-blogging at Feministe:

There is a report on a survey of sex workers on how biomedical researchers can work more effectively with sex worker communities (link is to the PDF file of the research report). In many ways several of the points that are raised seem to me to be a good indicator of how to deal as a researcher with any traditionally marginalised or misrepresented community (I'm thinking of the suspicions held by many kinky folks here towards researchers).

The "Key Recommendations" were as follows:

1. Education about ethics and protocols is imperative. Sex workers described very little familiarity with these procedures. Therefore it is critical that researchers explain these procedures and complex ideas to participants using simple words in local languages. It is the researcher’s responsibility to communicate.
2. Consult local sex workers at each proposed location before beginning a trial. Acceptance and use of recommendations of local sex workers, and consideration of accommodations necessary for the lives of local sex workers will facilitate the research.
3. Demonstrate respect for sex workers. Researchers should actively work to incorporate recommendations for sex workers and also to socialize with and get to know them. For sex workers, misunderstandings may be attributed to stigma and discrimination even in situations where other factors may contribute to these.
4. Issues of compensation and time investment can compromise sex workers’ income and livelihood. Investment of time and energy in research takes away from sex workers earning time. Participation in research creates expenses which should be covered by research funding.
5. Permit sex workers to express themselves in environments in which they are comfortable and supported. Visit and meet with sex workers in sites where they work in large numbers—in order for them not to be intimidated. Barriers may be related also to literacy, facility with language, and the knowledge and information that potential trial participants might have. Good participatory practice and the extra efforts necessary to communicate will require time, energy and probably money.
6. Training and capacity building will be necessary for sex workers to enjoy good participatory practice in many contexts. Training and capacity building will lead to increased understanding and to greater participation and ability of sex workers to assume greater responsibility. Sex workers should contribute to design and implementation and analysis. Within participatory research, sex workers who share responsibility should share credit for work well‐done. Sex workers should be employed (hired, for pay) on the research team in management positions.
7. In some situations, contributions to communication resources, sex worker infrastructure and education, may be necessary. When sex workers have few resources, communication itself may be difficult and costly. For example, providing phones and other innovative solutions can facilitate communication and data collection in text or oral form.
8. Safe sex commodities including male and female condoms and personal lubricant must be easily available and affordable.
9. Provisions must be made for long‐term healthcare in the event of seroconversion and side effects.
10. Access to health care in general (beyond the trial) is a great concern. Some sex workers may not have access to health care. It is often more difficult for transgender persons and migrants to access appropriate healthcare. These obstacles need to be addressed in research projects.

I am loath to hijack this issue to talk about my own issues (e.g. kinky folks' relationship to researchers) although I do want to make those links where I think they are relevant (as I said, some of this is relevant to many marginalised communities). I will just observe that the issues of the subjects' understanding of ethical guidelines and protocols; direct communication with the community and accepting their recommendations; supportive and comfortable environments for the participants; and proper investment in communicating in ways appropriate to the participants' lifestyles, seem to me to be the main areas that are relevant to every part of research.

I want to highlight finally some passages quoted by the report, from respondents to the survey. These were listed under 10 "Good Participatory Principles" from the UNAIDS GPP document.

"Principle of Scientific and Ethical Integrity"

"Researchers need to be fluent in sex worker issues, on the ground issues, and not out of touch with the community. The community should develop a test of researchers before they are allowed to design a study."

"[The] best prevention is that we understand everything about the trials and what we should expect in the way of ethics. We then need a safe clear effective channel of complaints when the practice does not live up to the theory."

"To educate themselves and be aware of any power imbalances (class, race, level of discrimination in society) and really humbly do their best to prevent compromises."

The Principle of Respect

"I don't think it is the job of sex workers to figure out how to respect researchers."

"This should be the struggle of research teams after all they need us not us them."

"Exactly what is there for sex workers to gain by developing this relationship? Why do we have to solve their problems?"

"Let the sex workers choose their destiny and take care of your own business. Test your products on yourself."

"Why do you talk about communities? I am an individual and, by coincidence, I do the same work as others. Do researchers live in communities of researchers?"

"The researchers need to go and work in the sex industry for a while before they do the research. There needs to be an equal balance of sex workers and non‐sex workers on the research team. The researchers could do a short course on moral bias in science."

The Principle of Clear Roles

The report addresses what this means by saying, "To understand better how sex workers felt about the principle of clear roles, two questions were asked: How researchers can understand sex workers' expectations for a biomedical HIV prevention trial, and what might prevent sex workers from communicating their expectations within a trial."

With what might be taken as dry wit, the report then says, "Respondents were direct."

"Ask ‘what are your expectations?’ then WAIT, LISTEN and HEAR the answers."

"By explaining the trial, and what they hope to gain/learn from it and the effect the results might have, or what they hope them to be."

"Conduct…a pre‐study to see what sex workers really want, what it is that affects to us, and the dangers and risks to which we are exposed."

"If they would meet us where we are and that they would understand our reality."

"Be respectful even though sex workers have different priorities than researchers. Understanding that and sex workers' priorities will help find ways to move forward."

The report also noted that, "A frequently cited barrier able to prevent sex workers from communicating their expectations could be the perception or sense that they were being used, taken advantage of, or ignored."

There's a huge amount of material in the report, and if I were to go through the whole 65 pages adding more of these quotes, then this post would become a leviathan and I would probably never finish it!

It looks like being a very useful document and one with lessons that can be learned, as I said, for researchers not just in the specific field of AIDS research or biomedical science in general, and also for researchers not just dealing with sex workers, but anyone who is marginalised by social norms (be that kinky folks, trans folks, non-neurotypical, or whatever). I encourage people to read it.