For years, women's health advocates and the scientists who develop contraceptives have had what women's health advocate Lori Heise calls a "mutually suspicious relationship."
Advocates charged that scientists were too focused on fertility control, rather than women's reproductive health, and that women were left out of the technology development process. Many scientists, on the other hand, argued that the advocates oversimplified the scientific and ethical issues involved in contraceptive research.
"For a long time, users of reproductive technologies and designers and testers of reproductive technology have been in two separate camps," said Heise, who is co-director of the Health and Development Policy Project and a member of the Women's Health Advocates on Microbicides (WHAM).
WHAM and the Population Council are trying to change that by bringing the two groups together to plan and monitor the development of a microbicide to prevent transmission of HIV and other STDs.
First convened by the Population Council, the International Women's Health Coalition and the Pacific Institute for Women's Health in 1994, WHAM consists of 11 to 12 organizations and individuals. The organizers chose members to represent women's health networks and grassroots health and women's groups throughout the world, as well as because of their range of technical backgrounds.
WHAM members work directly with the Population Council, reviewing and commenting on plans and study protocols for testing the different microbicidal compounds now under development. But the group aims to have an even wider impact on the reproductive technology development process.
"We're trying to facilitate or catalyze discussion within the broader reproductive technology development field on ways to integrate women's needs and concerns into the technology development process," explained Heise.
WHAM members in different regions keep grassroots organizations informed about the status of microbicide research and solicit their recommendations on how such research should be conducted. They also represent women's concerns by serving on a number of advisory and review committees, including the World Health Organization's Interagency Working Group on Microbicide Development.
WHAM's first meeting in May 1994 gave members an opportunity to orient themselves to the science and politics of microbicide development by talking to scientists and legislators. The group met later in 1994 to develop a three-year work plan and hold a consultation on acceptability studies of microbicidal products.
The consultation and subsequent discussions affected the design and timing of the formulation preference study the Population Council is conducting in five countries, Heise said. WHAM members supported early acceptability research on various vaginal formulations (gel, film and inserts) to learn as much as possible about women's preferences. They also advocated the use of nonoxynol-9--which may offer some protection against HIV--instead of a placebo formulation.
WHAM and the Population Council are organizing a symposium in 1996 to help incorporate users' perspectives into the design of microbicide efficacy trials. Attention to the ethics of clinical trial design is particularly important because women who are most vulnerable to HIV infection are also extremely vulnerable to exploitation.
Grappling with the challenges involved in designing a scientifically rigorous, ethically sound clinical trial has fostered a new understanding between clinical researchers and women's health advocates, according to Heise. "When you really try to engage in struggling through an intellectual challenge together, that builds respect," she said. "I've seen real growth in mutual respect on both sides."
Heise believes both sides are learning from the process. Women's health advocates are challenging themselves to go "beyond critique" and become more sophisticated about the complexities of science, while the scientists are becoming more "in tune with the equally complex and totally different reality of women's lives in different parts of the world."
This dialogue between WHAM and the Population Council could serve as a model for greater collaboration among scientists, industry groups, and consumers and their advocates. "The larger potential of the process is a whole new way of going about technology development," Heise said.
--Kathleen Henry
