SETTING THE STAGE FOR DIALOGUE

Different perspectives, different language

Both scientists and women's health advocates emphasized that there is neither one monolithic "scientists' perspective" nor one "women's perspective", but rather a broad spectrum of opinions within each community. They recognized as well that both groups are sometimes constrained from acting fully and consistently according to their perspectives. Women's health advocates often face lack of information, poor funding and various kinds of opposition or exclusion, while scientists face pressure from colleagues, donors or other agencies that have their own views on what research should be funded and carried out.

For instance, scientists working in the field of family planning have different approaches. Some might be termed "hardware enthusiasts" who believe that fertility regulation can be achieved through development of a wider range of effective, safe and acceptable contraceptive technologies. Some are "software advocates" who stress the importance of social and cultural variables and service delivery systems as factors determining fertility regulation. However, there are many who recognize that both hardware and software are needed. While some research agencies, like the Special Programme, have adopted the combined approach, many scientists have concentrated on the hardware, pursuing technological innovations.

From a biomedical scientist's point of view, the process of developing a fertility regulation method from toxicological testing to final clinical assessment is the accumulation of information on safety and efficacy. This process is in part dictated by drug regulatory agencies that require specific tests to establish the safety and efficacy of new products. Once through these stages, biomedical and social scientists, along with family planning programme managers continue to test safety and efficacy, as well as accept ability, through introductory trials. These trials can also help assess the appropriateness of the service delivery system, and develop an understanding of the concerns of users and the needs of the service providers. One of the problems some scientists encounter in this process is with communication and understanding among themselves. For example, social scientists are an essential interface between the community and biomedical scientists, because they study the qualitative aspects of users' and providers' needs. However, most biomedical scientists work with quantitative data and find it difficult to make use of qualitative data generated by social scientists.

Women's health advocates often conceptualize the issues in a completely different way. They see their bodies and their autonomy as the central concern. Women's health advocates thus start with women, not technology, and act according to at least three fundamental assumptions. First, they assume that women have the right to control not only their fertility but also their sexuality. Second, they believe that the exercise of this right requires not only improved methods of fertility regulation and health delivery systems, but also broader improvements in women's circumstances. Third, they know that women can and will make their own rational decisions about their fertility and sexuality if they have access to appropriate information and appropriate services. The basic objective for women's health advocates is thus to maximize women's choices and control over their fertility, their sexuality, their health and their lives as citizens.

Some scientists sympathize with this view, but women's health advocates feel that many scientists, along with policy makers, see fertility regulation primarily as a means to limit population growth and speed development, not to empower women. The relative weight assigned to population control compared to women's empowerment has profound effects on the criteria each group uses to set research and policy priorities. Scientists at the meeting agreed that modern methods of contraception have often been associated with the political dimensions of population control. They felt, however, that many scientists involved in this field have undertaken development of fertility regulation methods with the intention of broadening choices for users and protecting their health.

Scientists' concern is to establish safety of methods according to specific, measurable parameters. They assess toxicity, first in animals and then in carefully controlled studies in human volunteers. Subsequent studies address efficacy and short- to medium-term safety. Scientists are able to assess the long-term safety of a drug or device by epidemiological studies only after a product has been in use for many years. Women's health advocates tend to define safety in different terms. They give more priority to methods that have fewer side effects and that protect against sexually transmitted diseases and their consequences such as in fertility. While scientists have tended to give priority to methods which minimize users' control, women's health advocates prefer methods controlled by the user.

"On the question of side effects, there is always a tendency to over-emphasize the benefits and underplay the risks...Most of the time it is we women who undergo the risks and the benefits are taken by the pharmaceutical companies or by population control experts or governments of Third World countries". - Rani Bang

Women's health advocates and scientists may often use different language or as sign different meanings to some words. For instance, scientific language is notoriously incomprehensible to lay persons, and feminist terminology can be off putting to those who hold different views. Participants gave several examples of the ways in which language can inhibit communication and understanding.

Scientists pointed out that women have used the term "high tech" to refer to certain fertility regulation methods because they are provider-dependent (such as implants, injectable contraceptives or IUD's), while for scientists, these methods are technologically simple. In an other example, women's health advocates explained that the scientific community's use of the word "couples" is inappropriately restrictive. While fertility regulation should concern two people, the word "couple" implies established or married people, which excludes adolescents, the unmarried, and commercial sex workers. Further, scientists and programme planners conventionally define the "unmet need for family planning" in terms of "non-users at risk of unwanted or untimely pregnancy". A women's health advocates' definition would add to non-users, unsatisfied users, incorrect users, users of inappropriate methods, users and non-users with special needs (such as adolescents and sex workers), and most men. Other fundamental differences in the use of terms, such as "safety," "acceptability" and "efficacy" are explored in depth in later sections of this report.

Both scientists and women's health advocates at the meeting recognized that differences in perspectives and language have led to polarization between the two groups, which in turn has fostered distrust and criticism rather than creative collaboration and a search for shared values. Excluded from decision-making and the research process, many women have reacted negatively to decisions by researchers and policy-makers. This negative reaction has often resulted from anecdotal evidence of misuse of contraceptive methods in family planning programmes that do not offer women free and informed choice of fertility regulation methods, and that do not adequately protect women's health.

Scientists, if they have heard women's perspectives at all, have often heard only the extreme views, and many have concluded that it is best to ignore women's groups and the questions they raise. Scientists in general have not attempted to communicate with such groups. They have considered their primary concern to be to generate and publish objective information in the scientific literature. Very few scientists have considered how to convey their findings to women in a form that might allay their fears. It is thus not surprising that women's health advocates currently find that the realities of women's sexual and reproductive lives have had relatively little impact on the setting of research priorities in fertility regulation, or on population programmes and policies.

"It is our task as women's health advocates to assist scientists in the tremendous challenge of creating fertility regulation methods that take into account the welfare, sexuality, mental and physical health of women...Male researchers can themselves become more receptive, empathizing with women's biological experience, and open to qualities which have been socially attributed to women such as receptivity, sensitivity, intuition...". - Amparo Claro

Now however, scientists are realizing that involving women and women's health advocacy groups in their work may enhance the appropriateness and acceptability of the technologies they develop. They are seeking dialogue both in order to broaden the scope of their own work and to enable women's groups to better understand the process, the limitations and the results of scientific research. Women's health advocates, similarly, are seeking opportunities to understand scientists and programme managers, and to lend their experience and knowledge to the scientific process.

Who speaks for women? For whom do scientists speak?

While there was consensus about the need to bring women's perspectives and experiences to bear on the development, selection, and introduction of fertility regulation technologies, the participants debated the question of who can legitimately and effectively articulate those perspectives. A number of scientists questioned whether, for instance, women's health advocates, such as those at the meeting, represent the views of poor and rural women. Some participants pointed out that, although women's health advocates may be relatively well educated, most work directly with rural as well as urban women, including low income women. They are thus a legitimate source of information about both the content and the value of the variety of women's perspectives that exist. Each brings a point of view based on her own experiences, having listened to and worked with a wide range of women in her own country and internationally.

"I think a central characteristic [of women's health advocates] is that we are able not to just speak for ourselves as an individual woman, but we are able to say, "I might think this but I know other women think differently." - Judy Norsigian

Although some scientists remained skeptical that women's health advocates can represent the views of the majority of women, others recognized that they themselves have had little personal contact with the women who should benefit from the technologies they help develop. Ultimately, most participants agreed that women's health advocates and other women's groups can act as a bridge between women and scientists, helping to interpret scientists' findings to other women, and bringing women's concerns to the attention of the scientific community.

"On the [assertion] that urban women activists cannot really represent the views of rural women, I think that, while this can be true in some cases... you have a big gap between so-called "experts" and very poor women, rural and urban. Sometimes it is necessary to have a buffer zone which is what women's activists constitute. [Ideally,] you should have sensitive experts both male and female, then the question of who is representing [women] becomes irrelevant". - Adetoun Ilumoka

Moral dilemmas

The participants recognized that dialogue is urgently needed to resolve, or at least clarify, a fundamental dilemma in the population field that is present in other fields as well. Societal goals and strategies, as defined by policy-makers, do not necessarily coincide with the goals and needs of individuals. Those who focus on the societal level, emphasize providing services to, the largest number of people and have often sacrificed both service quality and choices among technologies. Those who focus on individual health and rights make service quality and choices among technologies paramount.

Women's health advocates raised a number of ethical questions during the course of the meeting that stem from this tension. Is it ethical, for example, to introduce fertility regulation methods without at the same time addressing other equally critical aspects of women's reproductive health, such as pregnancy care, sexuality or reproductive tract infection? Another question raised was whether it is morally acceptable to restrict access to safe abortion services and simply promote contraception, when contraceptive technologies are imperfect, failure rates and abortion rates are high, and the consequences of unsafe abortion are catastrophic for women.

Is it ethical and responsible to introduce contraceptive methods that are heavily dependent on skilled health personnel in countries where health services are generally poor? Is it ethical that developing and developed countries use different criteria and standards for the regulation and monitoring of technologies and services?

Do precarious health conditions in resource-poor settings place women at higher risk of side effects from certain contraceptives and, if so, is it ethical to introduce those methods where general health is poor? Do the developers of fertility regulation technologies have an obligation to consider these contextual factors when first initiating work on a new method and throughout the process? Are they or should they be concerned about the ways in which their technologies are likely to be used or abused by the state, service providers or women themselves?

Many of these questions pose profound dilemmas not easily resolved, and some of them may not be resolvable at all. But discussing them openly helped identify some areas (described below) where resolutions might be sought through collaboration between scientists and women's health advocates. In general, the participants recognized that, in any setting, factors such as the particular experiences of a people, their culture, and their behavior, the quality of the existing health care system, social norms and values about sexuality, fertility and gender roles, and the political and economic climate will all play critical roles in how a method is perceived and used and with what consequences for women. Participants agreed that every effort should be made to consider these factors when a decision is being made about the appropriateness of a particular method of fertility regulation.

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