Fillion Emmanuelle, Torny Didier
Ecole des Hautes Etudes en Santé Publique, ARENES (UMR 5160), Rennes, France.
CNRS, CSI, Mines ParisTech (I3, UMR 9217), PSL University, Paris, France.
Reprod Biomed Soc Online. 2021 Oct 30;14:101-110. doi: 10.1016/j.rbms.2021.10.001. eCollection 2022 Mar.
From 1941, the synthetic oestrogen diethylstilbestrol (DES) was administered to millions of women around the world to prevent miscarriages. In 1971, a clear and direct link was shown between taking DES during pregnancy and its subsequent long-term morbid effects on offspring. In the last 50 years, the list of side effects of in-utero exposure to DES has grown to include cancer, infertility, significant prematurity and urogenital malformation, amongst others. Based on qualitative sociological research conducted between 2010 and 2013, compiling archives, judicial documents and 108 interviews, this article illustrates a continuous production of ignorance in France. By focusing on DES as a reproductive health technology, three aspects are stressed. First, in terms of recognition of adverse effects, despite DES being identified as a prototype for other technologies such as the contraceptive pill or hormone replacement therapy, there remained a strong reluctance to import knowledge from the USA on its dangers and risks. Second, there was indifference to transgenerational side effects: even when the most visible effects of DES were finally acknowledged, there was a lack of consideration of the health of descendants; an inability to deem the knowledge of these repercussions as emancipatory or potentially empowering for the offspring. Third, regarding the health care of DES daughters, an important propensity to undone science is highlighted, with notable indifference to the risks of hormonalization of the female body, even on the part of activists. Thus, decades after it was last given to pregnant women, the shadow of DES still lingers as a failed reproductive health technology.
从1941年起,合成雌激素己烯雌酚(DES)被用于全球数百万女性身上以预防流产。1971年,研究表明孕期服用DES与其对后代的长期不良影响之间存在明确而直接的联系。在过去的50年里,子宫内接触DES的副作用清单不断增加,包括癌症、不孕、严重早产和泌尿生殖系统畸形等。基于2010年至2013年进行的定性社会学研究,通过编纂档案、司法文件以及开展108次访谈,本文揭示了法国持续存在的无知现象。以DES作为一种生殖健康技术为切入点,着重强调三个方面。其一,在不良反应的认知方面,尽管DES被视为避孕药或激素替代疗法等其他技术的原型,但法国仍强烈抵触从美国引进有关其危害和风险的知识。其二,对跨代副作用漠不关心:即使DES最明显的影响最终得到承认,人们仍未考虑后代的健康;无法将这些影响的知识视为对后代具有解放意义或潜在赋权作用。其三,在DES女儿的医疗保健方面,突出了一种重要的否定科学的倾向,即使是维权人士也对女性身体激素化的风险明显漠不关心。因此,在DES最后一次被用于孕妇几十年后,作为一种失败的生殖健康技术,它的阴影依然存在。