“An unconscionable delay”: warnings about DES ignored

6In April 1970, Dr Arthur Herbst and his colleagues published six case studies of gynaecological cancers (specifically, clear-cell adenocarcinoma) in young girls aged 15 to 22 in a prestigious American medical journal. The following year, the same doctors published a second article proving that these cancers had been caused by in utero exposure to diethylstilbestrol (DES) during the mother’s pregnancy. Introduced in 1941, the drug was then administered to millions of American women to prevent miscarriages. DES continued to be prescribed even after clinical trials in 1953 revealed its ineffectiveness. Thanks to the work of Dr Herbst and his colleagues, for the first time a clear and direct link was shown between taking a medicine during pregnancy and its subsequent morbid effect on offspring after a considerable timeframe had elapsed. Since then, the list of actual and potential side effects of in utero exposure to DES has grown steadily to include infertility, significant prematurity, urogenital malformations, cancers, psychiatric disorders, eating disorders, etc. Moreover, the populations affected have grown to include “DES daughters”, “DES sons” and even “DES grandchildren”.

7The history of DES in America can be summarised as a total lack of precaution and unheeded warnings, followed by the drug’s prohibition in 1971. [23] The drug’s trajectory in France repeated and exacerbated those tragic mistakes. DES was initially prescribed to pregnant women during the 1950s; it was recommended until 1976, although marginal use is documented until 1982. American research on the topic went largely unnoticed in France. When Dr Herbst spoke at a conference in Paris in 1972 in front of the French medical elite, most obstetrician-gynaecologists still refused to believe in the harmful effects of DES on their female patients.

8In 1981, alarmed by her patients’ problems with infertility and uterine malformation, Dr Anne Cabau launched an appeal to DES daughters in the magazine published by the health insurance provider MGEN. The results of her study were reprinted by Le Monde in February 1983 under the headline: “DES Children: A Monumental Mistake”. The article received widespread media coverage. Public institutions and the medical profession then took a highly reassuring stance with regard to the problems caused by DES in France, sometimes going so far as to accuse Dr Cabau of hidden advertising. A group of researchers commissioned by Inserm (the French Institute of Health and Medical Research) conducted a study and found that 200,000 women had been treated with DES in France, and 160,000 babies had been exposed to the drug in utero. The group issued a series of recommendations outlining how to inform and support patients. But these recommendations largely remained unheeded.

9In 1988, hired by the first patients’ association dedicated to DES issues, a group of clinicians and researchers developed a brochure about the dangers of DES under the auspices of the Ministry of Health. The vast majority of these experts opposed distributing the brochure to patients; its dissemination was consequently limited to healthcare professionals. The brochure’s effect was so limited that a second campaign was launched in 1992. In 2003 and 2010, worried by the persistent low levels of knowledge about DES among gynaecologists the Agence nationale de sécurité du médicament et des produits de santé (ANSM – French Agency for the Safety of Health Products) sent medical professionals a new information bulletin that contained a number of recommendations. Even today, however, some gynaecologists maintain that they have “never met a DES daughter”. Information on the drug and its long-term effects has often trickled down through non-specialised media outlets, rather than medical professionals. DES daughters have thus often suffered from lengthy periods of diagnostic error and inappropriate forms of potentially iatrogenic care, despite the fact that they displayed “typical” anomalies and clinical trajectories. [24]

10A similar lag compared to the US characterised DES victim associations in France. At the end of the 1970s, DES victims began to receive attention in the American legal arena which coincided with innovations within tort law. [25] Faced with the almost insurmountable difficulty of designating a responsible party in the American market, where many different pharmaceutical companies had sold DES, California’s Supreme Court invented the concept of market share liability. This new mechanism forced all the different companies to compensate the victims pro rata in accordance with their market share. [26] Market share liability has subsequently been the subject of heated debates and numerous legislative proposals over the course of the past three decades. [27] This ruling, which marked a radical departure from traditional liability law, had a two-fold impact. On one hand, it could apply not only to DES victims as a whole, but also to the victims of other chemical or pharmaceutical products – a potentially vast population. [28] On the other, the ruling marked the transition between a fault-based liability regime and a risk-based liability regime. [29]

11The French dispute started much later: the first complaint was filed in 1991, but it only reached a court of first instance in 2002, displaying a remarkable lack of speed for a civil case. This legal mobilisation was inseparable from the work of support and advocacy organisations. In 1994, Réseau DES (DES Network) was created, and its founder (whose daughter had been diagnosed with clear-cell adenocarcinoma) instigated the first civil court case. Two other associations have since been created, both active in the legal arena as well. Hhorages (Halte aux hormones artificielles dans le cadre de la grossesse – Stop the use of artificial hormones during pregnancy), founded in 2002, focuses on adverse psychological effects and the third-generation impact of taking artificial hormones during pregnancy. Since 2003, Les Filles DES (DES Daughters) has worked on fertility problems among women who were exposed to DES in the womb.

12As in the United States, the DES legal dispute in France has illustrated significant progress in the development of a DES cause. First of all, jurisprudence has forced defective goods liability to evolve, marking an undeniable shift in favour of victims’ rights. Moreover, this success has led to the unprecedented media coverage of DES as a public health issue, equivalent to the watershed moment in the case of asbestos. [30] Like many victims of occupational illnesses, [31] DES daughters were long invisible, epidemiologically, medically and socially speaking, a situation that only began to change with the first courtroom victories. [32]

Different modes of litigation

13In order to understand the legal action taken by DES victims, three complementary research strategies were employed. We examined the individual trajectories of victims, described the legal policies of different DES-related organisations, and analysed the case law established by appellate courts and the Court of Cassation. These strategies allowed us to combine material produced in the field of positive law and material regarding the “legal awareness” of ordinary litigants, [33] victims and their associations. The law can thus be analysed as a social practice, one that simultaneously takes into account its social uses and effects. In this, we follow in the footsteps of the work first carried out in France by the Centre universitaire de recherches sur l’action publique et le politique (CURAPP – University Research Centre on Public Action and Politics). [34]

14Individual stories were collected via lengthy, semi-structured qualitative interviews conducted with 77 individuals affected by DES (17 mothers, 3 fathers, 48 daughters, 2 sons, 4 spouses of DES daughters, 3 siblings of DES daughters). All aspects of their personal lives were addressed: their medical history and past interventions, their conjugal and familial situation, their career path, etc. The legal dimension, which is the only facet addressed in this article, was studied particularly closely for the 18 respondents who had filed a suit, but was nonetheless important for all the individuals interviewed, whether they had supported other victims through a legal process, considered taking legal recourse, or ultimately rejected the idea of taking action. In order to further nuance the results, observations were carried out during the hearings of Nanterre’s district court, the jurisdiction that has dealt with the quasi-totality of DES cases in the first instance court.

15In order to understand the legal policies of DES-related organisations, we drew on interviews with organisation leaders, observations conducted during meetings, and an analysis of organisation archives and information bulletins. Even if these associations were not originally formed as victims’ groups, [35] they all identify a drug and its wrongful administration as the cause of harm suffered. While they have not yet developed a full-fledged legal division, as workers’ rights organisations have done, [36] these associations have nonetheless become a sort of collective laboratory for legal strategies. Although members from France’s Réseau DES filed the first suits, the association generally maintains a very prudent stance towards the courts. Hoping to prevent women from launching into doomed legal proceedings, in 2011 Réseau DES partnered with the FNATH: [37] lawyers from the FNATH now evaluate case files prior to legal proceedings being instigated, in exchange for a relatively modest flat fee. At the other end of the spectrum, however, Les Filles DES has encouraged legal action, establishing a privileged relationship with one lawyer who has been involved in DES cases for over twenty years. The group organises meetings with this lawyer in order to encourage victims to take legal action. Finally, Hhorages is the only one of the three organisations to promote criminal proceedings. All of their cases are handled by a criminal lawyer, known for representing the victims of various public health scandals. Moreover, the organisation, as well as some its members, have acted as parties civiles in a criminal case. Although the organisations’ different positions with regard to the law are relatively clear-cut, victims, on the other hand, seem to circulate freely from one organisation to another, whether in search of information, experience sharing, supporting other victims, or raising awareness about court rulings.

16Finally, our analysis of the existing jurisprudence is based on the rulings of appellate courts and the Court of Cassation found in the Jurica, Lexbase and Dalloz databases, to which were added trial court decisions in the first instance found in local court registries. First instance rulings that did not lead to any appeals remain largely unknown, as they are only available upon individual request to court registries with the citation of the relevant case number. [38] With the help of a legal expert, we first observed the legal avenues used by the different parties, the types of evidence presented (scientific research, medical expertise, personal accounts, archives), the list of damages to be compensated (or those absent from the list), and the list of victims (and whether spouses, direct ancestors or descendants were included or not). We then analysed how these elements were received by the courts and measured the impact of case law – widely commented on in doctrinal literature as well as the media in general – on subsequent cases.

17Sociological research on legal action is often linked either to the work of professionals qualified to produce law, [39] or to the relationships that victims entertain with the law. [40] By using these different sources, we suggest jointly analysing the engagement of victims and the creation of a DES legal dispute that has transformed victims’ rights over time.

Individual constraints on legal action

20In fact, the success of some victims in the legal arena should not mask the limits of a legal system that places the burden of responsibility for identifying the harm suffered and for filing a claim on victims, consequently leaving invisible in the shadows a sizeable number of individuals who have suffered harm. [42] However, very few studies have looked at the factors that drive people to take legal action (or not) in personal injury cases. [43] In the case of DES, we have identified three crucial factors that explain why so few lawsuits have been brought to court.

21First of all, we must not overlook the general difficulties involved with taking legal action when one is not already familiar with the workings of the legal universe. [44] Nor should we ignore the limits of a model of legal protection in which the law offers victims effective tools to seek redress and compel offenders to conform to current social norms. These difficulties are compounded in medical cases, where significant asymmetry exists between the victim and the accused; this is even more so the case with DES, as the pharmaceutical companies have ample experience with the law, integrated legal divisions, and significant financial capacities that theoretically give them the best chances of winning in court. Interviews thus revealed that while legal action was indeed a tool for some victims, it was a difficult one to wield; its material and symbolic costs were a powerful disincentive, [45] as one organiser for Réseau DES explains:

22

“What we try to tell daughters is that you have to assess the situation. But even for those who have had cancer, I think that they need to evaluate what they’re hoping to get out of the process, because it’s a lengthy ordeal, it’s difficult. […] For those young women who had difficult pregnancies but who managed to ultimately have a child, we are more likely to say, ‘Think about the time, the money that you’re going to have to front, the time that you are going to have to spend on the case, are you ready to do all that?’”

23It is possible to draw a parallel here with American socio-legal studies [46] on the relationship between the law and the processes of social exclusion, especially with regard to the victims of discrimination. The gendered dimension of exclusion is particularly evident here, as DES victims are first, and primarily, women. These women are more willing to call themselves “survivors” than “victims” because they fear the psychological andmaterial cost of filing a complaint, as well as their poor likelihood of winning. They therefore bank on their ability to deal with adversity rather than on any potential compensation the system might deign to award them. [47]

24Secondly, and more specifically, many of the individuals who were exposed to DES gloss over the various health problems they have suffered, their severity weakened in light of the graver misfortunes that could potentially have happened (clear cell carcinoma, the death of a premature child, permanent infertility, etc.). Speaking about her second son, born full-term and in good health, while her first had been born very premature, Isabelle [48] describes a “normal” pregnancy, then adds: “normal, but bedridden all the same”. This mitigation of hardship is further reinforced when victims share medical experiences, thus realising the greater severity of damages suffered by others. Consequently, this same DES daughter describes her ectopic pregnancy, as a result of which she lost a fallopian tube, as follows:

25

“Ultimately, I was happy to have done it, because I told myself ‘I can do it!’ […] Compared to other women, it wasn’t catastrophic…”

26Caroline, who suffered a series of late-term miscarriages, as well as medically assisted fertility treatments for over fifteen difficult years, a divorce that she attributes directly to those problems, and finally a completely bedridden pregnancy, nonetheless says that she is “privileged”. Going against the current rhetoric criticising a “society of victims” always ready to litigate, our interviews show that many actors are perfectly capable of bearing the injustice. One organiser for Filles DES explains the situation:

27

“There are some women who say, ‘but I’m not enough of a victim’, so obviously they don’t feel that their case is representative enough.”

28The comparisons engendered by membership in various support and advocacy organisations, as well as the sharing of personal experiences, can in reality act as a disincentive to taking legal action.

29The history of the DES legal dispute also introduced a hierarchy of harm and created divisions among victims. The role of the first few cases was ambiguous in this sense: they established precedents and encouraged other women to come forward; but at the same time, however, the first complaints were also filed by women who had suffered very serious cancers – some of the women even died before the end of their trial. These first legal disputes therefore also acted as a disincentive by persuading some victims that the harm they had suffered was not severe enough to seek redress, thus preventing a snowball effect.

30Thirdly, the unique social and family history of DES undeniably contributed to this phenomenon. Calling oneself a victim entailed recognising that the harm had been caused by medication taken by one’s mother or grandmother. As a result, those who were exposed to DES in the womb are sometimes reluctant to announce it publicly, as one organiser for Filles DES explains:

31

“We have a hard time getting people to tell their story. It’s because DES daughters are afraid to testify as such. For some of them, […] they don’t want to make their mothers feel guilty. Even in terms of filing a complaint, they tell me that they don’t want to do it, because they don’t want to make their mother feel guilty.”

32This process has also been documented in studies on illness and disability: when a society does not recognise a public health problem, the victims of this problem become a nuisance and are ultimately forced to accept responsibility for their own misfortunes. [49] In our study, mothers frequently reported feeling guilty for having taken DES, even though they were prescribed the drug by their physicians. DES daughters expressed guilt at not having been able to give birth to a healthy child, even though many suffered from deformities over which they had no control. Some DES daughters even felt guilt about the children they did manage to have, once they discovered that the drug had third-generation adverse effects.

33Due to a lack of publicly assumed responsibility for the defective product, the trans-generational nature of the pathologies associated with DES contributed even further to the interfamily circulation of feelings of guilt. Despite the fact that this familial – and thus inherently collective – dimension might be seen as an incentive to taking legal action, it often instead serves to limit legal action, even when victims view such action positively. Patricia, the mother of two daughters who were exposed in utero and who have not filed any complaints, despite suffering from significant gynaecological and obstetric problems, explains her situation as follows:

34

“It’s true that every court case advances justice a little bit more. You do it for yourself, but not just for yourself. But the price that you have to pay – being suspected, being questioned by experts, etc., – I would never push my daughters to do that.”

35This last interview excerpt is emblematic of the quasi-unanimous support that exists for legal action, expressed even by those who do not seek legal recourse themselves. The limited number of cases tried in court does not therefore signify that the plaintiffs are a litigious minority looking for someone to blame, nor does it prove that a silent majority attributes the harm suffered to the vicissitudes of life. Prior studies have shown that many victims delegate legal action to figures that they support from a distance: [50] consequently, without having to litigate individually, they are collectively involved in the legal arena in a variety of different ways.

A collective legal battle

36The persons and organisations mobilised – whether they brought cases to court or not – are globally in agreement with regard to the dispute’s collective dimension, on two counts: individual cases acquire collective scope, and inherently collective cases maintain and extend the victims’ cause.

37First of all, the interviews demonstrate that although cases and legal proceedings are individual in nature, the decision to take legal action is seen as supporting a collective social cause. Much like what has already been documented in studies on mobilisation, individual legal action seeks to produce a collective entity that on the one hand re-classifies the individual and on the other, links him or her with a group, thus “vascularizing” the social fabric. [51] Here is what two women, exposed to DES in utero, had to say:

38

Véronique: “I’m not fighting for myself. I’m fighting for jurisprudence, so that women who don’t have all the ‘opportunities’ that I’ve had, so to speak, can benefit from it.”
Laurence: “It has to be done: for us, to close the chapter, whether it’s mine or hers, and to help other people, out of solidarity with the group.”

39It must be stipulated here that DES victims can only take legal recourse if they seek recognition and compensation for the harm incurred. The Oniam, or Office national d’indemnisation des accidents médicaux (National Office for the Compensation of Medical Accidents) only deals with medical accidents that occurred after September 2001, and to this day, there is no specific compensation fund set up for DES victims in France (unlike in the Netherlands, for instance). However, any form of individual involvement targets the already existing group of DES victims and has a knock-on effect when a case is tried successfully, thus expanding the group further. In fact, thanks to the complaints filed by certain victims, others have been able to identify the clinical problems they were suffering from and thus to “realise” that they were also “DES daughters”. [52] One of the most significant observations of our study was that many women suffering from health problems discovered the source of those problems following media coverage of the legal dispute. The first case law “victories” and their unprecedented media coverage thus provided a new framework for these women to consider their experiences and give them meaning by fighting against injustice, rather than merely looking for mutual support. [53] Out-of-court settlements with pharmaceutical laboratories are not uncommon, but they normally occur after a case has been brought to court. The publicising of the dispute was thus seen by the first plaintiffs as a means to break the silence and inertia of public authorities and the medical world. One of the first DES plaintiffs explains:

40

“It was a way of informing the public. I also knew about the experiences of Dutch women. It was because they worked to inform the public that other people came forth and testified. Same in the United States.” [54]

41It is possible here to identify certain processes described by Jean-François Laé on the capacity of victims to shift from the private to the public sphere and thus obtain social recognition, which in turn adds to the legitimacy of their claims. [55] Two possibilities open up for those victims who, until now, have stayed in the shadows: on the one hand, they can finally escape serial misdiagnosis, receiving proper medical care from trained specialists, while on the other, they can emerge from social invisibility and demand accountability for their misfortunes. The first court rulings thus encouraged further recourse to the law.

42In addition to these kinds of individual legal cases, a number of collective actions were envisioned and launched within DES-related organisations. These collective actions emerged from three different repertoires: information, peer support, and mass action.

43From the 1990s, raising awareness and disseminating information were the main activities of support organisations, especially in the medical field. This repertoire of action came to include legal action in the 2000s. Thanks to meetings organised between victims and law professionals, many women came to realise their shared condition, as Gaëlle explains:

44

“We met X, a lawyer, who explained the lay of the land a little bit. […] It was like something clicked for me that day, all of sudden I just felt like ‘we’re in this together’. […] We felt supported. There was a certain contact established. […] All of a sudden, UCB Pharma realised that they were no longer the only ‘big’ player, so to speak. It’s that that’s a phenomenal achievement.”

45Contrary to the widespread belief that victims are individualistic and focused on their own self-interest, even sometimes to the detriment of general public interest, [56] here we see that victims work to create groups and establish a common good. Organisations also hold demonstrations in solidarity and support during court hearings and encourage people to be present when the verdicts are handed down. Since victims lack any real ability to express themselves in civil proceedings (only their representative is allowed to speak), these forms of solidarity seek to counter the isolation felt by plaintiffs when dealing with judicial institutions. In addition to this dimension of solidarity, one organisation – Les Filles DES – has also developed a strategy to circumvent the isolated nature of legal proceedings, by concentrating them in time and space. The organisation’s president explains:

46

“All of our case files are in Nanterre, so even if it’s not a collective case, it makes it feel like one. In 2009, we asked everyone to try to file a suit, so that all the complaints would be lodged on the same day.”

47This tactic of grouping cases together had a significant impact on legal proceedings, as it forced the courts to deal with different cases at the same time and to present numerous rulings on the same day, which thus attracted the media’s attention and magnified the group’s presence in the public eye, as described above. [57] As in other cases, legal action made an affected group suddenly visible by publicising a social issue. [58] However, as a collective action strategy – unlike the choice to strike or protest – the choice to seek legal remedies should not be seen as an easy one: in reality, in addition to any complaint presented in court, legal action entails a lengthy series of intermediate operations and limits on which legal avenues to pursue.

Civil courts as the preferred choice

49The search for accountability could have involved any one of the three major branches of the law: administrative, criminal or civil. From the perspective of positive law, choosing administrative law would mean looking for responsible parties among the public authorities, for example the civil servants working in pharmacovigilance and post-marketing surveillance, or the political personnel responsible for approving the drug. Choosing civil law, on the other hand, would a priori entail interpreting cases in terms of accidents requiring individual reparations, in the form of compensation for the harm suffered from the liable parties, be they legal or natural persons. Finally, pursuing a case under criminal law would entail identifying a serious legal transgression for which the guilty party or parties must be punished. Criminal law has extensive powers of inquiry and is better suited to demonstrate the serial and collective nature of catastrophes. However, as legal sociology has clearly shown the myriad ways that trials are exploited, as well as the flexibility of legal mechanisms when dealing with demands for compensation, it is therefore necessary to thoroughly contextualise the procedural choices made in this situation.

50In the case of DES, recourse to administrative law was immediately eliminated as an option. The state’s responsibility and its negligence in terms of pharmacovigilance could have been examined in court, especially for victims exposed after the warning issued in 1971 and the contraindication issued in the United States. And yet no complaint seems to have been brought before an administrative court. [59] Some victims have explained that although they believed the authorities were responsible, given the existing configuration of administrative law and the legal tools available, pursuing an administrative lawsuit would have been a lost cause.

51Hhorages was the only group to consider criminal responsibility as a possibility. The organisation and ten of its members presented themselves as parties civiles to criminal proceedings in 2006, leading to a new formal investigation by the public health centre of the Tribunal de grande instance de Paris (the High Court of Paris). For Hhorages, the main advantage of a criminal suit was that it provided broader powers of investigation, allowing for the production of expertise that would identify the different responsible parties. Instead of a large number of complaints, it was therefore essential for the organisation to present a handful of “good cases” on the psychiatric effects of DES in order to help the judge conduct the investigation successfully. It was immediately assumed that the inquiry period would be a very lengthy one, so the organisation focused on obtaining new scientific knowledge regarding exposure to hormones that would convince the judge, as well as public health decision-makers. The organisation thus explicitly developed a strategy of “winning through losing”, with the inquiry and trial process ultimately designed to further the cause outside of the courtroom. [60]

52At the same time, however, victims have overwhelmingly sought to assign civil liability since the very first cases filed. The choice to engage in civil proceedings was based on a strategic evaluation undertaken by victims and their lawyers. After the 2000 law on involuntary offences was passed in France, it became evident that the chances of bringing a criminal case to court were almost non-existent, [61] even though over the course of the previous decade, criminal courts had been used to examine responsibility in a number of major public health scandals. [62] The first rulings produced in civil courts marked a number of victories for DES victims and were widely discussed in the media. This visibility became even greater when the rulings were confirmed by various appellate courts and the Court of Cassation. Publicity prompted a new series of lawsuits: after each victory, organisations and lawyers would receive numerous requests for information and support for future legal actions. [63] This move towards greater collectivisation was so significant that in 2012, Hhorages and its lawyer expressed their wish to couple their criminal proceedings with civil suits, a choice which had been encouraged from the beginning by Réseau DES and Les Filles DES.

53Although a collective cause was gradually established as legal victories were discussed in the public sphere, the experience of going through a civil suit was nonetheless highly unstructured and isolating for each of the plaintiffs involved. Civil proceedings could ultimately be as long as criminal ones, and they were less predictable or visible. In fact, experts were almost always challenged with regard to their impartiality and qualifications, sometimes leading to rulings that went all the way to the Court of Cassation before the facts of a case were even dealt with in a court of first instance. Victims had a profoundly disjointed experience of legal time: for months, cases would stand still, hearings would be postponed, expertise delayed. Legal council was received sporadically, outside of a trial’s activation periods. It was also an expensive process, in particular because victims had to pay the experts. While victims are allowed to ask the opposing party for provisions to cover the costs involved, this requires new legal action, which further delays a case, especially as the demand is often challenged.

54Each victim is therefore stuck in a tunnel, the light at the end of which s/he cannot see, thus preventing any collective experience from emerging out of the process of criminal inquiry. Moreover, victims do not get to experience a wide-lens view of the trial and see all the relevant actors involved. [64] On the contrary, they sit through hearings where they are never allowed to speak, and are then, after a delay, informed of decisions via their lawyers, without any courtroom formality. As a result, victims are sometimes advised to not attend the court sessions, as Évelyne recounts:

55

“I never sat in on the ‘minor hearings’, so to speak, where we were all going to be packed in together, because my lawyer said ‘there’s no point, don’t trouble yourself, you’d be there for five minutes at the most’”.

56The disconnect between the collective cause progressively created by the build-up of cases and the isolation experienced by individual civil parties makes the role of support organisations and cause lawyers essential, as they provide victims with some degree of legal awareness. This awareness notably grew out of victims’ tendency to attribute responsibility for their predicament to pharmaceutical laboratories.

A consensus against the laboratories

57Victims have exclusively directed their complaints against pharmaceutical laboratories, which has allowed for a DES legal dispute to develop on the basis of defective product liability. This apparent unanimity stemmed from a number of different reasons, however. Some victims acted against the pharmaceutical companies for strategic legal reasons, while remaining convinced that the laboratories were not the only responsible parties. These plaintiffs circumscribed responsibility in order to have a better chance of winning their case, in particular because they knew that the companies were financially solvent (unlike some doctors, for instance). These victims did not exclude other potentially responsible parties, but they believed that the justice system was not equipped to deal with the latter appropriately. One advocacy organiser specialising in litigation issues expressed the reservations felt by many victims:

58

“Three things. From a tactical standpoint, information comes [from doctors], so generally speaking, it’s better to take care of them… Second, to me it seems rather complicated and anachronistic to go and criticise a doctor who practised in the 1960s for not having respected an indication that appeared during the 1990s and 2000s. The point is […] that we’d have to prove that, at the time, both collectively and individually, Doctor So-and-So in the middle of nowhere was aware of the fact that DES was harmful to one’s health.”

59And yet, prescriptions issued after 1971, and especially those issued after the contra-indication against use of DES in pregnant women was published in France in 1977, could likewise motivate lawsuits against the prescribing doctors. Here as well we can see patients’ indulgence for their doctors and their professional limitations, including a certain degree of ignorance, which is not seen as inherently culpable even when it is considerable. [65] The gynaecologists and general practitioners who prescribed the drug were duped just like the mothers who were their patients. As we heard over and over in the context of our study: “He prescribed it in good faith”. [66] Throughout our corpus, the belief that public health institutions and the medical profession are inherently good is repeated time and time again, while blame is placed on the pharmaceutical industry’s greed. Marie states this clearly:

60

“As victims, we’re not against the medical body, on the contrary. We’re against the pharmaceutical labs.”

61While the occasional refusal of doctors and pharmacists to provide the original scripts or to release patient files – necessary pieces of evidence – provoked moral outrage, these actions did not lead to lawsuits against medical professionals. Some DES daughters have argued that instead of going after the prescribing physicians, lawsuits should target those who wilfully maintained the status quo of ignorance and silence, thus depriving victims of adequate medical care and at times sending them on a diagnostic wild goose chase with adverse effects. [67]

62Most of the victims surveyed believed that responsibility lay solely with the pharmaceutical companies and that civil proceedings provided the best tools for the imposition of liability. UCB Pharma and Novartis were thus reduced to purely economic and profit-driven entities, devoid of any moral standards or concerns for public health. Sophie explains:

63

“The labs made tons of money even though they were entirely aware of the molecule’s effects.”

64Similarly, Anne declares:

65

“It’s David and Goliath, the pharmaceutical companies are the ones who stuffed their pockets with cash. […] For them, it was a tiny group of people who might be affected, and who wouldn’t fight against UCB. For them, it was a question of ‘what’s the importance of 150,000 people anyways?’”

66Much like in the case of farmers who became pesticide victims, [68] the conviction that responsibility lay solely with the companies involved was strengthened over time, in particular through victims’ confrontation with defence attorneys, who systematically challenged the pieces of evidence presented by the plaintiffs and downplayed their misfortunes. [69]

67This conviction was also reinforced by the judges’ rulings, which established an overwhelming amount of case law against pharmaceutical laboratories on the basis of defective product liability. Judges first ruled that the children of women having taken DES could be considered as a party to the contract between a laboratory and its client. [70] They then turned to the question of knowledge regarding the drugs’ deleterious effects; to this end, judges asked for a general adversarial appraisal from the beginning. This was conducted in 1994 by a multidisciplinary panel. Responding to the judges’ questions concerning the studies “that UCB would reasonably have been expected to know […] and which would have justified different behaviour than that illustrated in the company’s continuing distribution of DES”, [71] they compiled and analysed the literature on DES and its effects. In their conclusions, the appraisers established two separate timelines. After Dr Herbst’s publication on clear-cell adenocarcinoma (CCA) in 1971 and the contra-indication of DES in the United States, the appraisers believed that UCB Pharma should “have been aware of this data and [should not] have maintained the distribution of DES for use in pregnant women”. Before that time, however, the existing research was described as contradictory, which could have explained why UCB Pharma maintained “the distribution of DES for its use during pregnancy”. [72] Nonetheless, while judges in courts of both first and second instance relied on the data provided in this report, they ultimately reached a different conclusion, ruling that there was “a duty of vigilance” according to which the company had “committed a series of offences by not monitoring the effectiveness of the litigious product, especially given the warnings contained in the medico-scientific research, specifically in 1939 and 1962-63”. [73]

68After the Court of Cassation upheld this ruling in 2006, the duty of vigilance required in the case of clear-cell adenocarcinoma established a precedent for all DES victims, regardless of their birth year, even though the laboratories would continue to challenge the legal basis for other afflictions. By defining a very broad scope of responsibility, judges made this legal channel even more appealing for victims, making a secondary search for liability among prescribing physicians or public authorities superfluous. In addition, this ruling helped to unify victims by creating a shared sense of legitimacy behind their demands for compensation.

The weight of expertise

70From the very first case brought to trial, the question of medical causality has been raised, always in the context of the general appraisal conducted in 1994, where the difference between legal evidence and scientific evidence was clearly defined by the experts:

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“There is a clear discrepancy between the term ‘undisputed cause’ and the usual biological and medical reality. It is incredibly rare for us to be able to answer the question with an absolute ‘yes’ or ‘no’”.

72One after another, judges have broken with this concept of scientific uncertainty, asserting that there was a “relevant probability of the causal role of Distilbène^®” in the appearance of clear-cell adenocarcinoma. Moreover, judges have seen T-shaped uteri as a “signature pathology”: identifying this malformation and the damages linked to it as establishing a form of causality that could systematically be attributed to DES. At the same time, however, for victims suffering from other pathologies, individual expert medical opinions are always decisive: in fact, the panel of experts, generally composed of three individuals, is tasked with determining the reality of victims’ afflictions, as well as the causal link, if any, with DES. Expert reports are an important “strategic resource” [74] for the different parties involved. They involve lengthy clashes between victims and pharmaceutical companies regarding how to choose experts, and who should pay them, as well as the quality of the reports and the need to conduct further inquiries. [75] Héloïse says:

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“These expert assessments, they’re terrible because you have to relive everything you went through and believe me, they know how to make you experience the worst all over again.”

74An analysis of dozens of expert reports illustrates the variety of rulings issued, due to the multifactorial nature of the different afflictions reported by DES daughters. [76] Nonetheless, here again judges have reduced these differences to the process of establishing a certain and direct causal link, in particular by discarding alternative causalities and refusing to accept a probabilistic model. Although judges are not tied to experts’ conclusions, they must not change the nature of expert reports: [77] they therefore select elements of the report to either confirm or reject a causal link for each and every affliction. This Boolean model of legal causality once again serves to unify victims, by treating different individual pathologies and uncertain and fragmented scientific knowledge in a similar fashion.

75Expert assessments also help to certify that victims were truly exposed to the drug. In fact, even if a causal link with the damages have been established, it is still necessary to identify which laboratory manufactured the drug prescribed in order to force the company to provide compensation. Although the first victims to come forward were in possession of a prescription proving they had been exposed to DES, in many later cases, victims did not have this kind of evidence. Several decades after the original prescription, many victims are unable to produce any documentation identifying a specific laboratory.

76Court of Cassation judges once again transformed the law in 2009, when they ruled that once the causal link between a pathology and exposure to DES had been established, “it was the responsibility of each laboratory to prove that its product was not the cause of the pathology”. [78] With this ruling, the judges in fact reversed the burden of proof in the victims’ favour. In the absence of documentation identifying which of the companies manufactured the drug that gave rise to the harm in question, liability for said harm fell in full to each company. Consequently, proof of exposure was thus partially based on the existence of signature pathologies and, when these were absent, on solid and consistent evidence (medical files, testimonies).

77While expert appraisals are always a lengthy and arduous process for victims, the evolution of case law means that the legal framework for accepting their complaints has expanded.

78Pharmaceutical companies have come to constitute a unified party, which strengthens focus on their liability. It therefore falls to each individual company to provide evidence that it is not the liable party. In a similar fashion, judges have further helped to unify victims, regardless of the laboratory responsible for their damages and, more importantly, regardless of the documents proving exposure that they possessed.

Standardising compensation

79After recognising the plaintiff as a DES victim, the judge proceeds to recognise the harm suffered by the plaintiff and the relatives who also suffered due to his or her exposure; the latter are known as “indirect victims”. Each plaintiff thus represents a micro-group of potential victims, the judge being free to include or exclude them on the list of individuals to be compensated. Since, as in a number of other medical liability suits, the damages caused by DES usually involve sexual and reproductive functions, spouses are automatically recognised as indirect victims. The children and parents of the original victim are likewise often included. [79] However, in the case of DES specifically, judges also recognised the suffering of the women who had consumed the drug. They were simultaneously seen as direct and indirect victims, given that “they endured massive guilt at having taken during pregnancy a drug that was supposed to help them give birth, but which 30 years later was revealed to cause serious morphological abnormalities in their offspring that would hinder the latter’s ability to conceive.” [80] Following a similar kind of logic, since 2010 the courts have designated DES grandchildren as the victims of “cascading” harm. In these kinds of cases, a victim’s grandmother ingested DES, and in turn his/her mother suffered from various gynaecological afflictions that directly caused the victim’s highly premature birth (and in some cases, serious disabilities). In this new framework, new indirect victims can be included, such as brothers and sisters. All of these victims may see different kinds of harm recognised, following the long tradition of normalising compensation for bodily harm, as has occurred for victims of workplace accidents, motor vehicle accidents and terrorist attacks, as well as for “ordinary” civil victims. [81] The amount of compensation is left entirely up to individual judges, but since the middle of the 2000s, the latter have begun to rely on another standardisation mechanism.

80In fact, in the context of a broader move to “harmonise” legal instruments, [82] the judges involved in DES cases have systematically used the “Dintilhac” nomenclature, a non-binding legal instrument composed of 27 distinct classifications developed in 2005. [83] Lawyers established this system of codification following their exchanges with victims. It is then up to the individual judge to determine which classifications merit compensation. For example, considering the case of Nadine, a DES daughter who managed to have children thanks to a correct diagnosis and appropriate medical care (sick leave during all her pregnancies, cervical stitching) but still suffered from a number of afflictions (a T-shaped uterus, subfertility, premature delivery), the judge ruled:

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“Sets out the damages as follows and orders the company UCB PHARMA to pay:
To [Nadine]
Special damages subject to payment by a third party:
– Current medical expenses: None
– Miscellaneous fees: 3,197.88 euros
– Occupational impact: 5,000.00 euros
– Permanent disability: 2,500.00 euros
General damages:
– Temporary disability: 13,875.00 euros
– Pain and suffering: 15,000.00 euros
– Permanent physical disfigurement: Denied
– Sexual impairment: 800.00 euros
– Emotional distress: Denied
– Anxiety: 1,000.00 euros
To [her husband]
– Non-material damages: 8,000.00 euros
– Dismissal of his claim for loss of consortium
– Dismissal also of his claim for sexual and reproductive impairment
To [her mother]
– Non-material damages: 10,500.00 euros” [84]

82In addition to damages of a financial nature, which change on a case-by-case basis, case law has also elaborated a typology of redressable personal injuries. Clear-cell adenocarcinoma victims have almost all filed claims for pain and suffering, lowered quality of life, disfigurement (often due to the scars lefts by numerous operations) and sexual impairment. Victims of infertility have almost all filed claims for pain and suffering, as well as sexual impairment (or reproductive impairment, depending on when the lawsuit was filed). In the gravest cases, victims were compensated for lowered quality of life and even emotional distress, [85] with amounts reaching several tens of thousands of euros. As for indirect victims, they were systematically compensated for non-material (moral) damages, with the amount of compensation generally hovering around several thousand euros.

83In the earliest cases, pharmaceutical companies were forced to pay significant total sums, with social welfare agencies potentially recovering a portion of the money. As harm is divided up into many different classifications, each type of harm may receive minimal compensation. As a result, compensation amounts are often criticised, either because the amounts seem insufficient in light of the suffering endured, or because they are incommensurate with the loss suffered, for example emotional distress with regard to one’s loss of opportunity to build a family. Véronique explains:

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“I lost four babies […], at the beginning I didn’t want any money. I told my lawyer: that money would be disgusting to me.”

85As compensation threatens to lose its meaning, judges use the existing classifications as a tool for collective equity. [86] Even though they lack a unified binding framework, like the compensation funds used by public authorities in other public health affairs, these civil proceedings ultimately produced a relatively standardised set of reparations for small groups of victims. Nonetheless, judges always base their reasoning on the unique characteristics of each case. [87]

86Finally, in 2007 and 2008, the Versailles court of appeals recognised specific exposure damages for five women whose physical impairments, though medically documented, were not attributable to DES according to the judge. The mere fact of knowing that one is a “DES daughter” has become a source of emotional distress, especially in cases of infertility. Much like when the Court of Cassation recognised a specific principle of exposure for asbestos victims in May 2010, these rulings legitimised a sui generis victim status.