STRUCTURE DU FACTEUR CAPITAL

“Medicine is no longer exclusively concerned with the preservation of life, but with remedying the malfunctions of the human body. On this analysis, an inability to have children is a malfunction and should be considered exactly the same way as any other.”

(Warnock Committee Report, 1984: 9)

According to the British Medical Association (BMA), one in ten couples are said to be infertile, and one in seven will have difficulties in conceiving (BMA, 2012). Fertility treatment has resulted in 122,043 babies born following IVF in the UK between 1992 and 2006, with IVF births accounting today “for just over 1.5 per cent of all babies born in the UK each year” (BMA, 2012:

311). In 2011, 2 per cent of all babies born in the UK were conceived through IVF (HFEA, 2014). The age of women able to access treatment from the National Health Service (NHS) has increased to 42 (HFEA, 2013), and there has also been an increase in same sex couples receiving treatment (HFEA, 2014).

Despite these recent social, cultural and legal changes, fertility

treatment still gives rise to important social and moral issues related to access to treatment, the beginning of personhood, and in general to public expectations of the outcomes of practices such as IVF (BMA, 2012; Harris and Holm, 1998).

Before engaging further with fertility treatment in the UK, it is important to define the concept of infertility and its current definitions. The NHS defines infertility as “when a couple cannot get pregnant (conceive), despite having regular unprotected sex” (NHS, 2014). At the international level, the definition of the World Health Organization (WHO) considers infertility “a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse” (WHO, 2014). Legislation on Assistive Reproductive Technologies (ARTs) has seen a slow development in Europe, mostly due to the different religious, political and ethical viewpoints from country to country.

Nonetheless, the areas where most disagreement is to be found are “eligibility criteria for access to assisted reproduction, gamete and embryo donation, and in vitro embryo research”

(Pattinson, 2003: 7).

In the United Kingdom, the Warnock Committee first created a report on Human Fertilisation and Embryology in 1984, which constituted the basis for the Human Fertilisation and Embryology Act (1990). The Act, in turn, established the Human Fertilisation and Embryology Authority (HFEA), which is the main national regulator in the field, operating at an arm’s distance with the Department of Health. The Act also establishes the activities needing licensing in order to be legally performed in clinics and hospitals – such as “the creation and use of human embryos in vitro for both treatment and research;

the storage of gametes and embryos; the use of donated

sperm, eggs or embryos” (BMA, 2012). As a result, the HFEA liaises with every NHS and private clinic offering licensed fertility treatment. Both documents are further discussed in sections 3.4 and 3.5.

The increase in the number of people obtaining fertility treatment gives rise to reflections about products and services (fertility treatments, drugs, and surgical procedures) that have become more and more normalised as social norms around family and gender roles change and develop. As noted by Franklin, “[c]onception in vitro is now a normal fact of life”

(2013: 1): if, only a few decades ago, giving birth following fertility treatment was conceived as a ‘miracle’ of science, today it is conceived as normal practice, something one would naturally seek when pregnancy does not happen (Moore, 1999).

This normalisation has to do with both socio-cultural changes in civil, legal and medical rights (for example, same-sex couples, single women, or ‘older’ women obtaining treatment and being able to be recognised legally and socially as parents), but also with the various organisations revolving around fertility products and services, be they medical, scientific, profit-driven, governmental or societal. These interactions are important in relation to field legitimacy, in that the normalisation of an ethically sensitive field such as fertility treatment is linked to the same field’s social acceptance: the more its practices are normalised, the more they are accepted and can therefore be carried out within the field.

The first clinic exclusively dedicated to IVF was opened in 1980 by Steptoe and Edwards, the same pioneers who only two years earlier achieved the very first IVF live birth (Bourn Hall, 2016; see 3.3). Thirty years later, in 2010 the UK had 71 fertility clinics (HFEA, 2011). In an article on the history and

development of IVF, Brian notes that at the time when fertility clinics were newly opened

“IVF was far more demanding for patients than it is today. Women were required to spend two to three weeks as inpatients, staying in Portakabins in the grounds of their clinic … Today, IVF is a far more streamlined process. Women are treated as day patients, and there are no three-hourly urine collections, no hours of crouching after egg collection.

Although moral and ethical questions still surround new advances, for the most part it has become an everyday treatment.” (Brian, 2013)

The process has in time become less of a commitment, less time- and energy-consuming, and can thus be viewed as more of a ‘normal’ practice. In the last forty years, fertility treatment has indeed become normalised and standardised in line with industrial and medical developments, and the rise of fertility-related businesses can attest to this.

Particularly in light of the dependence of fertility treatment upon scientific and technological developments, the field becomes relevant when considering the types of organisations involved with reproductive medicine. Fertility treatment is a field primarily comprised of businesses which employ scientific developments in their practices, either directly (private clinics, pharmaceutical companies) or indirectly (as for instance in the case of counsellors supporting patients undergoing treatment).

Reproductive medicine is directly and indirectly practiced through the organisations within the field of fertility treatment;

in turn, the field would not exist without scientific and technological advancements. Anne Balsamo notes that

“the technological formation of new reproduction technologies reproduces the process of biological reproduction as a commodity that can be institutionally regulated just as are other commodities.

The emergence of a reproductive medical industry attests to the fact that the business of life has never been better.” (Balsamo, 1999: 94)

Analysing fertility treatment as a field, then, is appropriate given its organising and reproducing features within society and culture. As I mentioned in section 2.2.3, a field is a construct employed to examine “social systems and processes” (Scott, 2008: 223): within a field, organisations “involve themselves with one another in an effort to develop collective understandings regarding matters that are consequential for organizational and field-level activities” (Wooten and Hoffman, 2008: 138). In the case of fertility treatment, the process of developing collective understandings of infertility commonly takes place within the marketplace: in fact, acknowledging infertile women and men as an expanding market helps understand how fertility has developed to be conceived a

“health problem of concern to all” (Moore, 1999: 81). In this regard, Franklin stresses how IVF derived “from the narratives and hopes of couples seeking children – indeed from a technology that quickly became a new norm of family life”

(Franklin, 2013: 31-32). Organisations’ influence at the field level is here clearly intertwined with the broader social context where discussions on fertility take place. Moore further notes how “bizarre” it is to see fertility treatment advertisements in

“mass-market publications” (Moore, 1999: 83), making it not just a normalised service, but a product seemingly easily accessible and obtainable by anyone trying to conceive. Such a

process of normalisation and commodification often obscures the mutually reinforcing relation between medicine and business, as well as the polarised positions of ART customers and health professionals. In fact, while both doctors and infertile people aim at the birth of a child, “their reasons for wanting this child clearly differ” (Pfeffer, 1987: 84), contrary to the common assumption of ‘working together’ to have a baby.

The fact that the field of fertility treatment largely operates within a market becomes evident at the FCE level: most of the organisations exhibiting at the Fertility Show are businesses (see chapter 4), making them important actors when analysing field legitimacy.

Organising assisted reproduction can thus be linked to the

“rise of health consumerism” (Bradby, 2012: 123) where different societal actors are involved in the market of health – from governmental investments “in individualizing responsibility for health and illness” (Bradby, 2012: 123), to pharmaceutical companies marketing their products to GPs and individuals. It is important to stress the consumeristic aspect of fertility treatment in that at the Fertility Show the profit-oriented nature of the vast majority of the exhibiting organisations is evident and rather stark; the legitimacy of the business side of the field of fertility treatment is related to broader social trends that have seen an increase in privatised healthcare and medical services. Indeed, “IVF is normal because it already belongs to techniques of normalization – including, among others, those of marriage, kinship, gender, scientific progress…consumer culture, and medical technology”

(Franklin, 2013: 6). Fertility treatment, as a field mostly comprised of profit-oriented organisations, partly owes its

legitimacy to relatively recent broader social trends toward the privatisation of healthcare.

Despite the increased discussions and publications on fertility in recent years (Cahn, 2009; Henig, 2004; Ikemoto, 2009; Goodwin, 2010), fertility treatment started to become of public interest only in the late 1970s. Specifically, what sparked the creation of various fertility-related organisations was a scientific breakthrough: the birth of the first IVF baby on 25^th July 1978. The next sections in this chapter are dedicated to presenting how the field of fertility treatment emerged, developed, and became legitimate through scientific advancements, regulations, and an increased market presence.

3.3. 25^th July 1978: A New Kind of Baby

On the 25^th July 1978, the first IVF baby was born at the Royal Oldham Hospital in Lancashire. The birth of Louise Joy Brown was the result of years of scientific experimentation and represented a landmark in reproductive medicine as well as for science more generally, and was achieved thanks to the collaborative efforts of Robert Edwards and Patrick Steptoe. Dr.

Robert Edwards, winner of the Nobel Prize in Physiology and Medicine for his successful developments in IVF, had an educational background in animal reproduction and genetics (Franklin, 2013) before dedicating his research endeavours to physiology and experimental embryology in the 1960s. In 1966 he began his collaboration with Dr. Patrick Steptoe, a gynaecologist at Oldham General Hospital who pioneered “the development and use of the laparoscope in gynaecological surgery” (Johnson, 2011: 254). Their work was part of a stream of research into reproductive medicine linked to the names of Gregory Pincus and Min Chueh Chang.

Gregory Pincus (1903-1967) was an American biologist interested in the study of hormones and who famously contributed to the development of the oral contraceptive pill together with his colleague Min Chueh Chang. Pincus experimented and successfully achieved fertilisation in-vitro with rabbits (1930), whereas Chang successful achieved fertilisation in mammals such as rats, mice and hamsters (Franklin, 2013). Both scientists had a strong impact on reproductive science, and their work largely contributed to the research and achievements later carried out by Edwards and Steptoe. Pincus had in fact successfully cultured mice eggs and later in-vivo maturation of human eggs (Franklin 2013: 144).

Edwards was motivated to carry on Pincus’ work. In the 1960s he gained access to Edgware General Hospital in North London, where he was able to access “a reliable supply of human tissue from which to retrieve and mature eggs” (Johnson, 2011: 250).

It is here that in 1969 and 1970 Edwards obtained his first significant achievements, by collecting “in-vivo matured eggs from follicles after mild hormonal stimulation” and later by

“achieving regular fertilization of these eggs and their early development through cleavage to the blastocyst”! (Johnson, 2011: 258).

Despite the scientists’ professional and scientific achievements, the controversial status of reproductive medicine at the time (Johnson and Elder, 2015; Franklin, 2013) brought the UK Medical Research Council to reject the scientists’

grant application in 1971 (Johnson, 2011). The rejection was mostly related to ethical concerns related to “the need for more animal and primate research” and concerns about the use of women for “purely experimental purposes”!(Johnson and Elder, 2015: 42). At the time, Edwards particularly received a lot of

professional attacks due to the general lack of concern with regards to the ethics of the embryo on the scientific and medical community side (Johnson, 2011). However, strong in his will to change and influence public attitudes toward fertility treatment, Edwards publicly engaged with the media and openly discussed his work and research. The public and the medical establishment were nonetheless generally unwilling to take these engagements and discussions seriously. They only became of true interest to the Medical Research Council (MRC), the BMA, the Royal Society and the government after the birth of Louise Brown in 1978 (Johnson, 2011).

The ethics behind the first successful IVF birth story are of particular interest to understand how the field of fertility treatment emerged and developed. Elder and Johnson recently published a series of papers reporting the medical, scientific and ethical context at Oldham from 1969 to 1978 based on original documents recorded at the time (see Elder and Johnson, 2015a;

2015b; 2015c; Johnson and Elder, 2015). The authors note that the BMA was concerned about the ethics of embryo research at least until 1970, but became more enthusiastic later in 1972 after evidence provided by Steptoe and Edwards in relation to information for and treatment of patients before the procedure, risks in implantation, outcomes and methods (Johnson and Elder, 2015). Indeed, ethical concerns and practice came to the fore more broadly only in the early 1970s. Within the establishment, the use of research ethics protocols was rare until 1967 when the approval of a committees of doctors was suggested prior to all clinical investigations. The implementation of ethics committees was however notably slow (Johnson and Elder, 2015). Another reason for the “emergence of bioethics” during these years came from concerns with the

protection of the medical profession in light of the increased public and governmental preoccupation with medical ethics.

Such concerns came from the government, but also from patients (who later became consumers), religious groups, and feminists (Johnson and Elder, 2105: 42).

If we consider the 1970s as the early days of the field’s emergence, we can notice how the reasons underlying the increasing public interest in the field were related to the medical profession’s interests as well as civil society concerns which, as I will discuss later in this chapter, were mostly related to issues of women’s agency and the status of the human embryo.

Edwards and Steptoe’s approach to research and ethics was nonetheless very open, overall. The two published their results widely and in detail, and they engaged in public discussions (Johnson and Elder, 2015). Johnson and Elder further stress how, ethics-wise, the atmosphere at the Oldham clinic was permissive, most likely due to Steptoe’s influence and charisma (Johnson and Elder, 2015: 42).

With respect to this last point, the authors mention important ethical issues with regards to the vulnerability of patients, remarking how women being treated at the clinic were often described as ‘desperate’, and how their condition and treatments were kept secret even from the women’s families.

The authors further question whether the women involved in treatment consented to it “validly under the common law requirement of capacity, information as to nature and purpose, and voluntariness” (Johnson and Elder, 2015: 42) or if it was instead a consent given on a vulnerability basis.

The ethical concerns that arose with the birth of Louise Brown were clearly not confined to the medical and scientific

professions. Much public anxiety was indeed present throughout society. The first IVF birth was described by biochemist Professor Leon Kass, who later became chairman of the US President’s Council on Bioethics from 2002 to 2005, as

“the blind assertion of will against our bodily nature, in contradiction of the meaning of human generation it seeks to control” which “can only lead to self-degradation and dehumanisation” (Frame, 2008: 132). The most vocal organisation against IVF was possibly the Catholic Church, which was strongly opposed to experimentation on human embryos, seen as human beings entitled to the same treatment as adults.

After the birth of Louise Brown, the early 1980s were a moment of strong reflections with regards to IVF, particularly with regards to the upcoming document submissions to the Warnock Committee for discussion in the same years. Seen as

“intrinsically immoral” IVF was seen as a practice which was disrespectful to human life and where “newly conceived human beings are regarded as expendable for these purposes”

(Iglesias, 1984). Other concerns included “the relationship of the procedure to abortion and the danger that widespread use of in vitro fertilisation might lead to more dangerous forms of genetic manipulation” (The Tablet, 14^th April 1979), as well as questions about the sanctity of marriage and of the family as an institution. Outside of the Catholic Church, other contemporaries at the time defined IVF as “an ethical slippery slope” which might “bring society to apocalyptic human reproductive processes” (Frame, 2008: 132). Indeed, it has been reported how Louise Brown’s family received threats and hate mail after their daughter’s birth (Ward, 2015).

3.4. An Anxious Matter: The 1984 Warnock Committee