Assisted Reproductive Technologies in India: Implications for Women
The growth and promotion of assisted reproductive technologies raise a number of issues with regard to their implications for women, primarily in terms of health and social pressures on them to conceive. Very often, women are not told the side-effects of the “treatment” and the social pressures operating upon them force repeated “trial and error”. Much public awareness and debate are required on this important issue.
SAMA TEAM
T
The first IVF baby in India may have been born just a few months after the birth in 1978 of Louise Brown, the world’s first IVF baby, in the UK. Dr Subhas Mukherjee from Kolkata claimed credit for the second IVF baby in the world, Durga. However, his claim was considered to be inadequately documented and rejected.1 India’s first “scientifically documented” IVF baby was born on August 6, 1986. Harsha Chawla was born following the collaborative research efforts of the Indian Council of Medical Research’s (ICMR) Institute for Research in Reproduction and the King Edward Memorial Hospital, a municipal hospital in Mumbai [ICMR 2005].
Research and promotion of ARTs was undertaken in India as a government initiative, but it soon fed into the private health sector and has since then flourished as a private enterprise. The public sector eventually discontinued the programme, but the ART industry in India has continued to expand steadily ever since its introduction. The potential market is estimated conservatively at Rs 25,000 crore [ibid]. Clinics offering ART procedures have also mushroomed all over the country, from Mumbai to Guwahati. According to an ICMR publication published in 2005, “There are an estimated 250 IVF clinics in India today” [ibid]. There will be many more such clinics in 2007.
Another indication of the growth of ARTs is the rise in membership of the Indian Society for Assisted Reproduction, which was set up in 1997. The web site of the society lists more than 600 members in 2007.2 In addition, there are “infertility centres” in smaller towns and rural areas that work in coordination with referral ART centres located in tertiary healthcare institutes in cities.
From 2004 to 2006, Sama3 conducted a qualitative study on the medical, social and ethical implications of ARTs on the lives of women in the Indian context. The study was conducted in three cities in India, Delhi, Mumbai and Hyderabad. The research was guided by the understanding that in a patriarchal society, the proliferation of ARTs can impose double burdens: the burden of a social system that restricts women’s role to that of child bearing, and the burden created by what might be described as the medicalisation of everyday life.
This paper summarises some of the key findings of the study in terms of the responses of the providers of and those of women undergoing ART procedures. The paper is organised into six sections. In Section I, we briefly present the study methodology. Section II discusses the social pressure to give birth to a child. Section III discusses women’s expectations of the child that they desire. Section IV discusses the nature of information and counselling (covering (a) informed consent, (b) information regarding egg retrieval, and (c) implantation and preservation; and information on the success rates of these techniques). Section V covers the side effects and complications of the drugs and procedures. Section VI focuses on the experiences and perceptions of this process as articulated by the women and describes (a) the impact on their lives and (b) why they feel adoption is not an option.
I Methodology
The study was conducted in Delhi, Mumbai and Hyderabad. Twenty-three providers and 25 women who were either going through IUI and IVF or had been advised these procedures were interviewed using an open-ended interview technique. All the women were married. Supplementary interviews were conducted with ICMR officials and feminists and health activists from various social movements. A review was done of ICMR guidelines and existing literature on ARTs in various publications. Publicity materials of various clinics were also analysed.
Limitations
A few limitations were encountered during the course of the study. First, as the providers were selected from a list of registered ART clinics, the study does not include information on unregistered clinics. Second, although prior appointments were sought with providers, interviews were often interrupted. Third, it was difficult to hold interviews with women undergoing ART. Because of the stigma attached to infertility, such procedures are often undertaken in secrecy. Further, most women were interviewed in doctors’ waiting rooms, an environment in which space and privacy were sometimes compromised. The presence of
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family members in some interviews also affected the free interaction between researchers and the women being interviewed.
II The Social Pressure to Give Birth to a Child
Providers’ Perspectives
All 23 providers agreed that couples – especially women – are under immense social pressure to have children. As one provider said, “Sometimes there is a lot of pressure on the woman to get pregnant in the first cycle itself. They go through a lot of psychological strain in such circumstances.” Another said: “Women generally come with a lot of desperation because of the social ridicule to which they are subjected”.
According to the providers the existence of this social pressure justified the rapid propagation of ARTs. They described the techniques as benefiting women. “These technologies provide solutions to those couples who are desperate to have their own children and are okay with (doing) everything to have a child”, said another provider.
The providers stated that since women bear the disproportionate burden and social stigma of infertility and childlessness, they would certainly be willing to subject themselves to all forms of medical interventions in order to bear a child, regardless of the physical, psychological and economic costs that these may entail. By doing so, they reinforce the socially constructed ideal of womanhood which entails a linear progression from marriage to motherhood. This ideal excludes alternate forms of parenthood or voluntary childlessness.
Women’s Perspectives
Women’s narratives revealed the various subtle and obvious ways in which social pressure operated on them.
I was living in a joint family and I had to shift away with my husband due to the constant pressure to conceive and give birth. My husband is very keen on having a child. I would have preferred not to have one as it will be very difficult to bring up the child in our advancing age, but he is very keen. Though people did not say it directly, I could sense that I was being treated differently. I was not invited for auspicious functions. I could sense them watching us. There is no family pressure as such from anyone, but I myself feel the guilt for not being able to conceive even after six years of marriage. There is a feeling of emptiness (‘khali khali lagna’) from within, which is difficult to explain to others.
These responses highlight the various pressures, including shades of coercion, in the lives of married women who do not have children. These pressures are not only manifest in the behaviour of family and neighbours, they are also internalised so that women feel guilty for not being able to perform what is believed to be their natural role as mothers after marriage. The women describe the external social pressures they face; and they also describe personal desires or needs: “It was specifically my wish, or, rather, our wish, to have a baby of our own”.
In such a situation it is difficult to distinguish between an individual woman’s conscious wish to have a child and the socialisation which makes married women feel incomplete unless they have given birth to a child. Motherhood is viewed as the woman’s destiny. Women often hold themselves responsible for their childlessness, even when it is the man who has a fertility problem. This social pressure on women to bear children has enabled the rapid growth of the ART industry in India.
III Expectations of the Desired Child
Providers’ Perspectives
According to providers, couples seeking donor insemination or ova look for certain social and physical characteristics in these donors. The most commonly specified characteristics were “fair”, “young”, “well-educated” and “from a good social and economic background”. Also mentioned were: “intelligent”, “healthy”, “same religion and caste” and “good looks”.
There are demands for fair skin. In one instance, an Indian couple living in Kuwait, who are themselves dark skinned, wanted a fair skinned child. In another instance, a couple wanted sperm from a fair skinned man even though the husband’s sperm was okay, as the husband was dark skinned. We assure patients that we are not getting sperms from ‘rickshawwallahs’ but from men of good families.
The overwhelming concern for the recipient couple as articulated by the providers was that the child should “look as if born from wedlock”. On the one hand, the providers mentioned that certain characteristics were accorded high value in society and there was a demand for them. They also said that the couples were concerned about maintaining the integrity of the marriage followed by childbirth so that the outside world did not know that there had been an artificial process involved.
It was interesting that the providers’ perceptions of essential characteristics usually echoed the couples’ listing what was desired. As providers and couples seeking treatment are also part of the same society and imbibed the same values, they are likely to think that these characteristics are essential. Thus the ART industry promises to enable the reproduction of a baby with characteristics representing the appropriate caste, religion and class.
IV Nature of Information and Counselling Provided
Providers’ Perspectives
Twelve out of 23 providers responded to questions on the nature of information and counselling given to women undergoing these procedures. The information provided to the couples consisted largely about the procedures, success rates and costs. Information about possible side effects was either not provided or restricted to the more common and relatively milder complications. Besides, often the providers used a lot of medical terminology, which made it difficult for couples to understand them.
With regard to counselling one provider said, “Counselling is required only for couples in special cases where both the husband and wife have thalassaemia or when donor sperms or eggs will be used”.
One of the providers stated that it was difficult to inform counsellors of the technicalities of the procedures involved. Another stated that the women feel satisfied only when counselled by the doctor.
Whenever people come for any medical treatment, it is good medical practice to give them complete information so that
Economic and Political Weekly June 9, 2007 they can make a truly informed choice. In infertility treatment this must include giving information on the treatment’s side effects, complications and its efficacy, preparing couples for the possibility of repeated failures to conceive, and offering them alternatives to treatment and costs. Counselling, ideally by trained counsellors, is especially important in infertility treatment. Women seeking treatment are already under social surveillance, and experience tremendous stress; this stress is further magnified during the infertility treatment as they are under pressure for the procedure to succeed.
Women’s Perspectives
Eight women said they had received some information, but only on the procedures and their success rates. One woman said that she was categorically told by the provider that there would be no side effects or complications. Three women were given an information brochure at the time of registration for the IVF procedure. Ten women said they did not know much about the treatment as the doctor was always too busy or they were hesitant to ask.
One woman’s response summed up the general reluctance to ask questions: “I am going for an IUI today. She has prescribed me treatment but I have not been able to talk to her about anything. The problem with asking the doctor is also that they are so busy that they very often do not explain to you clearly whatever you want to know. If I ask, she might get angry, so I did not ask anything. Moreover, they often explain in English so you cannot comprehend half of it. What to do, I studied in a Hindi medium school that is common in Haryana.”
Though some women expressed their dissatisfaction with the lack of information, others felt that the doctor might have told them more – if they had asked. But they hesitated to ask the doctor, for fear of offending him/her.
Women often expressed the belief that it was their own responsibility to ask about such information and not the doctor’s duty to provide it to them voluntarily. Thus, in most cases they did not blame their doctor for not giving the information; they felt that it was their lack of experience or knowledge which made them refrain from asking questions.
Informed Consent
Providers’ Perspective
Nine of the 23 providers said that they used informed consent forms. Three of them stated that their informed consent forms were reproduced from the ICMR ethical guidelines on ARTs. Only one provider used informed consent forms in English as well as in the local language.
Two providers claimed that all side effects are mentioned to the women clearly. “We explain everything to them; sometimes they sign the form without even reading it.” Three providers stated that informed consent forms are basically disclaimers to ensure
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Economic and Political Weekly June 9, 2007
that the clinic would not be held responsible in case of any complications or problems.
Women’s Perspective
Seven women reported signing consent forms and four said that their husbands had signed on their behalf. Fourteen did not sign any informed consent forms. Regarding the content of the informed consent forms, only one of the 25 women reported that she had read the form and that it contained information on side effects and success rates. Another woman who signed the form said, “The informed consent form was in English. As we don’t understand English, the doctor read out the form in Telugu. He said that there may be some side effects and also that the success rate was low.”
Not all the women in this group gave their informed consent before undergoing ART procedures. Sometimes the informed consent forms were signed by the woman’s husband. All the necessary information needed to make an informed choice was not usually disclosed. Moreover, the forms contained a lot of medical terminology which made it difficult for a layperson to understand them.
Information Regarding Egg Retrieval and Implantation and Preservation
Providers’ Perspective
Through conversations with the providers it became clear that there was a wide range in the number of eggs retrieved – from five to 16 eggs. The providers stated that the number removed depended on individual women. In one case, a provider claimed to have retrieved 35 eggs. Regarding the maximum number of embryos implanted in one IVF cycle, eight providers responded saying that it varied between two to five, with three being the most common.
Women’s Perception
Only three women of 25 claimed to have had clear information on the number of eggs retrieved, implanted and the status of the leftover embryos. One woman knew that embryos were cryopreserved but had no idea of the number of eggs retrieved or implanted. The remaining 21 women had no clue of how many eggs had been retrieved during their treatment. “We don’t have any idea of how many eggs were retrieved or how many were implanted. Only the doctor knows that.” Retrieving large numbers of eggs (and certainly in the case of retrieval of 35 eggs) can involve hyper stimulation of the ovaries through hormonal drugs. This can result in serious medical complications for women.
Success of These Techniques
As Quoted by the Providers
Providers asked about the success rate of their procedures often quoted the implantation rate or the chemical pregnancy rate (pregnancies confirmed by blood and urine tests but in which the embryo may not be formed or develop beyond the earliest stage) as the success rate, rather than the live births rate or the “take home baby” rate. According to one provider, “The success rate of IVF can be 60 per cent if the reason for going for IVF is only male factor infertility. Moreover, if the women are young, the success rate can go up to 70 per cent.”
Twenty-one providers commented on the success rate of IVF. Among these, 17 gave the implantation rate as the success rate. This also varied widely and ranged between 10 per cent and 50 per cent. Only three quoted the take home baby rate as the success rate directly, without being asked for it. The take home baby rate ranged from 20 per cent to 30 per cent. One provider did not mention any specific success rate for IVF, but said that 90 per cent women get pregnant in three cycles.
A few providers justified quoting the implantation rate rather than the live birth rate by saying that women were referred to them for infertility treatment and went back to their gynaecologists once they conceived. Hence it was not possible to keep track of the take home baby rate. However, quoting the implantation rate as the success rate is an attempt to mask the actual success rate, i e, the live birth per IUI/IVF cycle. The providers use terms like the implantation rate and the chemical pregnancy rate synonymously with the live birth rate to manipulate definitions of pregnancy to their own advantage, using them to promote ARTs in general and their provision of them in particular.
It is also difficult to have a clear idea of the success rates of these technologies in the Indian context, given the absence of a central registry for ART clinics. This problem is compounded by the use of varying definitions for success rates.
Success of the Techniques as Perceived by the Women
One of the most striking findings in this study was the extent to which women were willing to endure the treatments even when they did not work. Thirteen of the 25 women went through IUI. Five women conceived, one in the first cycle, one in the second cycle, two in their third cycle and one in the fifth cycle. Three women reported having undergone three cycles; four women had undergone six cycles. One woman had gone through eight cycles and not one of these had resulted even in an implantation of an embryo. The remaining 12 women had undergone more than one procedure. One woman said, “I had five IUIs followed by two IVFs, all of which failed”. Among these 12 women, only three had become pregnant. As one woman said, “Before I became pregnant, I underwent five IUIs, one IVF and one IVF-ICSI”.
It is extremely disconcerting that so many women, even in our small study sample, repeatedly put themselves through procedures in order to bear a child. This is how couples enter the slippery slope of reproductive technology. Women considering assisted reproduction should be given a realistic picture of their chances. Selectively quoting success rates presents a rosier picture of ARTs than may actually be the case. It also betrays the faith that women put in their healthcare providers.
V Side Effects and Complications of the Drugs and Procedures
Providers’ Perceptions
Nineteen of the 23 providers spoke about the side effects and complications of the drugs and procedures. In general, they said that there were no major health risks. It was only after probing
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that they mentioned risks such as ovarian hyperstimulation syndrome and side effects such as weight gain but tried to minimise them by presenting it in the form of a risk-benefit analysis. If the benefits outweigh the risks then it is worth taking the risks. There are no major side effects of the drugs used for the infertility
treatment. Side effects are nothing compared to the lifelong problem
a woman faces due to infertility.
“There are no side effects of these techniques; it is basically assisting the natural process,” said one provider. However, on probing, he added, “There are chances of multiple births, twins mainly, but we don’t consider this as an adverse effect”.
In an attempt to justify the use of potentially risky techniques, side effects are portrayed as minor, negligible in comparison to the necessity and desirability of having a child. Providers also attempted to individualise side effects: “Drugs are used to stimulate the process, but side effects vary from person to person. For example, if I have aspirin it may not react, but for some other person it might.”
The drugs and medical procedures used in ARTs to stimulate the production of eggs, or for oocyte retrieval, foetal reduction and embryo implantation, are associated with a wide variety of complications. Women on these medications can experience any of the following: dizziness, fatigue, mood changes including manic depression, and serious allergic drug reactions. Weight gain and oedema are other side effects. The drugs are known to increase the chances of ovarian cancer, and can also cause the life-threatening ovarian hyper-stimulation syndrome. Ectopic pregnancies that are life threatening to the mother and multiple pregnancies that are high risk to the foetuses are known to occur more frequently in women undergoing fertility treatment. Procedures such as egg retrieval carry with them the risk of uterine perforation.
A recent press report from Kolkata records the transmission of HIV through semen donation [Dhar 2003]. This can happen when donor sperm is not screened properly. Clinics often overlook or underplay such health risks while providing information to the women undergoing these treatments.
“(A) high possibility of miscarriages takes place in cases where women do not take proper care of themselves after conception”. This provider attempted to place the burden of risks and complications of the procedures on the women who “willingly” undergo the procedure to have a child.
Women’s Experiences
Three women categorically stated that they “did not experience any discomfort” from the procedures, or that “there were no side effects of the drugs”. “I have not felt medical complications in the procedure. The only thing is that I am getting fat and there is heaviness in the chest.”
Ten women mentioned what were clearly side effects of the drugs. Primary among the side effects were weight gain, fatigue, increased micturation, mood swings, giddiness, skin rashes, fevers, hot flashes and a feeling of bloatedness. One woman stated that she reacted to the drug metformin. “I had a bloated stomach and pain in the abdomen”. Another woman stated: “There are definitely side effects of the various medicines that I have been taking. I have gained weight; there is a constant feeling of giddiness also. Intake of these medicines sometimes results in a sudden rise in body temperature, and I feel very hot.” Two women described the pain of the laparoscopy…“uo durbin laga ke (the way the laparoscope lens was inserted). That was painful…”
However, it seemed that most women had accepted the pain and side effects as something minor and integral to the “treatment”. Their providers had offered them this risk-benefit analysis and asserted that all this had to be endured in order to get the child that they desired.
VI Experiences and Perceptions Articulated by the Women
Seventeen women described their experiences and perceptions of the treatment. Eleven of them stated that the treatment, above all, had been “mentally exhausting”, “tiring”, and “frustrating”. One woman said: “I am generally a person with a fighting spirit but I have gone through moments of utter desperation and depression and I feel that the world has come to a halt. Once the IVF cycle fails, you feel utterly dejected. You feel frustrated.”
Another woman described her experience of the procedure:
The last time I was here, the doctor said I had to go for Oral Glucose Tolerance (OGT) test, some kind of an insulin/sugar test. If the report was positive, then I was to take the drug Metformin. When I called up to check the result of the test, the doctor got angry and asked me to come and visit her and not to inquire over the phone. She also told me to start the medicine. If they can start the medicine without the report, then what was the need to ask me to go in for the test? It’s just a waste of Rs 2,000. What’s it to them?
Another woman said: Every month you hope that you will skip your menstruation and conceive. It is a feeling of complete helplessness when you have your menstruation, you can’t even explain it. You have only 12 chances of conceiving in a year, and suddenly this seems such a small number. It is very important to have a positive mental attitude; otherwise it becomes very difficult to remain stable. Patients like us who have been undergoing treatment for quite some
time now and have been going from one doctor to the next, understand quite clearly that this is a trial and error science. Six women expressed their dissatisfaction with the providers
or blamed their own luck in not being able to conceive. The rest refused to talk about the experience at all. One woman questioned the science itself: “They say science has progressed but I don’t understand, with my limited knowledge, how it has progressed. Even during the Mahabharata, Pandu, Dhritrashtra and Vidur were all sons of Vyas Muni – isn’t it so? Even Pandu’s sons were born of different gods.”
Thus, women’s perceptions ranged from looking at ARTs as a “gamble”, “a trial and error science”, to viewing its success as dependent on their individual luck and god’s will. Thus they use both medical and socio-cultural languages to understand the process and also to gain a new understanding of the body and the process of reproduction. Questions about the “newness” of science by drawing parallels with mythology coexist with an unquestioned hope that scientific intervention will create a miracle.
Impact on Life
Women’s Experiences
Women who were self-employed or working said that “frequent visits to the clinic”, “waiting for long hours” and “travelling long distances” affected their work and general routine. “It affects
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my work pattern and my business suffers as I have to come to the doctor very frequently”.
During that phase (of going through IVF), I would come in the
morning on an empty stomach for some tests. The report would
be available only after 4 p m I would sit here the entire day, bring
my ‘roti’ and eat here. What other option do we have?
I have come all the way from Kanpur. We visited a few doctors
in Kanpur and then our relatives in Delhi told us about this doctor.
We have been with her for eight months, but have had no success
yet. We have a 10 year old son but he is not a normal child. It
is difficult to come all the way from Kanpur, and to leave our
son with relatives is even more difficult.
One woman said that the treatment had affected not only her work but also her sexual life: “Let’s accept it that the process is very frustrating. You don’t have sex because you want to. But you have sex because you have to. Once I conceive, maybe I won’t ‘do it’ at all.”
Four women said that the fertility treatment had not affected their work or general routine but they felt that this was so because they were not working; the routine of their husbands was affected as they had to accompany them: “I am not working, so I can adjust and come over whenever the doctor calls me. However, it disrupts the routine of my husband as he is an aspiring software engineer.”
Many trends emerge in these narratives. For some, going through this process has affected their general routine, work or sexual life. Those who were not professionally engaged felt that their work and general routine could be compromised vis-à-vis their husbands’. They did not perceive their household work as important enough compared to their husbands’. It was also felt that going through this process had affected their sexual life which had become a mechanical way of procreation under the medical “gaze”. However, women who had been going through this process for a long period felt that the process had become a part and parcel of their daily routine; it had become the axis on which their lives now revolved. Since motherhood is central to the social construction of womanhood, one can understand why women who fail to bear a child often subject themselves again and again to the long drawn and often perilous procedures of ARTs.
Why Adoption Is Not an Option
Providers’ Perceptions
On the question of adoption as an option, only 15 providers responded. Among these 15, eight providers were of the view that adoption is the last resort, to be considered only when all other treatment options fail. However, three other providers felt that people who were open to adoption would not come in for the treatment at all and that it cannot be imposed on couples as a viable option. Two other providers felt that some people go in for adoption if they require donors. The remaining two providers said that they only recommended it to couples who, in their view, could not afford expensive ART procedures.
Women’s Perceptions
Nineteen women shared their thoughts on adoption as an alternative. Eight women among these did not really consider it as an option because “I want my own child” and “there was always a difference between your child and someone’s child whom you bring up as your own”.
One woman shared her dilemmas about adopting a child: “We live in a joint family and have a huge business, and so, I don’t want the child to grow up where everybody alienates him/her because he/she does not carry our gene pool. Moreover, the process of adoption is so difficult. How would you be sure that the baby does not have major diseases? I am not saying that there won’t be people who would willingly adopt a mentally handicapped child. But, I might not be in a position to do so – so how would I get assured that I am adopting a child who does not have thalassaemia. These factors do come in.”
Two women said that they had not thought about adoption because “the doctor never told us that we don’t have hope of conceiving. He said I would conceive through IVF.” Six women said that they had thought of adopting a child at some point. Three said that though they themselves were open to the idea, they had faced resistance from their husbands and families.
Most of the women wanted to give birth to a biologically related child and hoped that this might be possible with ARTs
– a hope that had been given to them by their doctors. While for some women adoption was the last resort, for others it was not an option at all. Even those who had thought about it were still negotiating their beliefs and societal notions of what it means to have a child. What was also important was how the issue of adoption gets closely linked to issues of fertility and infertility.
VII Conclusion
The findings of the study highlight a number of issues surrounding ARTs: the social implications of childlessness and the importance of motherhood; the fragmented nature of the information imparted to the women on the treatment’s success rates, side effects, etc. Alternate possibilities of voluntary childlessness and adoption never find a place in this market-driven ideology of assisted reproduction. As a result, women keep trying to have a child through these techniques. The technologies also provide the scope for having specific traits in the child, which are desired and valued in society.
The fundamental aim of our study was to bring these issues in the arena of public debate, thereby raising awareness about ARTs and their numerous implications and potential drawbacks.
EPWEmail: sama.womenshealth@gmail.com
Notes
1 Dr Mukherjee committed suicide in 1981, reportedly because of the medical community’s criticism of his claim. 2 Website, Indian Society for Assisted Reproduction, http:// www.isarindia.net/accessed in September 2006.
3 Sama-Resource Group for Women and Health is a Delhi based women’s group working on health from a larger perspective that links women’s well-being with issues not only of health, but also those integrated with livelihood, violence and all other issues that affect people’s lives, especially those of women. Sama works closely with tribal, dalit and other marginalised communities and has made interventions through various activities like community-based training, action research, advocacy and material development. Sama would like to thank Sandhya Srinivasan for editing the paper.
References
ICMR (2005): National Guidlines for Accreditation, Supervision and Regulation of ART Clinics in India, ICMR. Sujoy Dhar (2003): Health: HIV Case Shows Need to Fix Rules on Assisted Reproduction, Inter Press Service, Kolkata, June 5.
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