Ivf Ethics Essay Ideas
Division of Reproductive Endocrinology and Infertility, Department of Gynecology and Obstetrics, Johns Hopkins Medical Institutions, Phipps 264 600 N. Wolfe Street, Baltimore, MD 21287, USA
Academic Editor: B. S. Garg
Copyright © 2012 Paul R. Brezina and Yulian Zhao. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Background. While assisted reproductive technology (ART), including in vitro fertilization has given hope to millions of couples suffering from infertility, it has also introduced countless ethical, legal, and social challenges. The objective of this paper is to identify the aspects of ART that are most relevant to present-day society and discuss the multiple ethical, legal, and social challenges inherent to this technology. Scope of Review. This paper evaluates some of the most visible and challenging topics in the field of ART and outlines the ethical, legal, and social challenges they introduce. Major Conclusions. ART has resulted in a tectonic shift in the way physicians and the general population perceive infertility and ethics. In the coming years, advancing technology is likely to exacerbate ethical, legal, and social concerns associated with ART. ART is directly challenging society to reevaluate the way in which human life, social justice and equality, and claims to genetic offspring are viewed. Furthermore, these issues will force legal systems to modify existing laws to accommodate the unique challenges created by ART. Society has a responsibility to ensure that the advances achieved through ART are implemented in a socially responsible manner.
ART is currently a commonplace technology that has successfully treated millions of infertile couples the world over. However, the explosion of this technology has introduced a myriad of new social, ethical, and legal challenges. This paper evaluates some of the most visible and challenging topics in the field of ART and outlines the ethical, legal and social challenges they introduce.
2. Scope of ART Utilization
Infertility has traditionally been an area of medicine in which physicians had limited means to help their patients. The landscape of this field changed dramatically with the announcement of the birth of Louise Brown in 1978 through in vitro fertilization (IVF). This historic moment was eloquently encapsulated by Howard Jones who observed “Eleven forty-seven p.m. Tuesday, July 25, 1978, was surely a unique moment in the life of Patrick Steptoe. This was the hour and minute he delivered Louise Brown, the world’s first baby, meticulously, lovingly, and aseptically conceived in the laboratory, but popularly referred to as the world’s first test tube baby” . The importance of this birth to scientists, clinicians, and most particularly infertile patients throughout the world cannot be overstated. In several short decades, IVF has exploded in availability and use throughout the world.
Worldwide, more than 70 million couples are afflicted with infertility . Since the first successful IVF procedure in 1978 , the use of this and related technologies has expanded to become commonplace around the globe. Over the past decade, the use of ART services has increased at a rate of 5–10% annually [4, 5].
In 1996, approximately 60,000 IVF cycles were initiated in the United States with approximately 17,000 clinical pregnancies and 14,000 live births . Currently, IVF accounts for approximately 1% of all live births in the United States . As of 2009, 3.4 million children have been born worldwide after ART treatment, and ART utilization is currently increasing at a rate of 5–10% annually in developed countries .
3. Reporting Regulations
The widespread use of this technology throughout the world has prompted a desire by the public, governmental bodies, and professional organizations to create mechanisms that evaluate the utilization of ART. Advances in the arena of assisted reproductive technologies (ART) are accompanied by ethical and societal concerns. Legislation and professional societies have attempted to address these concerns for some time. For example, in 1986, the American Fertility Society first published guidelines for the ethical implementation of ART in the United States . The dynamic nature of ART and the rapid evolution of the field result in constant paradigm shifts that require frequent and comprehensive evaluation by professional organizations and society alike.
In the 1980’s, concerns surrounding ART focused on the safe administration of gonadotropins, transparency of pregnancy data from clinics, and addressing economic barriers to ART access. Some of these issues, such as reporting requirements for ART pregnancy results, have also been mandated with legislation in many nations . Furthermore, ART reporting requirements generally include the number of embryos transferred. This measure has been extremely important in correlating the risk of multiple gestations with the transfer of 2 or more embryos. However, in many nations, reporting regulations are not accompanied by legislation defining practice patterns. For example, in the United States, while physicians are required to report the number of embryos transferred in an IVF cycle, there are no laws that state the allowed number of embryos transferred .
Through centralized mandatory reporting registries, general estimates of IVF activity are available in many nations. In an effort to define current IVF statistics and to make this information more transparent and available to patients, the Fertility Clinic Success Rate and Certification Act of 1992 was created in the United States . This law requires clinics providing IVF in the United States to report specific information regarding IVF cycles, including pregnancy rates . This reporting data is only reported on IVF cycle outcomes and does not include detailed information regarding the maternal or paternal medical history . In other countries, similar national registries exist , making it possible to evaluate data from IVF cycles on both a national and international scale. A detailed accounting for ART reporting and regulations across the globe is available from the International Federation of Fertility Societies (IFFS) . In their 2010 report, the IFFS reported ART outcomes data from 59 countries .
Such laws were implemented in an attempt to ensure that patients may be informed as to which clinics have superior ART pregnancy results. In some instances, however, this has led to some clinics “cherry picking” patients to improve their overall pregnancy results. This has actually become a barrier to receiving ART for many patients with a relatively poor pregnancy prognosis.
4. Practice Regulations and Multiple Gestation Pregnancies
Federally mandated regulations, however, are not limited to registries. Increasingly, nations have enacted legislation that defines the parameters for acceptable practice of ART. The transfer of multiple embryos in a single cycle increases the rates of multiple births . Because of the increased social costs and health risks associated with multiple births, legislation or guidelines from professional societies have been introduced in many countries restricting the number of embryos that may be transferred per IVF cycle in an effort to limit the incidence of multiple gestations [9–11]. Indeed, a study in the United Kingdom found that the total health care system costs following a singleton birth were £3313, £9122 following a twin birth and £32,354 following a triplet birth . Additionally, the health risks, both to the mother and the infant, increase dramatically with increasing number of infants . In the United States in 2007, the number of embryos transferred per cycle ranged from 2.2 in women under 35 to 3.1 in women over 40 years of age (CDC). Multiple birth rates in the United States in 2007 ranged from approximately 35% in women under 35 to 15% in women over the age of 40 . In Europe, the approximate number of embryos transferred in the year 2006 was one (22%), two (57%), three (19%), or four (1.6%) . In 2007, 79.2% of European births were singletons, with a twin rate of 19.9% and a triplet rate of 0.9% .
Pregnancy rates associated with IVF are high compared to those seen in the early days of the procedure. The current efficiency of IVF is more cost effective and efficacious in achieving pregnancy than other modalities, such as injectable gonadotropins coupled with intra uterine insemination (IUI), which traditionally some have preferred . The increased efficiency of IVF has also resulted in an increased rate of multiple gestations. Recent data suggests that single embryo transfer, coupled with subsequent frozen embryo transfer, results in equivalent pregnancy rates compared with the transfer of multiple embryos, without an increase in multiple pregnancy rates . Additionally, single embryo transfer would inherently decrease maternal and infant health risks associated with multiple gestation pregnancies . Therefore, a trend toward single embryo transfer is likely to increase in the future.
Variability of legislation regulating IVF exists in different countries and even states/provinces within a single nation . For example, in an effort to minimize multiple gestation pregnancies resulting from ART, some laws place limits on the number of embryos that may be transferred, cryopreserved, or fertilized per IVF cycle [5, 6, 15, 16]. In some cases, these regulations or fiscal pressures result in couples traveling across international border to obtain treatments that are unavailable in their native country . This practice, known as cross-border reproductive care (CBRC), is thought to account for as much as 10% of the total IVF cycles performed worldwide [17, 18].
5. Financial Aspect for IVF Treatment
Perhaps one of the most obvious ethical challenges surrounding ART is the inequitable distribution of access to care. The fact that significant economic barriers to IVF exist in many countries results in the preferential availability of these technologies to couples in a position of financial strength . The cost of performing ART per live birth varies among countries . The average cost per IVF cycle in the United States is USD 9,266 . However, the cost per live birth for autologous ART treatment cycles in the United States, Canada, and the United Kingdom ranged from approximately USD 33,000 to 41,000 compared to USD 24,000 to 25,000 in Scandinavia, Japan, and Australia . The total ART treatment costs as a percentage of total healthcare expenditures in 2003 were 0.06% in the United States, 0.09% in Japan, and 0.25% in Australia . Some have maintained that the cost for these cycles pales in comparison to the social advantages yielded by the addition of productive members of society . This is especially true in societies that have a negative or flat population growth rate coupled with an aging population .
The funding structure for IVF/ART is highly variable among different nations. For example, no federal government reimbursement exists for IVF in the United States, although certain states have insurance mandates for ART [4, 19, 22]. Many other countries provide full or partial coverage through governmental insurance [4, 9]. In many instances, long waiting times for IVF through these government programs encourage couples to seek treatment in private fertility centers that accept remuneration directly from the patients [4, 23, 24]. In the United Kingdom, for example, only approximately 25% of all IVF cycles performed are funded by the National Health Service .
6. Preimplantation Genetic Testing
Preimplantation genetic screening (PGS) and diagnosis (PGD) offer the unique ability to characterize the genetic composition of embryos prior to embryo transfer. Given the recent successes of these technologies, the broader implementation of this technology in the future is likely. Although controversial, using PGD to choose embryos solely on the basis of gender is currently being practiced [25, 26]. Sex selection in the proper setting may offer a substantial health benefit. For example, choosing to transfer only embryos of a certain sex may confer a therapeutic benefit if used to avoid a known sex linked disorder. However, sex selection PGD purely for the preference of the parents could conceivably, if practiced on a large scale, skew the gender proportions in certain nations where one gender is culturally preferred.
In the near future, with refinements in microarray technology and the defining of genetic sequences associated with certain physical characteristics, it is conceivable that specific physical or mental characteristics may be evaluated to guide the decision as to which embryos to transfer. This possibility raises concerns on both ethical and practical levels. Of more concern is the possibility that in the future, technology will permit the manipulation of genetic material within an embryo. Rigorous public and scientific oversight of these technologies is vital to ensure that scientific advances are tempered with the best interests of society in mind.
7. Fertility Preservation
Female fertility is well documented to decrease with age [27, 28]. Consequently, much research has been conducted aimed at preserving female fertility before advanced age is realized. Additionally, fertility preservation for individuals afflicted with cancer has important implications as often the chemotherapeutic agents used to treat cancer are toxic to the ovary and result in diminished ovarian reserve and reduced fertility. While techniques for freezing sperm and embryos are well established, techniques for freezing oocytes and ovarian tissue are still considered experimental . Multiple techniques including oocyte cryopreservation and preservation of strips of ovarian cortex with subsequent reimplantation and stimulation have been described, with some pregnancy success [30–33]. Fertility preservation for cancer patients using in vitro maturation (IVM), oocyte vitrification and the freezing of intact human ovaries with their vascular pedicles have also been reported . As of 2008, more than 5 babies had been delivered through IVF following ovarian tissue transplantation . Many have suggested that, prior to being treated for cancer, women should be offered fertility preservation measures as outlined above .
Recently, several laboratories have demonstrated the ability to successfully cryopreserve oocytes following an IVF cycle. These developments have profound implications. As the birth control pill gave women the ability to prevent pregnancy, oocyte cryopreservation may give women the flexibility to preserve their fertility potential, starting at a young age, while postponing childbearing. However, as this technology at the present time in many countries is generally only available to those with financial means. This poses ethical and social issues that will certainly see more attention in the future.
8. Gamete Donation
The use of donor gametes, either in the form of donor sperm or donor oocytes, is commonplace in ART. The use of donor sperm can be traced to the 1800’s . In the mid 1980s, oocyte donation was introduced . In recent years, issues surrounding the use of donor gametes have become increasingly visible . Women donating oocytes must undergo IVF. Due to the inherent medical risks associated with IVF, including ovarian hyperstimulation syndrome and surgical risks, a central concern of allowing women to be oocyte donors includes adequate informed consent . Consent, in addition to outlining these medical risks, should include counseling regarding the emotional benefits and risks of donation with an emphasis that long-term data regarding these risks are lacking . Additionally, it is considered an ethical prerequisite that oocyte donors participate voluntarily and without coercion or undue influence . Some have expressed concern that financial compensation of oocyte donors may lead to exploitation as women may proceed with oocyte donation against their own best interests, given the inherent medical risks involved . The concept of commodification, that any “buying or selling” of human gametes is inherently immoral, is an additional argument used against remunerating women serving as oocyte donors . Due to the substantial controversy surrounding oocyte donation, especially the amount of financial compensation may be given to an oocyte donor, federal regulations governing this practice are constantly evolving and differ substantially from country to country .
Another ethical and legal issue surrounding the use of donated gametes is to what extent the anonymity of the donor should be preserved. The issue of anonymity as it relates to gamete and embryo donation is emotionally charged. Indeed, the ability of human beings to know their genetic roots is universally important, at the core of self identity. Either egg and sperm donors may choose to or not to be anonymous, though the vast majority in both groups generally chooses anonymity . The American Society for Reproductive Medicine has identified four levels of gamete donor information sharing depending on the wishes of the donor and recipient parties . Recently, however, there is, increasing consideration of the rights of offspring as it relates to donor gametes and anonymity . Advocates for allowing either gamete donors or their offspring to break anonymity cite the medical advantages of sharing medical information with their genetic offspring, in the case of the donor, or learning about their genetic history directly, in the case of offspring [41, 42]. Others simply argue that both donors and offspring have an inherent right to meet and develop a relationship . Recent court rulings suggest that these rights will become more visible in the future. For example, in the British case Rose v Secretary of State for Health  EWHC 1593, the court ruled that based on the Human Rights Act, donor offspring could obtain information about their genetic parents despite previously established anonymity . The ethical and legal issues surrounding anonymity and gamete donation are sure to be a centrally debated issues within the field of ART for the foreseeable future.
9. Embryo Donation
IVF cycles often result in couples transferring several embryos and cryopreserving other embryos produced by the cycle, presumptively for the purpose future pregnancy. However, in many instances, these surplus embryos are never used by the genetic parents and therefore are stored indefinitely . The number of such embryos stored internationally is surprisingly high. In the United States alone, it is estimated that over 400,000 embryos are currently cryopreserved, many of which will not be used by their genetic parents . The ethical and moral issues surrounding how to deal with these surplus embryos have been the source of much debate. In general, four possible fates for these embryos exist :(1)thawing and discarding,(2)donating to research,(3)indefinite storage,(4)donating the embryos to another couple for the purposes of uterine transfer.
All of these strategies have staunch supporters and detractors. Not surprisingly, there are a myriad of laws in different countries governing many aspects of how a human embryo that has been cryopreserved may be handled [44, 45]. The use of embryos for the purpose of research, specifically as it relates to human stem cells, has also been a source of fierce debate internationally and has resulted in substantial regulation that varies substantially from nation to nation [46–49].
10. Surrogacy and Gestational Carriers
Another topic of ethical, social, and legal debate surrounds the use of surrogacy and gestational carriers. Surrogacy is defined as a woman who agrees to carry a pregnancy using her own oocytes but the sperm of another couple and relinquish the child to this couple upon delivery . A gestational carrier, by contrast, involves a couple who undergoes IVF with their genetic gametes and then places the resultant embryo in another woman’s uterus, the gestational carrier, who will carry the pregnancy and relinquish the child to this couple upon delivery . Currently, the use of gestational carriers is far more common than that of surrogates .
As with donor gametes, surrogates and gestational carriers are subject to significant medical and emotional risks from carrying a pregnancy and undergoing a delivery . As such, extensive counseling and meticulous informed consent are required . Some also are concerned that the use of surrogates and gestational carriers is a form of “child selling” or the “sale of parental rights” . Additionally, the rights of the surrogate or gestational carrier to not relinquish the infant following deliver are not well described . In fact, legal precedent in some states within the United States has actually upheld the right of a birth mother, regardless of genetic relation to the child, to retain parental rights despite the existence of a preexisting gestational carrier contract .
Another central concern surrounding the use of surrogates and gestational carriers is the possibility that financial pressures could lead to exploitation and commoidification of the service [50–53]. The mean compensation for a gestational carrier in the United State in 2008 was estimated at approximately $20,000 . In contrast, a gestational carrier in India receives an average of $4,000 for the same service . Regulation of surrogates and gestational carriers varies widely from nation to nation and even within regions of individual countries [50, 52–56]. Due to these financial and legal considerations, international surrogacy has emerged as an emerging industry, especially in developing nations . This practice has exacerbated the already difficult ethical and legal issues surrounding gestational carriers . At the present time, issues surrounding issues of individual rights, commoidification, exploitation, citizenship of the offspring of international gestational carriers, and even fair trade are largely unresolved internationally [52, 55].
11. Possible Deleterious Effects of ART
There are questions that remain outstanding regarding the use of IVF. Conflicting data exists about the risks of IVF on the developing embryo. Multiple studies have failed to find a clinically relevant association between IVF or embryo cryopreservation and adverse maternal or fetal effects [57–59]. Other studies have suggested that infants of IVF pregnancies may be at a small but statistically significant increased risk for rare epigenetic and other abnormalities [60–62].
Despite this controversy, there is a general consensus that IVF confers a small but measurable increased risk for a variety of congenital abnormalities including anatomic abnormalities and imprinting errors as compared to the general population . Some maintain, however, that this is secondary to an increased baseline risk for these problems in the population of infertile patients . Regardless of the cause, this small increased risk, while statistically significant with extremely large sample sizes, will likely not be a powerful enough factor to dissuade infertile couples from pursuing parenthood through IVF.
ART has emerged as one of the most widely adopted and successful medical technologies in the last century. While giving hope to millions of couples suffering from infertility, ART also has presented new ethical, legal, and social questions that society must address. Many countries have taken steps to regulate certain aspects of ART. Specifically, what regulations and laws should be in place for ART reporting, social inequities that may arise from financial barriers to ART, genetic testing, emerging laboratory techniques that have improved embryo and gamete survival when cryopreserved, and an individual’s right to their genetic offspring in the setting of gamete or embryo donation are aspects of ART which will become increasingly controversial and debated into the future.
However, the lion’s share of ethical and legal questions that exist surrounding ART have yet to be resolved. Society must reconcile how to fund ART in a responsible and equitable manner to increase access to care. Additionally, the myriad of unresolved issues surrounding gamete and embryo donation must be addressed in greater detail in future social and legal dialogues.
ART is a field that is dynamic and ever changing. In areas of ART such as preimplantation genetics, new technologies continually change the capabilities of ART. Due to the rapidly evolving nature of the ART, legislation is often unable to keep pace and address all of the ethical and legal issues that are constantly emerging in the field. It is therefore incumbent upon physicians to continually monitor these issues and ensure that ART technologies are offered and delivered in a manner that balances patient care with social and moral responsibility.
Conflict of Interests
The authors declare that there is no conflict of interests.
Women who suffer from fertility issues often use in vitro fertilization (IVF) to realize their wish to have children. However, IVF has its own set of strict administration rules that leave the women physically and emotionally exhausted. Feeling alienated and frustrated, many IVF users turn to internet IVF-centered forums to share their stories and to find information and support. Based on the observation of Dutch and Greek IVF forums and a selection of 109 questionnaires from Dutch and Greek IVF forum users, we investigate the reasons why users of IVF participate in online communities centered on IVF, their need for emotional expression and support, and how they experience and use the information and support they receive through their participation in the online community. We argue that the emotional concerns expressed in such forums should be taken into account by health care ethics committees for IVF-related matters in order to promote more patient-oriented care and support for women going through IVF.
Keywords: Emotions, In vitro fertilization (IVF), Internet, Health care, Ethics, Infertility
Infertility is viewed worldwide by couples as “a tragedy which carries social, economic and psychological consequences”.1 It is estimated that 10% of the population globally suffers from infertility, which is generally defined as the inability to conceive after 1 year of unprotected intercourse (Gupta 2000, p. 339). In order to combat this phenomenon and give thousands of childless couples the chance of having a child, a whole array of assisted reproductive technologies has been developed in the past 30 years. The most renowned (and most used) method of assisted reproduction is in vitro fertilization (IVF), a revolutionary method in which egg cells are being fertilized by sperm in vitro, outside the woman’s body. The process itself has high financial costs and demands a strict and intense regime of medication use, constant monitoring of hormone levels and intrusive procedures in order to retrieve eggs and after fertilization to place them back into the woman’s uterus. This process can very quickly become mentally and physically taxing to the women who go through it, as well as to their partners; the social “stigma” of infertility makes it extremely daunting, or even impossible to get proper societal support, leaving them feeling alone, tired and frustrated.
Meanwhile, in the last few years, the internet has become an increasingly expanding source of medical information on any physical and mental health condition. Internet users go online to access medical records, get detailed information on symptoms, treatments, as well as means of prevention of severe illnesses and they come across other users who are willing to extend their knowledge and private stories about their own health ailments. The anonymity possible on the web has offered the chance for people with very sensitive and private health issues to open up and ask for relevant information, or to share their story with fellow patients online. This has led into the proliferation of online medical communities for a plethora of illnesses directed at patients, relatives and friends. This tendency has certainly included online communities especially for users of IVF, since they feel more secure and within the company of “fellow patients” who understand what they are going through.
The aim of this article is to investigate the reasons why users of IVF participate in online communities centered on IVF, their need for emotional expression and support and how they experience and appreciate the information and support they receive through the participation in the online community. We argue that the emotional concerns expressed in such forums should be taken into account by health care ethics committees for IVF-related matters.
The Experience of Participants of IVF Forums
This section discusses insights from an empirical study of the experience of participants in online IVF forums. Data has been gathered by questionnaires with participants of online medical communities which center on IVF, and in particular four Dutch and two Greek IVF online communities. Answers from the forum members themselves were deemed important in order to obtain triangulation, offer more insight and confirm findings from the observations. Of the six forums that were researched, one was completely private and accessible to members only, and two forums combined public sections with private ones. In order to be able to present the research results from the private forum, permission from the forum administrator was requested and obtained. The questionnaires yielded thirty-six responses from the two Greek IVF forums and seventy-three responses from the three Dutch forums. This information offers insights into the reasons to join IVF forums, as well as the way their participation in the forum was experienced and evaluated.
Impact of IVF and Support from Others
Physical, Emotional and Relationship Impact of IVF
An IVF treatment can have a tremendous impact on women: it is a very demanding physical process, with far-reaching effects on a woman’s psychological well-being, her relationship with her partner, and her social environment. Emotions and expectations can run high and the whole process leaves the women exhausted and disheartened, as well as causing rifts in the relationship with her partner and social circle, as many of the women of the survey reported:
Emotionally I experienced mostly the breach of my privacy as annoying; constantly lying with your “lady bits” exposed and getting all kinds of treatments down there is no fun, no matter how kind and sympathetic the doctors are. That caused tension in the relationship, especially in the bedroom, in addition to the tension that the long waiting brings. Physically it was not pleasant, but it was doable with the right kind of anaesthesia.
Psychologically, the hormones make you very irritable and reacting strange to everything. Physically, there is water retention and great swelling in your belly. Financially, [costs] lots of money, and especially in the beginning of a young couple’s new life, where they have many expenses. In the relationship with your partner, due to being more irritable from the hormones but also from the general situation, you have extra demands from your husband and he cannot understand that, poor him. Family: they all look at you questioningly every time they see you, [asking] ‘are you pregnant? Did it work? Do not do this or do not do that…’ Social circle: suddenly they are all interested to hear from you and suggest solutions; everybody expects to see you with a round belly and if that does not happen, they treat you as if you are ill.
For other women, however, the experience of IVF was more mixed, since they did not gain only negative experiences, but also positive ones, like adopting a healthier lifestyle and getting closer to their partner:
Emotionally it had a great impact; so much grief. Especially painful when everyone in your environment appears to get pregnant. Fortunately the relationship has not suffered. We have grown together stronger through this.
(It was) positive. I became stronger and overcame my phobias of needles and the sight of blood.
It is quite understandable that not all women experience IVF in the same way; how one experiences a situation can depend on one’s personal make-up, specific circumstances and personal situation. Another way to affect the overall experience is the knowledge and support of others. For women going through IVF, support of third parties can make a difference between a hard, yet positive learning experience, and a difficult and isolating one.
Support from Family and Friends
Going through IVF can be a very private and delicate issue; some of the couples that are busy with an IVF treatment prefer to keep this fact to themselves; others decide to share the news with selected members of their family and social circle. The attitude from the people who are informed about the process can vary greatly; some women report that they have encountered great disinterest and lack of understanding from the people close to them which, causes great disappointment and hurt feelings:
Family shows lack of understanding and disinterest, what you do not see does not exist, and just stick your head in the sand; it does not concern them, [these] are their words.
Other women on the other hand have reported positive reactions and support from their environment regarding IVF:
Everyone who knows [about IVF] has shown complete support.
However, the majority of women have reported that even though many members of their family and friends have showed interest and concern and may be well meaning, they still do not know how exactly to approach them and show lack of understanding regarding the actual process of IVF and its actual impact, seemingly “saying all the wrong things at the wrong time”:
Sometimes the in-laws seemed disinterested, but it turned out that it was a case of a difficult topic to breach, not wanting to be confronting.
Relatives do not know about it; friends do try but if you do not have knowledge of IVF even as a concept, you do not always help even if you have every intention of doing so… I am satisfied because they are very interested.
This attitude seems to be quite prevalent among friends and relatives of women who use IVF; the lack of adequate information about what IVF actually entails, as well as hesitation to tread on such a private matter can stilt communication between women who go through IVF and their social circle. The women have encountered a more general lack of understanding and empathy regarding IVF matters; this could signify that even though the general public has become more familiar with issues of infertility and assisted reproduction, there is still a lack of understanding of the full process concerning IVF, or the deep psychological and physical impact infertility can have on women. If anything, the cultural representations of IVF as “miraculous” and “normal” (Franklin 1997, p. 189) have resulted in public perceptions of IVF as a relatively easy and very successful way of combating infertility, which negates the complexity, difficulty and ambivalence of IVF and results in inadequate understanding and support of the women who go through such a process.
One reason why others may not support IVF patients to an adequate degree is ideas about what is natural. Fertility is usually considered an essential part of womanhood and to be infertile could be seen as unnatural or not normal. Similarly, IVF could be seen as going against nature. In an ethnographic study about IVF in Greece, it is suggested that families from rural villages may fear that, for example, their grandchild produced through IVF will be abnormal (Paxson 2003). These points to the need to investigate not only the emotional concerns of IVF patients, but the emotional concerns of people around IVF patients in order to increase their understanding and empathy with IVF patients.
Reasons for Joining a Forum
For many women, the main reason to join an IVF forum was to be able to share their story with others and to read their story in turn; to receive and give advice to women going through the same experience as they are:
In order to read the experiences of others and if you are in those two long waiting weeks, you want to express your frustration to others who are also trying to get through the time of waiting.
In order to exchange views with people that can commiserate and gain strength by listening to other couples’ experiences.
Another important reason for many of the women to join a forum was the feeling of recognition that they were among people which were also sharing the same experience and also the same feelings and questions, as well as the fact that the women in the forum could offer them understanding and support that people who have not experienced IVF could not.
It is comforting to know that there are other people that are going through the same or similar problems as you are and most of the times they are feeling the same. It makes you feel less alone.
It can be deduced that women decide to join a forum about IVF in order to receive information, support, share their feelings, or feel that they are not alone in going through IVF; the forum is thought to provide them with equipment that they have difficulties in getting from their environment.
Ways of Emotional Expression
In the IVF forums, women report that they can allow themselves to express their thoughts in a very open and uncensored way; feelings of sadness, anger and frustration find an outlet, and sharing very private thoughts is not uncommon:
In your daily life people do become fed up with your story after a certain point. (They think) you should just learn to deal with it. In the forum you really can unload your frustration and also share your happiness and hope. In your daily life people do not really understand how much of an impact all this has.
One of the reasons why the women who participate in IVF forums are able to express themselves more freely is the feeling that they are among a group that understands them completely, has had the same experiences and so has deep knowledge of the feelings and thoughts concerning the whole process of IVF.
It is due to the fact that I have people with the same problem and goal ‘opposite me’, that will understand what I am going through, how I experience the attempts and the hardships that I am going through. They would not mock my longing for having a child.
For some women, the anonymity offered by the forum was an important reason for their participation and free expression, since they could safely reveal their innermost thoughts and share feelings that their own social circle was not allowed to know.
It is easy to uncover your feelings to a stranger.
Anonymity, which has been considered as a negative factor in establishing real connections and relationships online, here is a liberating factor; the anonymous nature of such forums makes it easier to create conditions “to elicit highly intimate disclosures, especially important when dealing with sensitive health problems that discourage an open discussion” (Weisgerber 2004, p. 556). The women who participate in IVF forums make use of it in order to reveal their innermost thoughts and feelings. For these women, being members of a group which shares their experience, coupled with the anonymity that they enjoy online, is a great means of expressing themselves freely without fearing they will not be understood or that what they reveal will cause negative repercussions in their everyday life.
Gains from Forum Participation, Assessment of Positive and Negative Sides
When Greek and Dutch women are asked about what they feel they have gained from their participation in the IVF forums, the answer seems to be: a multitude of positive things. Most prominent ones include: feeling to be members of a tight community, acquiring invaluable medical education, support and hope for the future, as well as genuine emotional support and understanding.
I got understanding, support, and enthusiasm about going on, tremendous information which protects me from missteps. I feel for the results of the girls and feel that I have a big family.
Participation in the forums, however, has also yielded some negative experiences as well, like becoming emotionally affected by the negative IVF results or pregnancy losses of other forum members and feeling that they should perhaps pursue more extended testing or therapy, since other members have done so.
When little babies are lost by mothers who have tried so hard to bring them into the world. It is a horrible feeling.
Despite the negative experiences, however, the overwhelming majority of both the Greek and Dutch women have evaluated their forum participation as something positive, which has helped them through great difficulties and has enriched their lives by providing a significant amount of information, invaluable support and creating real connections with others.
Internet gives you a treasure of information (it is important though that you learn how to filter) and anonymous contacts with fellow ‘sufferers’ is extremely valuable. As far as I am concerned, forums like Freya fulfill an important societal role.
It has offered me many very good friends, since we now meet (offline). I have learned a lot of thing about IVF and medical tests; I have learned to discuss more freely my IVF attempts even with people outside the forum. The forum has made me feel proud for the hard fight that I have been giving and it has helped me many times when I feel weak to find my strength again and get back on my feet.
It appears that the women participating in the IVF forums acquire a full range of experiences and emotions: a plethora of medical information that can help them in making important decisions about their treatment, but can also “overload” them and cause unnecessary worries; a place where they feel understood and can vent their thoughts and frustrations, but can also still experience negative emotions; a bond and connection with the other members that creates such strong empathy that it can cause them to experience deep sadness when other members face a negative outcome. As a forum member mentioned, “it is a society, with all the good and the bad that go with it.”
These findings highlight how online medical communities can play a very important role in providing patients with information, help and emotional support. Their offer of online self-help and social support has been dubbed virtual community care (Burrows et al. 2000); it is a “terminological hybrid derived from the notion of a virtual community in cyberspace and the concept of community care in social policy” (p. 96).
Including Emotional Concerns of IVF Users in Healthcare Ethics Committees
The findings show the emotional impact IVF can have on its users. IVF is not just a medical solution to a biological problem. It is an extremely invasive procedure that is meant to solve a problem that has far-reaching personal, social and existential dimensions, and the procedure itself also has substantial impact on the lives and self-image of women and couples. The emotional concerns of IVF patients point to morally salient aspects of IVF treatments.
Emotions are often dismissed in decision making about medical and other technologies. They are seen as irrational distractions that blur the understanding of objective facts. However, recent emotion research shows that emotions are a source of practical rationality (Damasio 1994). Emotions are appraisals, they show us what we value and draw attention to evaluative aspects of the world (Scherer 1984; Frijda 1987; Lazarus 1991; Solomon 1993; Goldie 2000; Nussbaum 2001; Roberts 2003; Roeser 2011). Medical technologies such as IVF are not neutral tools; rather, they have an impact on the well-being of human beings, for better or worse. They carry risks and benefits with them. Assessing risks and benefits goes beyond measurable medical and technical data, it also involves moral and evaluative aspects (Fischhoff et al. 1981; Krimsky and Golding 1992; Shrader-Frechette 1991; Slovic 2000; Hansson 2004; Asveld and Roeser 2009) to which emotions provide privileged access (Kahan 2008; Roeser 2006, 2010).
The benefits of IVF are obvious, but hard fully to grasp without understanding the emotions of a couple whose wish to have a child is finally fulfilled. Furthermore, the risks of IVF go beyond medical complications. The risks of IVF also concern the impact they have on the psychological and social well-being of women and couples and the people who care for them. Without knowing the emotions of IVF users, it is impossible fully to comprehend the impact that IVF has on people, positively and negatively.
This suggests that it is highly important that the emotional concerns of women and men are taken into account in IVF treatment, health care and policy-making. IVF can be seen as a way to take control over nature and people who would otherwise not have children can possibly have them, which is a tremendous opportunity created by this technology. However, as we have seen, the negative effect of treatments and the emotional and psychological stress can be substantial. In order to make the most of IVF technology, emotions should be taken into consideration and attention should be paid to how such emotions can inform policy and health care. The most difficult part is how to do this in practice. The internet and social media are extremely important ways of expression for people undergoing IVF treatments. It is important to analyze emotional concerns expressed in such media. Of course the anonymity and privacy of the forums should not be threatened, but it should be possible to discern some general concerns that are shared by many IVF patients. The insights presented in this study (and possible follow-up studies) can inform professionals working with IVF patients about the experiences and emotions these patients undergo.
Reading about the happiness of a couple that finally gets a child due to IVF provides for a thorough understanding of the positive value this technology can have. On the other hand, reading about the suffering of women who undergo the strict regimen of IVF leads to compassion and can provide for support by partners, family and friends and to providing more pleasant conditions during the treatment by healthcare providers. It may lead to choosing slightly more expensive but less invasive treatments. Understanding the pain and disappointment of women or couples whose invasive and costly IVF-treatment does not provide them with a pregnancy, or where an IVF-induced pregnancy ends in a miscarriage, can lead to more compassionate care by healthcare providers and family and friends.
The emotions and concerns of the person who is a recipient of care should be taken into account by health care ethics committees. According to Held (2006), care is primarily a relation in which caretaker and cared-for share an interest in their mutual well-being. Held and Noddings (2002) argue that in order for a relation to be labeled care, the caring effort made by the caretaker has to be appreciated and acknowledged as care by the person that is being cared-for. The caring attitude has to be coupled with a concern for what the recipient needs and what she would define as care for her, as an individual. The focus should be on helping women and couples going through IVF to be able to navigate the “obstacle course” (Franklin 1997) of IVF by helping them to keep track of their emotional needs and offering support and a safe environment, especially in the painful moments that follow a failed IVF treatment. One has to particularly take into account the fact that women going through IVF are in a very vulnerable state, emotionally and physically, since they are going through a very demanding medical procedure that might be their only chance to achieve pregnancy and experience motherhood. This requires an understanding and empathetic environment between the IVF health care providers and their patients.
To analyze and include emotional concerns expressed in discussion forums in IVF-related health care could be a way to make IVF health care more compassionate and empathetic towards IVF patients. For example, a great source of disappointment for women going through IVF is the apparent lack of psychological support and guidance offered by the hospital or fertility center during the process of IVF. Despite the obvious usefulness of the forums, face to face contact with a professional psychologist can be considered as a potentially positive and valuable service. It would, therefore, be a prudent move of the health care ethics committee to propose that hospitals and fertility centers employ the services of a licensed psychologist or trained social workers, who will be able to have personal contact with IVF users and individually evaluate their needs.
Another source of uncertainty and frustration is the lack of full explanation of test results and diagnostic procedures, as well as insufficient transparency during the process of IVF from their doctors. Such behavior can cause doubts on the part of the IVF users who were not pleased by their treatment and expected more detailed explanation. Also, quite often the overly optimistic attitude of doctors regarding the positive outcome of an IVF treatment could cause great disappointment and distress to the IVF users after a cycle failure, since the same previously optimistic doctors were not able to offer a satisfying explanation after the failure. It is perhaps useful for the health care ethics committees to point out that doctors should not assume that their patients lack the necessary knowledge to process medical information, nor should they neglect to offer full explanation of the process around IVF, tests performed and IVF failure rates. Being open and honest with their patients will increase the feelings of trust and confidence of the patients and will lead to a better and fruitful cooperation.
Health care ethics committees could also attempt to offer a possible positive improvement of the information offered by the IVF forums by requesting that one or more doctors, specialized in IVF and fertility problems, should participate in IVF and dispense medical advice, which would provide the forum members with medically correct and reliable answers, or could volunteer to certify the correctness of the medical information and articles provided by the forum. The forum could also be divided into two sections, one that is accessible for everyone, including doctors, and one that is only accessible to forum members. For the forums, this could be a step in offering quality medical information, since many of the forum users, although grateful for the variety of medical information, appear to be unsure about the trustworthiness of the source and therefore, do not use the medical information offered in the forums. A certified doctor offering information in IVF forums would improve the trust and willingness of the users to consider the medical information and even incorporate it into their therapy plan. However, it should be noted that such a move could also have a negative impact on the willingness of the women to “expose” their problems and feelings if they feel that they have to “tone down” their frustration and disappointment, especially if they have had negative experiences with doctors in the past. Thus, before deciding to integrate the help of a doctor on an IVF forum, there should be a careful evaluation of the feelings and possible reactions of the forum members to such a possibility.
The emotional impact of infertility can be devastating for women, and even though the use of IVF can assist them in realizing their wish for a child, its strict administration and its physical and psychological impact can cause a new set of problems, not just for the women, but for their partners and social circle. Participating in IVF-centered forums is credited with offering women an enormous amount of information and support, helping them with taking important medical decisions and giving them a safe solace where they can express themselves among fellow IVF patients and feel understood and supported, in a way that perhaps compensates for the lack of support and understanding in their private lives.
These emotional needs and concerns expressed in IVF forums could be instrumentally used by health care ethics committees, in order to promote measures that can aid IVF health care professionals in offering more patient-oriented care and support for women going through IVF. Taking the emotional needs of IVF patients into account can help in creating a more balanced and supporting relationship between IVF users and their physicians, as well as providing them with information and support specifically tailored to their personal needs.
The authors would like to thank the women members of Dutch and Greek IVF forums that kindly agreed to participate in the research by filling out the questionnaires.
Open Access This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.
Sofia Kaliarnta, Phone: +31-0-1527-83956, Email: ln.tfledut@atnrailaK.S.
Jessica Nihlén-Fahlquist, Email: firstname.lastname@example.org.
Sabine Roeser, Phone: +31-0-15-278-8779, Fax: +31-0-15-27-86233, Email: ln.tfledut@reseoR.S.
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