You are on page 1of 45

University Center for International Studies

The University of North Carolina at Chapel Hill

Carolina Papers

International Health
No. 18 (Spring 2004)

A Global Perspective on Infertility: An Under Recognized Public Health Issue


Emily McDonald Evens, MPH Department of Public Health

The University Center for International Studies (UCIS) at the University of North Carolina-Chapel Hill presents the Carolina Papers in International Health. This series of UNC-Chapel Hill masters theses is designed to promote scholarship in the field of international health and to raise awareness of such issues among international studies specialists. The series is interdisciplinary and accepts articles from diverse fields, including Social Sciences, Humanities, Health Affairs, and Law.

If you have any questions or comments about the Carolina Papers, please contact: Dr. Niklaus Steiner University Center for International Studies 223 East Franklin Street, CB # 5145, UNC-CH Chapel Hill, NC 27599-5145 (919) 962-6855 or nsteiner@unc.edu

-2-

A GLOBAL PERSPECTIVE ON INFERTILITY: AN UNDER RECOGNIZED PUBLIC HEALTH ISSUE

Emily McDonald Evens, MPH

A Global Perspective on Infertility: An Under Recognized Public Health Issue


Emily McDonald Evens

Objectives. To provide an overview of the socio-cultural and epidemiological elements of infertility and examine the arguments for considering infertility as an issue of public health significance. Methods. A literature review was conducted using MEDLINE. In addition, a snowball search methodology was employed to find additional resources. Results. The medical condition of infertility exists at the crossroads of personal and societal domains. Individuals and couples suffering from unwanted childlessness experience significant, at times life threatening, consequences. Prevalence is significant and the condition is often linked to preventable infections including HIV and other STIs. Comprehensive reproductive health care, as mandated by human rights documents, often neglects recognition and treatment of infertility. Conclusions. As the serious effects of infertility can largely, be prevented or ameliorated, no matter what resources are available locally; the condition should be considered an issue of public health concern. The discipline of public health could contribute significantly to the development of policy, prevention efforts, and programs in order to alleviate the suffering cause by infertility. Additional advocacy is needed to raise awareness of the causes and consequences of this condition.

-1-

ABBREVIATIONS AND ACRONYMS

ART CDC DBCP DDT HIV/AIDS ICSI ICPD IIME IVF PCBs RTI STI WHO

Assisted reproductive technology Centers for Disease Control 1,2-dibromo-3-chloropropane dichlorodiphenyltrichloroethane Human immunodeficiency virus/ Acquired immune deficiency syndrome Intracytroplasmic sperm injection International Conference on Population and Development International Institute of Medical Education In vitro fertilization Polychlorinated biphenyls Reproductive tract infection Sexually Transmitted Infection World Health Organization

-2-

Infertility is generally viewed as a painful condition for the individuals and couples it affects however, it is usually seen as a private matter to be resolved, resource-permitting, in the medical arena or in the case of adoption, the social work domain. (1) Despite the recent proliferation of studies on reproduction, certain aspects, namely non-normative reproductive scenarios and experiences such as infertility, continue to be overlooked and discussion of infertility as an issue of concern within the field of public health is limited. (2) There are multiple reasons why infertility is overlooked in public health and other social sciences. In their groundbreaking volume Infertility Around the Globe: New Thinking on Childlessness, Gender, and Reproductive Technologies van Balen and Inhorn put forth several rationales for the general neglect of infertility. (2) First, they argue, infertility is most often cast as an individual medical condition as opposed to a social problem deserving of social analysis. Additionally, research is made difficult because reproductive failure, especially male failure, is a taboo subject cloaked in stigma and often not publicly disclosed. The feminist revolution of the 1960's and 70's also contributed to the neglect of infertility as a societal level concern because motherhood, as an essential component of women's lives, was called into question for the first time. Research on childlessness became a thorny issue post-feminist revolution because, in the West at least, childlessness could be either a voluntary or involuntary condition. (2) Finally, the lack of discourse on infertility reflects a certain neo-Malthusian element to the discourse of Western population policy makers who, fixated with curbing "high" fertility in the non-Western world, fail to regard its correlate, infertility, as a significant priority. (3) Ironically people in non-Western settings are generally more often and more severely affected by the ravages of infertility due to higher prevalence rates and pronatalist social norms. (2)

-3-

When the issue of infertility is raised it is often in the context of miraculous new reproductive technologies or philosophical critiques of these technologies; the actual lived experience of infertility for individuals and couples, especially those in the non-Western world, is sorely neglected. (1, 2) Not incidentally, the highly touted and much debated reproductive technologies are out of reach for the vast majority of those affected by infertility today. Medical, bioethical and psychological research has identified infertility treatment as an issue for exploration however; the biological and social causes and consequences of infertility have too long been overlooked as topics deserving research attention within the field of public health. Despite the dearth of previous research there are significant reasons to establish infertility as a public as well as a personal health concern. This paper provides an introduction to the sociocultural and epidemiological elements of infertility, including the condition's prevalence, causes, consequences and treatments. Arguments for and against considering infertility as a public health issue are reviewed with the goal of proving the need for widespread recognition of the public import of infertility. SEARCH STRATEGY AND SELECTION CRITERIA Articles for this review were gathered using MEDLINE searches for "infertility" and "infertility AND public health". Articles referring exclusively to medical treatments for infertility were eliminated. A snowball search was also employed, with references from useful articles mined for additional resources. Dr. Lewis Margolis, Associate Professor in the Maternal and Child Health Department at UNC-Chapel Hill provided several key documents for this paper and Lori Delaney, resource center manager for IntraHealth International, a non-profit international health organization, was instrumental in locating additional resources.

-4-

INTRODUCTION TO THE ISSUE OF INFERTILITY: DEFINITIONS OF INFERTILITY Infertility is a disease of the reproductive system which affects both men and women with almost equal frequency. (4) It is a global phenomenon with some portion of every human population affected. It is estimated that an average of 10% of the global reproductive-age population is unable to get pregnant or carry a pregnancy to term. (1, 2, 4) While there is no universal definition of infertility, a couple is generally considered clinically infertile when pregnancy has not occurred after at least twelve months of regular sexual activity without the use of contraceptives. (5) Primary infertility is defined as childlessness and secondary infertility as the inability to have an additional live birth for a parous woman. Although women's infertility is of greater research consideration, health care attention and social blame, male conditions cause or contribute to around half of all cases of infertility. (6) It is estimated that approximately one-third of cases of infertility are due to male factors, onethird to female, and the remaining third to a combination of both male and female factors. In approximately 20% of cases, the origin of the condition is never identified and the cause is labeled as unexplained. (7) It is important to remember that the definition of infertility varies between cultures and that the Western, clinical definition cited above may not capture variation in cultural perceptions on childlessness. Infertility often does not strictly mean the inability to give birth to a child; in some places the inability to have the number of children that cultural norms dictate maybe considered involuntary childlessness; in other places infertility may be understood as having no sons, or not becoming pregnant soon after initiating sexual activity. (2, 8) Social norms concerning marriage, divorce, and family organization influence perceptions of childlessness to a large degree. In parts of Tanzania and other east and southern African countries, a woman who

-5-

has had one or more children can be considered childless because children remain with their father in the case of divorce and every marriage is expected produce children. (9) PREVALENCE Infertility affects between 60 million and 168 million people worldwide; generally one in ten couples experience primary or secondary infertility. (3, 10, 11) The majority of those who suffer live in the developing world. (3, 10) Universally, the prevalence rises significantly (among women with no children) with a woman's age. (1) Worldwide rates of infertility vary dramatically corresponding to the incidence of preventable conditions leading to infertility--from a core prevalence of about 5% to rates as high the mid-30's in sub-Saharan Africa. (6, 10) Rates of primary infertility are generally between 1% and 8% with rates of secondary infertility reaching as high as 35%. (3) The "Infertility Belt" stretching across central and southern Africa has the world's highest rates of infertility. (2, 12) There are multiple difficulties inherent in assessing the occurrence of infertility. First, assessment and measurement is complicated by the fact that the condition is generally experienced by a couple, not an individual. There is also a social bias to identifying infertility; usually the desire or opportunity for pregnancy is required to be considered as infertile. Finally, no objective test or universally accepted definition for the condition exists. There is general consensus that rates of infertility are underestimates because of difficulty in measuring prevalence, potentially flawed methods for measurement, and cultural biases which create hidden categories of the condition. (6) CAUSES OF INFERTILITY Infertility has a wide range of causes stemming from three general sources: physiological dysfunctions, preventable causes, and unexplained issues. Anatomical, genetic, endocrinological

-6-

and immunological problems can all cause or contribute to infertility. (6) Physiological causes of female infertility include: tubal blockage, abnormal ovulation, congenital malformation, and endometriosis. (4) Male factors include issues with sperm counts, motility, and quality; and ejaculatory dysfunctions. Unexplained factors can emanate from the male or female. In addition to the core prevalence of infertility due to physiological conditions, additional cases are caused by the incidence of preventable conditions such as infection, "lifestyle factors", advancing maternal age, and environmental and occupational hazards. (6) Most primary and secondary infertility in developing countries is attributable to infectious disease and subsequent damage or blockage of the fallopian tubes. (3) Tubal blockage is responsible for up to two-thirds of infertility in nulliparous women in sub-Saharan Africa, up to one-third of the infertility in other parts of the developing world and up to one-quarter in the developed world. (10) Infection-related infertility can be caused by undiagnosed or poorly treated genital tract infections, sexually transmitted infections (STIs), or postpartum or postabortion infection. Infectious and parasitic diseases such as pelvic tuberculosis, schistosomiasis or malaria can also cause infertility. (5, 10, 12) Finally, infection resulting from genital scarification or cutting can also cause infertility. (8) The most common preventable causes of infertility are sexually transmitted infections, especially chlamydia and gonorrhea. (1, 11, 12) Undiagnosed or inadequately treated chlamydia and gonorrhea in women can lead to pelvic inflammatory disease (PID) which can lead to infertility. In men, chronic chlamydial genital infection can also possibly lead to infertility. (13) It is estimated that 40% of women in developed countries with inadequately treated chlamydia develop PID with 20% of those becoming infertile due to tubal scarring. These rates could be higher in developing countries. (1)

-7-

The potential for chlamydia and gonorrhea to contribute to infertility rates is startling when the incidence and prevalence of these STIs is considered. Worldwide there are an estimated 62 million cases of gonorrhea and 92 million cases of genital chlamydia every year. (5) These are among the most easily transmitted STIs with one in every two acts of unprotected intercourse with an infected partner resulting in gonorrhea transmission and one in five acts of unprotected intercourse with an infected partner resulting in transmission of chlamydia. (5) While prevalence of chlamydial infection is estimated between 2% and 27% of sexually active females, the true prevalence of chlamydia is unknown and almost surely underreported because the infection is asymptomatic in half of infected men and three-quarters of women. (1, 13) On a population scale these STIs could have a large impact on fertility; Swinton et al. estimate that a 20% incidence of untreated gonorrhea in sexually active adults may reduce population growth as much as 50% due to infection-caused infertility. (6) Fortunately, screening can identify these two diseases and both can successfully be treated. (5) Other preventable causes of infertility include "lifestyle factors", a diverse group of issues such as obesity, weight gain and loss, eating disorders, malnutrition, excessive exercise, and use of nicotine, alcohol or caffeine. While these factors are important, their effects on infertility are considerably less than those of infection. (1, 5) An increasingly common cause of infertility in the developed world is advancing maternal age. As maternal age increases egg quality and ovulatory function diminish while risk of reproductive disorders such as endometriosis increases. (1) As women delay childbearing in favor of pursuing education and vocation opportunities they face potentially increased difficulty in becoming pregnant.

-8-

Environmental and occupational hazards constitute another cause of infertility. The link between these hazards and decreased fertility is not always clearly established and is difficult to measure however, there are more than 50 chemicals found in the workplace and environment which are known to be associated with adverse reproductive outcomes in men and women. (1) Additionally, there is a significant possibility for additional negative chemical-related harms; only a small number of the 60,000 chemicals and 4 million chemical mixtures in commercial use today have been tested for reproductive effects. (1, 5) Several occupations are associated with significantly higher rates of infertility and exposure to chemicals such as nitrous oxide, glycol ethers, organic solvents, soil fumigants, 1,2-dibromo-3-chloropropane (DBCP), pesticides, arsenic, aflatoxins and endocrine disruptors such as dichlorodiphenyltrichloroethane (DDT), polychlorinated biphenyls (PCBs), and dioxins are all associated with higher than average rates of infertility. (1, 5) Environmental exposure to reproductive toxicants may affect significantly greater numbers of people than toxicants encountered in specific occupational settings as individuals may come into contact with chemicals in a variety of ways including: direct exposure, industrial emissions, pesticides and their residues, ingested foods, or contaminated water. (1) The causes of infertility discussed above are rooted in the Western, bio-medical paradigm and it is important to understand that infertility is understood differently in each sociocultural context in which it is experienced. Traditional knowledge in Anglophone Africa acknowledges both male and female causes of infertility, however in patriarchal societies men are protected and women almost always blamed for involuntary childlessness. (8, 9) In Tanzania, for example, medical treatment for infertility is often delayed or precluded in favor of traditional and religious treatments because evil forces are often thought to be the of cause infertility. (14) In Latin

-9-

America, strong social stigma attached to infertility and machismo attitudes create a dynamic where women blame themselves for infertility. (15) In the Far East, Confucian texts recognize three elements that control reproduction, a male component, a female, and an element which comes from both male and female. Infertility however is usually blamed on women and often seen as retribution for past wrong doing either on the part of the man, woman or one's ancestors. (16) When attempting to explore infertility from a social science perspective it is vital to investigate local perceptions in order to capture a culturally relevant understanding of infertility. While there are some global similarities in perceptions regarding infertility, such as the pervasive notion that women are usually to blame for unwanted childlessness, there is also variation in perceived causation and significance. (2) CONSEQUENCES OF INFERTILITY Infertility interferes with one of the most fundamental and highly prized human activities and thus presents a major life challenge to those who desire children. (1) The condition brings up issues related to the health and well-being of individuals, couples and society as a whole. Infertility almost always leads to decreased levels of personal well-being and for many individuals it causes significantly more severe consequences. (1) The burden of infertility includes psychological, social and physical suffering. Documented consequences include: anxiety, depression, lowered life satisfaction, frustration, grief, fear, guilt, helplessness, reduced job performance, marital duress, dissolution and abandonment; economic hardship, loss of social status, social stigma, social isolation and alienation, community ostracism, physical violence and where treatment is available uncomfortable, painful or life-threatening medical interventions. (1, 2, 6, 10) In most areas of the world women's well-being appears to be more seriously affected by infertility than men's.

- 10 -

The nature and severity of the consequences of infertility differs between developing and developed countries and although effects vary depending on multiple factors, the consequences appear greater in the developing world. (2) In general few health conditions affect a person's well-being more profoundly or pervasively than infertility in developing countries where the private agony of infertility is transformed into a harsh public stigma with devastating consequences. (6) The reasons why infertility may be difficult for individuals and couples to accept vary. To understand the consequences of infertility both the reasons why children are desired and the importance of having children must be examined. In the West, having children is widely viewed as a choice to be weighed carefully with other life goals. Personal happiness and the possibility of giving and receiving love within the parent-child relationship play into the decision of having a child. Because of widely held beliefs in individualism, free choice, and control over one's life, unwanted childlessness causes frustration for Western couples that may not be experienced in the same way in other societies. (2) In other locations, personal happiness is no less important, but not having children is seldom viewed as an option. Adherence to social norms, desire and need for social security, power and perpetuity are oft-cited reasons for having a family in developing countries. In countries with no social security system, many families depend on children for economic survival and childless couples risk severe economic deprivation and social isolation without children to assist them in old age. (6) Women's bodies, especially in developing countries, are frequently the locus through which social, economic, and political power is exercised. Where the role or status of women is defined by their reproductive capacity, as when womanhood is defined by motherhood, infertility can have significant social repercussions including unstable marriages, domestic violence,

- 11 -

stigmatization and in severe cases, ostracism. (10) Infertile women in developing countries may suffer life-threatening physical or psychological violence when having children is a woman's only chance to improve her status in her society or family. (6) Examples of the effects of infertility in several developing countries are explored below. The effects of involuntary childlessness vary by location. In Asia, being childless has more negative social, cultural, and emotional repercussions for women than perhaps any other condition which is not immediately life threatening. A study in Andhra Pradesh, India reported that 70% of women experiencing infertility would be punished with physical violence for their "failure" and nearly 20% of these women reported that they suffered severe violence at the hands of their husbands as a result of being childless. (6) Some Indian women have reported not being allowed to hold new-born relatives or participate in infant naming ceremonies because of superstitious fears that a new child will die in the arms of an infertile woman. In Andhra Pradesh infertile women reported feeling isolated and ashamed with actual and anticipated rude comments at social functions forcing some women into social reclusion. (12) Children are highly valued in Francophone Africa with procreation considered the main purpose of marriage and polygamous marriage justified as a means to increase family size. A marriage without children is equivalent to no marriage at all, and childlessness remains the main cause of divorce. The inability to have as many children as desired is considered a curse and difficulty conceiving or fathering a child is one of the most common reasons for seeking both traditional and modern health care. (17) In China and other populations with Confucian traditions, infertility is seen to disturb not only this life, but the extended life of a couple's ancestors. Filial piety is an essential ethical principle which requires people to extend the life of their ancestors and make their family line

- 12 -

run continuously from generation to generation through the production of children. A person is understood to exist only though interdependent relationships with their family and community; having no children breaks this chain and negatively affects the infertile couple as well as their ancestors and community. (16) In pronatalist Confucian societies infertile individuals who maintain cultural traditions suffer significant psychological pressure and social stigma. (16) A study of female infertility in Tanzania found that women experience many grave hardships and serious social consequences as a result of infertility. In this setting marriage is considered an exchange of productive and reproductive capacities between a woman and her husband's family. The main aim of marriage is reproduction and an infertile woman is considered a "loss" in both reproductive and economic terms. Both men and women greatly desire children and no one chooses a life without them. A large family is needed because infant mortality is high and life spans are limited due to lack of health care. Children also provide economically for their parents in old age and improve their parent's status in the domestic hierarchy. Consequences of infertility in this setting include diminished identity and status, stigmatization, and even ostracization. Infertility can engender spousal neglect and a withdrawal of economic support; it almost always signals the end of marriage through divorce or abandonment. If the marriage is not ended a husband will often take an additional wife in the hopes of proving his fertility and producing children. Other consequences include unpleasant or dangerous traditional remedies undertaken in the hopes of curing infertility such as eating feces and inducing vomiting. (9) Infertility engenders harsh consequences on personal and social levels with women often receiving the blamed for a couple's inability to have children. The consequences of involuntary childlessness on men are regrettably understudied however. Additional research is needed to provide an in-depth understanding of the social and cultural effects of infertility. (9)

- 13 -

TREATMENT FOR INFERTILITLY As a considerable portion of infertility is due to preventable causes, primary prevention is an important and cost-effective component to combating unwanted childlessness. Many governments and public health care providers consider prevention a priority and a 1988 report by the US Office of Technology Assessment concluded that "With the personal, familial, and societal losses caused by infertility so great it is clear that infertility is better prevented than treated." (1, 3) Similarly, a recent unpublished World Health Organization (WHO) Reproductive Health and Research Department strategy document listed prevention and treatment of infertility as important elements of sexual and reproductive health. (18) Prevention is especially vital in developing countries where the majority of cases are due to infections resulting from STIs, unsafe delivery or unsafe abortion. (10) In areas where a large percentage of infertility is the result of infection the situation would be best addressed through prevention and treatment of infection, in combination with basic health education to provide information on sexual and reproductive health and fertility awareness. These messages could be incorporated into existing family planning and reproductive health programs within primary and secondary health care services. Despite the key role of prevention, not all cases of infertility can be avoided, and the need for treatment clearly exists. (6) A range of medical treatment options exist for infertility, which fall into two broad categories. Low tech treatments, which account for more than 95% of modern, medical infertility treatments, are those that do not involve the retrieval of oocytes or fertilization outside the body. These often include the use of fertility drugs to stimulate "superovulation", the development and release of more than one egg per ovulatory cycle, and intrauterine insemination, a process by which sperm are placed inside a woman's cervix to facilitate fertilization and pregnancy. (1)

- 14 -

High-tech treatments, also called assisted reproductive technologies (ARTs), are treatments or procedures that involve the handling of human eggs or sperm for the purpose of helping a woman become pregnant. Common ARTs include in vitro fertilization (IVF) a procedure in which a man's sperm and a woman's egg are fertilized in a laboratory and the resulting embryo is transferred into a woman's uterus, and intracytroplasmic sperm injection (ICSI) in which a single sperm is injected into a single egg during IVF. (1, 5) The success rates for ARTs vary according to multiple factors including: patient age, diagnosis, length of infertility, number of previous IVF attempts, and the size and quality of the facility where treatment is being provided. (1) The American Society of Reproductive Medicine estimates that more than one half of couples in the United States pursuing treatment eventually become pregnant, however success rates vary greatly both within the United States and abroad. (4) Since the birth of the first human baby resulting from IVF in 1978, there have been over one million babies born as a result of ARTs with Europe leading the world in terms of number of treatments; in some European countries up to 5% of all births are due to ARTs. (10, 19) Medical treatment of infertility has advanced dramatically, making parenthood possible for many who would have until recently been unable to achieve this goal. Despite the potential of ARTs, there is considerable debate over the cost and accessibility of infertility treatment. In the United States one cycle of IVF costs an average of $12,400 and comes with an average success rate of less than thirty percent--29.4% of women deliver for every egg retrieval performed. (20) Success rates generally increase with the number of ART cycles attempted, up to 4 cycles. (20) While IVF itself is used with less than 5% of infertile couples who seek treatment, amounting to only 0.003% of health care costs in the United States, other treatments can also be expensive with public funding and insurance coverage varying widely

- 15 -

worldwide. (7, 20) In the United States, treatment is usually not covered by private insurance and never included in public insurance schemes. Other developed countries generally provide some funding for treatment within the context of a socialized medical system. Most women experiencing infertility however do not seek medical help. In the United States those who do seek specialized services for infertility are more likely to be white and of higher socioeconomic status than those who do not seek treatment despite the fact that the prevalence of infertility does not vary by race/ethnicity or socioeconomic status. (1) When modern medical treatment for infertility is available it carries its own risks. In addition to the risks inherent in any invasive medical procedure, superovulatory fertility drugs can cause ovarian hyper-stimulation syndrome, a condition marked by enlargement of the ovaries which can, in severe cases, be life threatening. Another potential risk for women who have undergone ART using ovarian stimulation medications is an increased risk of ovarian cancer; this is controversial however and substantial disagreement exists over the causation of these cancer cases. (1) The most commonly discussed risk of infertility treatment concerns only those whose treatment is successful, the increased risk of multiple births. In 1996 38% of ART births in the United States were multiples, compared to just 2.7% of the general population. (1) For a couple who has undergone infertility treatment multiple births may seem like a thrilling conclusion to a difficult process however, multiple births bring significant risks. Multiple births have higher rates of neonatal complications such as prematurity, low birth weight, congenital anomalies, respiratory distress syndrome, and infant mortality. For higher order multiples, rates of infant mortality are up to 15 times higher than singleton births. (1) Mothers of multiples also suffer increased complications including hypertension, anemia, post-partum hemorrhage, and increased

- 16 -

rates of depression. Multiple births exact additional familial costs such as extreme sleep deprivation, increased anxiety, depression, financial strain, and lack of parent-child time. In addition to effects on the infants, mothers, and families of multiples there are significant additional delivery and care costs for health care systems. (1) Treatment in the Developing World Global demand for ARTs is undeniable however; the cost and difficulty of providing such interventions are highly debated. (5) The high price of fertility treatments in the developing world means that these treatments are available only for a small minority of those who need and want them. (17) Currently ARTs and expanded reproductive health care services targeting infertile couples are extremely limited in all developing nations. Furthermore, because infertility treatment is often synonymous with expensive and controversial ARTs it is unlikely that these services will become a public health priority for developing country governments or international health aid organizations. (3, 6) Despite these challenges, many developing countries have seen the introduction of new reproductive technologies through a global transfer of technology. (2) The WHO has recently received several requests for advice on the introduction of ARTs into resource-poor settings and the number of ART clinics in developing countries is rising. Additionally, infertility consumer groups are now established in several of these countries. (10) By 2001 there were eight clinics offering ARTs in sub-Saharan Africa (located in Nigeria, Senegal, Zimbabwe, Cameroon, Togo, and Ghana) and many others offering artificial insemination. African examples demonstrate that ARTs are feasible and can be successful in low-resource settings where staff are trained and equipment is available. (5, 8, 11) The great social focus on family and children in Africa means that ARTs could not fail to generate interest and excitement. In almost all areas of the developing

- 17 -

world, ART treatments, when available, will be eagerly sought despite negative physical, social, or financial consequences, because of infertile couple's hopes for of having a child. Conversely, because treatment success rates are low and a majority of patients do not achieve a viable pregnancy, it is important to acknowledge that the Western standard of care may not be a worthy goal. New reproductive technologies are not a panacea for treatment of infertility; low "take-home baby rates" can be a cruel and expensive chimera for infertile couples. Extensive media coverage of new infertility treatments has the negative side effect producing a unrealistic expectations of new technologies. Western physicians often encourage women to take physical, emotional, and financial risks through repeated use of expensive and often unsuccessful reproductive technologies. The focus on high-tech treatment should not come at the expense of failure to acknowledge the importance of prevention, lower tech solutions, waiting, advocating for adoption or fostering, or the cessation of treatment and the acceptance of infertility. (2) In some parts of the world, infertile couples treat their childlessness with assistance from their social network instead of technology. (17) Alternative routes to parenthood exist in many cultures. In Anglophone Africa many ethnic groups treat male infertility through surrogate fatherhood whereby a woman whose husband is considered infertile is given permission by her husband's family to have intercourse with her husband's brother or another close relation in attempt to become pregnant. The matter is not discussed openly but any resulting child is raised by the woman and her infertile husband as their child. (8) This process is similar to the modern medical treatment for infertility known as donor insemination where a sperm from a person besides a woman's husband or partner is placed inside a women's cervix in attempts to achieve pregnancy. In some African cultures an infertile woman "marries" a younger wife to bear children for her husband when she is unable to. This is still practiced by the Ibos and Edos of

- 18 -

Nigeria. The younger wife is often a relation, sometimes a cousin or sister, of the older infertile wife and the wives often live together with the husband and children. It is also possible that the younger wife lives separately while her children are brought up as the children of the older wife and the husband. (8) Among these groups approaches to parenthood are fairly versatile and an interesting interplay of modern and traditional concepts is used to solve problems posed by infertility. While not a treatment for infertility per se, adoption or fostering is often recommended as a solution to involuntary childlessness. The degree to which this is culturally and individually acceptable varies. Studies show a widespread lack of adoptable children and social customs that resist both giving up and taking in children. (6) Despite these barriers, with better information and counseling, adoption is being used increasingly in developing countries. (14) Formal adoption is an expensive option for resolving childlessness however, often significantly more expensive than treatment. As with medical therapies, most adoption expenses are paid out-ofpocket by the adopting individual or couple. When considering adoption or fostering as a solution to infertility it is important to remember that conditions that cause infertility can have other negative health effects as well. Therefore, treatment may be necessary in some cases and should be explored. In conclusion, many treatments for infertility exist but the degree to which they are available and acceptable to infertile couples varies considerably by geographic location and access to resources. Even with unlimited resources, not all infertile couples can be successfully treated. Prevention and socially-controlled options such as adoption or acceptance of childlessness are other important means to resolving the devastating consequences of involuntary

- 19 -

childlessness. There is much work to be done in order to make treatment more accessible to those in need and the burdens of infertility less for all who struggle with them. WHAT DEFINES A PUBLIC HEALTH ISSUE? In order to determine whether infertility should be considered a public health issue, it is important to briefly examine the field of public health and the criteria used for defining a public health issue. Understanding public health begins with the concept of health itself. The WHO describes health as "A state of complete physical, mental and social well-being and not merely the absence of disease or infirmity" (21). Health should be seen as having value to the extent that it makes possible a satisfactory total living experience, considering both the quality and quantity of life as important. (22) Assurance of health is seen as a governmental responsibility to some degree in almost every country and the human rights framework has successfully been used as a tool to protect and promote health. Definitions of public health tend to be broad and inclusive in scope. The International Institute of Medical Education (IIME) defines public health as the "Organized efforts of society to protect, promote, and restore people's health." (23) The IIME maintains that while public health activities change with variations in technology and social values, the goals remain the same: to reduce the amount of disease, premature death, and disease-produced discomfort and disability in the population. This population focus may leave some individual needs unaddressed. In general, public health is concerned with four broad areas: (1) lifestyle and behavior, (2) environment, (3) human biology and (4) organization of health programs and systems. The field of public health, however, is not just a medical, sociological, and environmental enterprise; Pickett and Hanlon write that "Public health must really be regarded as an ethical enterprise, an

- 20 -

agent of social change, not just for the sake of change but to make possible the achievement of other social goals." (22) Historically public health has been a progressive discipline; it developed through concern for sanitation issues, then turned to questions of communicable disease; prevention of physical and mental ailments in the individual was added next, then promotive social and behavioral aspects of health and recently, public health has turned its attentions to the dilemma of the distribution, quality, and assurance of comprehensive health care for all. (22) The current public health paradigm emphasizes an individual's relationship with their complex social and physical environment. The gradual extension of the horizons of public health is in conformance with advances in medical and scientific knowledge as well as social and political progress. (22) A quote from Mountin in 1952 aptly illustrates the benefits of the expansion of public health boundaries: "The progressive nature of public health makes any restricted definition of the functions and responsibilities of health...difficult. To tie public health to the concepts that answered our needs 50 years ago, or even a decade ago, can only hamstring our contribution to society in the future." (22) The cost of public health programs relative to produced benefits is the subject of much attention and public discussion. Financial policy must balance program costs as well as humanitarian and social gains, economic advantages, and the value of lives made possible or continued by public endeavors. (22) Cost/benefit considerations are valuable in obtaining public understanding and support for budget decisions concerning health programs. The governmentpublic health partnership often grapples with the difficulty of attaching value to a health outcome

- 21 -

which is prevented and struggles to justify expenses for lessening suffering which may not be easily visible to the individuals who make the budgetary allocations. WHY INFERTILITY SHOULD BE CONSIDERED A PUBLIC HEALTH ISSUE I would now like to examine reasons for including infertility as an issue of public health concern. It is important to again emphasize that childlessness is only problematic when it is undesired; many people freely choose to not have children. While those who voluntarily do not have children are often regarded as atypical, parenthood should be an individual choice, made privately, free from coercion. My arguments therefore pertain to those who desire to have children, but are biologically unable to do so, not to those who choose not to have a family. In light of the prevalence, causes and consequences of infertility, a significant case for naming the condition as a public health issue can be made. While the population-level focus of public health suggests that issues which affect only a limited number of individuals would not likely be considered public health concerns, infertility is common, with an average of one in ten couples of reproductive age experiencing difficulty in becoming pregnant and a portion of every population on the globe affected. (1, 2, 4) Furthermore, the high prevalence is actually an underestimate, with the real percentage of the population affected likely to be greater. Public health concerns itself with the protection, promotion and restoration of the people's health (23); if a health condition can not be prevented or treated, the role of public health in dealing with it is limited. While there is a core prevalence of infertility which unfortunately can not be prevented; the majority of cases in the developing world and a portion of the cases in the developed world are due to preventable causes. The field of public health therefore has a role to play in educating the public and preventing infertility caused by preventable factors such as infection, environmental and occupational toxicant exposure, and

- 22 -

human behaviors. Additionally, many cases of infertility can be successfully treated, and other means to resolving infertility also exist. The consequences of infertility vary dramatically depending on many factors. At the very minimum, unwanted infertility causes decreased levels of well-being, with more severe social, economic, and health consequences extremely common in the developing world. (1) The negative physical, emotional, and psychological health effects may not be easily seen or widely known, however they are widespread. The failure to recognize infertility as an issue with severe negative health effects exacerbates the pain of affected individuals and couples. Infertility is a complex disease and difficulties arise in preventing, diagnosing, and treating it. However, the large numbers of people affected, the devastating consequences, and the ability to prevent or treat its effects are strong arguments for naming infertility as a public health issue. Other arguments for recognizing unwanted childlessness as an issue of public concern include: the dual personal and social nature of infertility, the unique relationship between infertility and HIV/AIDS, the potential to improve the suffering caused by infertility with public health tools, and human rights demands to provide comprehensive reproductive health care. These arguments are explored below. PUBLIC HEALTH: THE INTERSECTION OF PERSON AND SOCIETY Infertility is both an individual and social condition. An individual suffering from unwanted childlessness suffers from an ailing body, an unfulfilled human identity, and disrupted relationships with direct social, political and economic impact. (6) Lack of acknowledgement of infertility as a social concern confines the condition to the realm of private, usually feminine, suffering. These attitudes, as well as pervasive vertical approaches to family planning provision and STI management ultimately disconnect the goals of reproductive health care, with infertility

- 23 -

services inevitable falling behind. (6) The effects of infertility leave no doubt as to its harms. Infertility interacts with a complex network of kinship, social relationships, cultural expectations, and societal needs; it is both a medical and social issue. (6) Ultimately, a reduction in the ability to reproduce ourselves imperils the continuation of society. Infertility is failed biological reproduction, but when enough individuals are unable to bear children the reproduction of society is threatened as well. As a health-focused social science, public health highlights the intersection of personal and societal issues. Public health is concerned with the social effects of health issues and infertility affects both the individual and the society in which they live. The current emphasis in public health on an individual's relationship with their complex social and physical environment is an excellent lens through which to investigate the issue of infertility. One of the most disturbing ways in which infertility could have a social effect is a broad decrease in fertility due to environmental pollutants. There is growing concern over environmental toxicants contributing to widespread decrease in fertility, especially a decline in sperm counts. In an analysis of 61 studies published between 1938 and 1990, Carlsen et al. found a significant decline in mean sperm concentration and volume. (1) Although this study suffered from several methodological limitations, a re-analysis of the original data with new methods did find evidence of reduced sperm quality over a fifty year period. Furthermore, the decline was not geographically uniform indicating that further research needs to be done to investigate factors that contribute to differences in fertility. (1) The mere fear of infertility has the power to exact severe societal consequences. In March 2004, the northern Nigerian states of Kanu, Niger, Bauchi and Zamfara suspended a WHO polio immunization campaign targeting 60 million children following reports from Muslim clerics that

- 24 -

the vaccine was contaminated with anti-fertility agents as part of a United States plot to render Muslim women infertile. The WHO denies the claims of these clerics and is seeking an alternative source of vaccines. Meanwhile, polio has radiated out from northern Nigeria and has infected people in at least six other west and central African states. (24) Infertility is a personal health problem; additionally it is linked to unachieved social expectations, interrupted cultural perpetuation, and ultimately, the failure of society to reproduce itself. Fear of infertility is powerful, and there is evidence to suggest that a global reduction in fertility has occurred over the last half a century. As an issue with multiple levels of personal and social significance, infertility is a public health concern. THE INFERTILITY BELT: AN HIV/AIDS-INFERTILITY LINK The intimate connection between HIV/AIDS and infertility is another key reason to consider infertility a public health concern. In the Infertility Belt HIV/AIDS and infertility rates are the highest in the world representing twin threats for depopulating central and southern Africa. (2, 9) This connection has recently brought infertility to the attention of international health policy makers. HIV/AIDS is a risk factor for infertility and these two devastating conditions are linked in a complex web of sexual and reproductive harm. (9) In a quest for pregnancy, infertile women are more likely to engage in unprotected sexual intercourse; this behavior places them at increased risk of HIV. In parts of Africa infertile women are 2.5 times more likely than pregnant women to be HIV positive. (2, 9) Unprotected intercourse also increases the risk of acquiring other STIs, which can facilitate HIV infection and increase a woman's risk of becoming infertile. (9) Infertility and HIV/AIDS are connected in both cause and consequence. Efforts to reduce the rates of HIV infections need to consider the needs and behaviors of infertile women.

- 25 -

HIV and infertility also have interconnected social effects which threaten women's health. A 1999 study in Cote d'Ivoire found that sexual and reproductive behaviors depend more on emotional and relational factors than on health conditions, and social pressures to have children were so great that women were often willing to risk becoming HIV infected themselves, infecting their partners, or giving birth to an HIV-infected child in order to become mothers. (25) The health of an individual or couple and the risk of having an infected infant were often considered less important than the need to meet personal, familial and social obligations to have children. (25) A woman's marital status, and in turn her health, can be effected by infertility and HIV. Many infertile women in sub-Saharan Africa experience multiple marriages and divorces, putting them at increased risk for acquiring HIV or other STIs with each new sexual partner. Infertilityinduced divorce or abandonment can force women into bar work or prostitution where their risk of acquiring HIV is increased. (9) Finally, husbands seeking to prove their fertility can introduce HIV infection to an infertile wife through extramarital sexual relationships. Sexual behaviors and STIs are predictors of both infertility and HIV/AIDS infection in sub-Saharan Africa, and it is recommended that infertility prevention be integrated with HIV/AIDS campaigns. (26) Reproductive and sexual knowledge could be beneficial in preventing both infertility and HIV/AIDS. The linkages between these conditions require that infertility receive attention as a significant public health concern. INFERTILITY AND THE NEED FOR PUBLIC HEALTH TOOLS Infertility affects the lives of individuals, couples and families; in addition there are social implications to prevention efforts, use of health resources, and ethical, legal and religious questions raised by infertility. The public health sub-disciplines of epidemiology, environmental

- 26 -

and occupational health, social and behavioral sciences, health services research, health law and ethics, and maternal and child health are already engaged in research and practice concerning several aspects of infertility assessment, prevention, treatment and policy. (1) In addition to the current infertility-related work of public health professionals there is significant need for continued public health efforts in three areas related to infertility and its treatment: data collection and surveillance, public debate on social and ethical issues, and development of health policy. HEALTH DATA COLLECTION AND SURVEILLANCE There is a critical need for the collection and surveillance of infertility-related health data. Knowledge of the etiology, risk factors, and social consequences of infertility is lacking worldwide. Environmental and occupational exposures with harmful reproductive effects merit special examination. Additional data must be collected in order to assess variation in infertility rates by geographic region, understand the predictors of infertility, and design and target interventions. (26) Where infertility treatment is available, the accuracy of common tests used to diagnose the condition and the efficacy of treatment needs to be established. (1) Research on the long-term consequences of ARTs on patients, children and society are also needed. Of special interest is investigation of potentially increased rates of ovarian cancer for women using ARTs and long-term developmental and reproductive effects in ART-conceived children. It is important to determine the costs of not providing treatment such as depression, reduced work productivity and adoption. (1) In the United States there is indication that the growing use of ARTs is affecting the infant mortality rate, a crucial public health indicator. According to the US Centers for Disease Control (CDC), infant mortality climbed in 2002 for the first time in more than four decades.

- 27 -

(27) The CDC attributes this fact in part to the increased usage of ARTs, including fertility drugs, as greater numbers of American women postpone motherhood, use fertility drug treatments, and give birth to multiple infants. Multiple births carry higher rates of premature labor and low birth weight which can put infants' lives at risk. (27) There is a continued need to monitor the effects of infertility and infertility treatments; the discipline of public health is uniquely qualified to carry out this research. PUBLIC DEBATE Inhorn and van Balen maintain that infertility is related to some of the most hotly contested political, bioethical, and moral issues of out time including: disposition of genetic material, "entitlement" to children, payment for expensive, high-tech infertility treatments, and the power of the media to shape reproductive expectations and desires especially when reproductive "miracles" become the focus of media attention. (2) Few areas pose so many social and ethical questions or attract as much public attention as infertility and assisted reproductive technologies. Society needs public dialogue on these new technologies and the issues which they stimulate; public health professionals should be active in informing and initiating these debates. (1) Of particular public interest is gamete donation or "third party reproduction" which presents multiple challenges to the concept of family and parenthood. Oocytes, sperm, embryos, and through gestational surrogacy, wombs can all be donated. The complexities of resulting relationships are staggering given the range and combination of assisted reproductive techniques. Few statutes address parental rights and responsibilities in third party reproduction and society as a whole has a vital interest in debating the many ethical, social and policy issues raised by ARTs. (1) DEVELOPMENT OF HEALTH POLICY

- 28 -

Governmentally mandated health policy has a significant role to play in the recognition and treatment of infertility. The inclusion or exclusion of infertility in national reproductive health guidelines and the decision to publicly fund or mandate private insurance coverage for treatment affects the lives and health of infertile individuals and society as a whole. In 2001, the WHO held a meeting on the medical, ethical, and social aspects of assisted reproduction. A set of recommendations for responsible health policies, clinical practices and research issues was developed, however the multiple issues raised by infertility and its treatment are far from resolved. (10) While ARTs are not easily accessible throughout the world, governments have the responsibility to ensure that public and private services are safe and effective where they are available. The lack of guidelines and regulations for treatment of infertility is a serious drawback to ensuring the safety and efficacy of services as well as improving their quality. (11) In 1992 the federal Fertility Clinic Success Rate and Certification Act was enacted requiring each ART program in the United States to report success rates to the CDC in order to provide the public with information on the effectiveness of services. While the federal government is involved in this much-needed surveillance of high-tech infertility treatment procedures, there is no formal monitoring process or mandated reporting for low-tech treatments. (1) In 1999 the CDC developed a model program for the certification of embryo labs to be carried out voluntarily by interested states. This program included detailed standards on consistent performance of ART procedures, quality assurance and control, maintenance of records and staffing personnel qualifications. (1) However, this certification was voluntary and many important issues were not dealt with. There are currently no federal or state guidelines on informed consent for fertility patients or gamete donors, payment to gamete donors or surrogates,

- 29 -

number of embryos to be transferred to a woman's uterus per ART cycle, treatment eligibility restrictions regarding age, martial status or sexual orientation; or assorted other ethical issues such as the use of donor eggs from human fetuses or sperm harvested from human cadavers. (1) The American Society of Reproductive Medicine has issued guidelines on a range of issues related to assisted reproduction but they do not have the force of regulation. There is little consensus on the type of regulation which would suit the needs of the United States, but there is a growing consensus that some regulation may be necessary given the medical, ethical and social issues involved in the practice of ARTs. (1) Any activity which creates human embryos engenders significant controversy. In order to address this, issues such as embryo storage and the health of children born resulting from the use of ARTs merit pubic discussion and governmental policy. In the United States there has been no federal funding given for embryo research since 1974 therefore, most embryo research is conducted in private clinical settings where the progress is driven largely by competition among clinics to increase their success rates. This research is generally not subject to the scientific rigor and oversight common to federally funded investigations. Hundreds of thousands of embryos are being currently in cryopreservation in the United States without standardized policies regarding how long they can be kept. Potential health risks for children born from these embryos are unknown. Additionally, there are no mandates for informed consent on the use of embryos in case of parental divorce or death. (1) In the developing world the creation of health policy relating to infertility continues at a slow pace. Providers of ARTs in Africa operate in a virtual legal and ethical vacuum. The legal system is far outpaced by developments in reproductive health and a real danger of abuse and unregulated experimentation exists. (17) In Latin America there is conflict between scientific

- 30 -

interests, civil society, and perceived religious restrictions regarding infertility treatments, with a lack of open discussion between society and the church regarding legislation. (15) ARTs are not widely regulated in Latin America, legislation or regulation exists only in Mexico, Brazil, and Argentina and there are frequently no national quality control or clinic licensing systems. (15) This lack of policy, combined with the power of the Catholic Church puts pressures on providers who, in absence of formal regulations, make ethical and treatment decisions on a case-by-case basis. Legislation is not generally sought however, for fear of the enactment of restrictive laws due to the powerful lobby of the Church. (15) Lack of regulation regarding storage and use of embryos in Latin America can also endanger women's health due to a cultural preference to protect any embryos resulting from ARTs at the expense of a woman's health. (15) It could be argued that because public health professionals are presently involved in infertility assessment, prevention, treatment and policy development, infertility is already a public health concern. However, this is not explicitly expressed. Infertile individuals, their families, and society as a whole could benefit from the application of public health skills to additional problems surrounding infertility and its treatment. There is a particular need for the discipline of public health to be involved in the collection and surveillance of health data, generation of informed public debate, and development health policy. COMPREHENSIVE REPRODUCTIVE HEALTH CARE: A HUMAN RIGHTS MANDATE Debate continues over whether treatment for infertility, including new reproductive technologies, should be considered a health right. (2) Use of the human rights framework could assist in alleviating stigma, promoting awareness of infertility, and increasing availability of treatment. This approach has been successful to a modest degree with the issue of female genital cutting.

- 31 -

Support for the recognition and treatment of infertility as a health right comes from several sources. Many infertility consumer groups consider the need to give birth to a health baby a human right based on the United Nation's 1948 Universal Declarations of Human Rights. Article 16.1 of this document states that: "Men and women of full age, without any limitation due to race, nationality or religion have the right to marry and found a family." (emphasis added) (10) The Programme of Action of the 1994 International Conference on Population and Development (ICPD) in Cairo provides more explicit recognition of infertility as a health priority. ICPD signaled a clear shift towards a more broadly defined concept of reproductive health; for the first time neglected "nonfertile" populations such as menopausal women, girls, and the infertile were on the reproductive health agenda. ICPD also marked the first instance where the international reproductive health agenda was developed with input from the populations that international health promotion efforts would target. Infertility and subfertility came to light significant, under recognized, global health issues at this time. (2) The ICPD Programme of Action states that reproductive health care, in the context of primary care, should include prevention and appropriate treatment of infertility. Additionally, it mandates that further diagnosis and treatment for infertility should be available as needed. (28) A final support for infertility as a right came in 1998 when the United States Supreme Court ruled that reproduction is basic civil right. In the case Bragdon vs. Abbot the Court ruled that reproduction is a major life activity and people with physical or mental impairments that substantially limit reproduction qualify under the Americans with Disabilities Act. (1) ICPD also marked the beginning of a movement to provide comprehensive reproductive health care. National policies and international donor organizations are often one sided in their

- 32 -

focus to prevent unwanted pregnancies without emphasis on other kinds of family planning including treating infertility. Serious unacknowledged and unmet need exists for affordable infertility services. (12) Without the expensive technical expertise of full-scale treatment programs, a significant number of infertility cases can be treated in low-resource settings by incorporating limited infertility services into existing family planning and reproductive health care programs. (12) In addition, family planning programs can win trust and enhance use by addressing this sensitive and neglected issue. The Family Planning Association of India in Bhiwandi, India and the Comprehensive Reproductive Health for All Project at the Women's Health and Action Research Center in Benin City, Nigeria are two projects which successfully offer integrated reproductive health care, including infertility treatment, in low resource settings. (12) Multiple low technology services are offered by these projects beginning with education and counseling on fertility awareness and the causes of infertility. These clinics attempt to foster openness towards sexuality issues while divesting their clients of myths and false attitudes regarding infertility. Reorienting community perceptions to involve men in the diagnosis and treatment of infertility is also an important component of comprehensive reproductive health care provision. Treatment begins with a through reproductive history and can include lab tests, semen analysis, and minor pharmacological and surgical therapies including prescription of ovulatory drugs. When needed, these facilities also provide referrals for higher level infertility services, plus counseling, and adoption. Prevention is a special emphasis in low-resources settings; these projects treat infections and offer clean delivery, abortion, and postabortion care in order to reduce fertilitythreatening infection. (12) Results from these two projects demonstrate that even in resource poor settings, clients are willing to pay for infertility services. Existing community gender and

- 33 -

reproductive health education programs can also be a cost-effective method to provide information on the causes and prevention of infertility in order to decrease the conditions harmful effects. (12) When human rights agreements are respected and comprehensive reproductive health care is provided, family planning will be achieved in its fullest sense--helping women and men have the families they desire. Considering infertility treatment separately from reproductive health is ultimately irrational as the goals of comprehensive reproductive health care include the aims of infertility treatment. Reproductive health care can only be enhanced through the inclusion of infertility services. Governments and non-governmental health organizations who subscribe to human rights ideals have an obligation to work towards alleviation of the stigma of infertility through raising awareness and providing treatment. If reproduction is to be considered a human or civil right for everyone, as stated in several human rights documents, then treatment of infertility must be made more available and affordable. ARGUMENTS WHY INFERTILITY SHOULD NOT BE CONSIDERED A PUBLIC HEALTH ISSUE In discussing whether infertility should be considered an issue of public health concern, several arguments in opposition frequently occur. The debate over the public importance of unwanted childlessness is usually made in the context of attempted resolution of infertility either through pursuit of treatment or adoption. The public import of infertility is often contested because of perceived negligible health effects, attitudes towards overpopulation, and concern over the best use of limited health resources. These three arguments are repeatedly voiced in the discussion of infertility as a matter of public concern. The public significance of infertility is often dismissed because of perceived negligible health effects. However, the consequences of infertility vary considerably, from an almost

- 34 -

universal decrease in well-being in infertile individuals, to significant emotional and psychological effects, disruption in social relationships and, at the severe end of the spectrum, death due to domestic violence, suicide or starvation and disease exacerbated by neglect. (6) Direct disease-related sequelae such as untreated infectious or parasitic disease and exposure to toxicants can also seriously threaten the health of infertile individuals. Denying that the emotional and psychological problems resulting from infertility are also health harms is a classic and persistent tactic that results in health care discrimination. (6) Ultimately, the idea that infertility is not a public health care priority because it does not have devastating or life threatening consequences is fallacious--the effects of infertility are unfortunately severe and public recognition of these harms is needed. (6) Another argument made against the consideration of infertility as an issue meriting public attention and funding concerns the pressures of population growth. It is often argued that public resources should not be used to help infertile couples reproduce when the planet is already home to a huge (and growing) population which may not be able to be sustainably supported. The ICPD definition of reproductive health states that individuals should reproduce "if, when and as often as they wish" and human reproduction is widely considered an inalienable right. This right however seems to apply more to some groups than others. Ginsburg and Rapp have coined the term "stratified reproduction" to describe the power relations by which some categories of people are encouraged or empowered to reproduce while others are devalued. (2) Infertile people are in essence not encouraged to reproduce because the costs to society are too great--there are already enough people on the planet to merit the expenditure of resources to allow for more. Attempts to limit the reproduction of fertile couples against their wishes are nevertheless consistently met with protest. If the argument is made that infertility treatment should not be provided because of

- 35 -

the pressures of overpopulation why use medical treatment to save lives? If medical technology is used to prevent suffering of the ailing why should it not be used to alleviate the suffering caused by infertility? (6) The overpopulation argument is also used to encourage infertile couples to adopt children with the rationale that it is better to give a home to an unwanted child than pursue costly infertility treatment. The degree to which adoption is culturally and individually acceptable varies however and, as discussed previously, studies show a general lack of adoptable children and social customs that resist both giving up and taking in children in many places. (6) Denying treatment for infertility is ultimately an ill considered population control measure; assurance of universal education or improved access to contraceptives would be more effective means to reducing population pressures. Whether used against the funding of infertility treatment or in favor of adoption, the overpopulation argument denies the importance of reproductive autonomy and distributes social responsibility for population pressures unfairly on the infertile. (6) Infertility is often denied classification as a public health issue because of concerns over the cost of treatment. Can a right justifiably be denied on the basis of scarcity of economic resources? That very argument has been used to deny the right to education and womens rights. Upon examination, governmental budgets frequently reveal mismanagement of funds or hidden priorities not the inability to finance rights. (6) Creative solutions to infertility treatment should be examined instead of outright rejection of funding for treatment. Where concerns over resources are justifiably significant, attentions should be directed towards prevention and other effective, low-cost solutions to infertility. Inhorn and van Balen ask "Can infertility be considered part of national and international efforts to promote family planning and women's reproductive health? Or is it a "luxury disease",

- 36 -

a waste of valuable resources, given the inability to have children is not (apparently as least) life threatening and may be perceived as mitigating population pressures?" (2) The arguments against considering infertility as a public concern lack a comprehensive understanding of health as well as psychological, economic, political, and moral issues; there are significant reasons why infertility should be considered an issue of public health concern. (6) RECOMMENDATIONS AND CONCLUSIONS Although the challenges brought forth by infertility vary, the condition deserves attention as a critical public health issue. Infertility exists in every society and affects innumerable people. Its consequences are grave but, to a large degree, able to be prevented or ameliorated no matter what resources are locally available. Infertility is a public health issue because, like public health, it is socially constructed, existing at the crossroads of medical and social realms. In parts of the world it is intimately linked with AIDS and STI epidemics, unarguably some of the most pressing health issues of the modern era. The field of public health should contribute its skills to

infertility research, raising awareness of the scope and significance of unwanted childlessness, developing and enforcing public policies on infertility and its treatment, and involving society in the ethical debates raised by involuntary childlessness. Acknowledgement of infertility as a public health issue is necessary for the provision of comprehensive reproductive health services as mandated by human rights documents. These documents specifically discuss health care obligations raised by infertility. As professionals dedicated to the promotion of health, we must adhere to human rights ideals promoted and advocate for their use in order to provide everyone with the highest possible quality of reproductive health care. The provision of infertility services as a human right speaks to the obligation to listen to individual men and women's reproductive needs before determining

- 37 -

reproductive priorities. The need for health care should relate to the cultural realities of specific locations; where infertility is a pervasive and serious concern it should be addressed through health care programs. Public health has traditionally been a radical advocate for social justice. This radical perspective is needed to alleviate the unequal burdens of disease and resource disparities which exacerbate the consequences of infertility. Historically, the field of public health has evolved in collaboration with scientific and social concerns, and as more is known about infertility and its treatment; the condition demands increased public recognition and support. Assurance of health is a public responsibility; despite the difficulty of capturing the suffering caused by infertility, it is a health impairment which must be recognized and addressed. A critical barrier to public protection against ill health is ultimately not technology but a social ethic that unfairly protects the most numerous or the most powerful from the burden of prevention and treatment. (29) Infertility directly affects an often silent minority, however the effects are serious and far reaching for society as a whole. The failure to consider unwanted childlessness a public health issue represents the triumph of market justice model with its emphasis on an individual's ability and (reproductive) capacity and a failure of the public health ethic to promote health and well-being of all. Infertility is a manifestation of disease, not always treatable or preventable but deserving of attention and effort. The suffering experienced by infertile individuals is in fact made greater by the failure to recognize the condition as a concern to the publics well-being. Public health is poised to contribute significantly to the development of health policy, social debate, prevention, and program development in order to alleviate the suffering cause by infertility; it is time to take action by recognizing that infertility is an issue which affects the public's health.

- 38 -

References (1) Fidler A, Bernstein J. Infertility: from a personal to a public health problem. Public Health Rep 1999; 114:494-511. (2) van Balen F, Inhorn M. Interpreting infertility: a view from the social sciences. In: Inhorn M, van Balen F, editors. Infertility around the globe: new thinking on childlessness, gender, and reproductive technologies. London: University of California Press; 2002. p. 3-32. (3) Vayena E, Rowe P. Peterson H. Assisted reproductive technology in developing countries: why should we care? Fertil Steril 2002; 78(1):13-15. (4) American Society of Reproductive Medicine. Patient's fact sheet: infertility. American Society of Reproductive Medicine.org. Dec 1997. http://www.asrm.org/Patients/FactSheets/Infertility-Fact.pdf (26 Feb 2004). (5) Family Health International. Preserving fertility. Network 2003; 23(2): 3-23. (6) Daar A, Merali Z. Infertility and social suffering: the case of ART in developing countries. In: Vayena E, Rowe P, Griffin D, editors. Report of a meeting on "Medical, Ethical, and Social Aspects of Assisted Reproduction; 2001 17-21 Sept; Geneva, Switzerland: WHO; 20021. p. 1621. (7) American Society of Reproductive Medicine. Frequently asked questions about infertility. asrm.org www.asrm.org/Patients/faqs.html1#Q2: (12 Mar 2004). (8) Giwa-Osagie O. Social and ethical aspects of assisted conception in anglophone sub-saharan africa. In: Vayena E, Rowe P, Griffin D, editors. Report of a meeting on "Medical, Ethical, and Social Aspects of Assisted Reproduction; 2001 17-21 Sept; Geneva, Switzerland: WHO; 2001. p. 50-54. (9) Gijsels M, Mgalla Z, Wambura L. 'No child to send': context and consequences of female infertility in northwest tanzania. In: Boerma T, Mgalla A, editors. Women and infertility in subsaharan africa. Amsterdam: Royal Tropical Institute; 2001. p. 203-221. (10) Vayena E, Rowe P, Griffin D, Van Look P, Turmen T. Forward, Current practices and controversaries in assisted reproduction. In: Vayena E, Rowe P, Griffin D, editors. Report of a meeting on "Medical, Ethical, and Social Aspects of Assisted Reproduction; 2001 17-21 Sept; Geneva, Switzerland: WHO; 2002. p. xv-xxi. (11) Butler P. Assisted reproduction in developing countries-facing up to the issues. Progress in Reproductive Health Research 2003; 63:1-8. (12) Datta B, Okonofua F. "What about us?" Bringing infertility into reproductive care. Quality/Calidad/Qualite 2002; 13:1-31.

- 39 -

(13) World Health Organization Department of HIV/AIDS. Global prevalence and incidence of selected curable sexually transmitted diseases. who.int. 2001. http://www.who.int/docstore/hiv/GRSTI/003.htm (13 Mar 2004). (14) Mason E. Infertility treatment versus fertility control: the challenges for developing countries. Eurekalert.org 1 July 2003. http://www.eurekalert.org/pub_releases/2003-07/esfhitv062503.php. (9 July 2003). (15) Luna F. Assisted reproductive technologies in latin america: some ethical and sociocultural issues. In: Vayena E, Rowe P, Griffin D, editors. Report of a meeting on "Medical, Ethical, and Social Aspects of Assisted Reproduction; 2001 17-21 Sept; Geneva, Switzerland: WHO; 2002. p. 31-40. (16) Qui R. Sociocultural dimensions of infertility and assisted reproduction in the far east. In: Vayena E, Rowe P, Griffin D, editors. Report of a meeting on "Medical, Ethical, and Social Aspects of Assisted Reproduction; 2001 17-21 Sept; Geneva, Switzerland: WHO; 2002. p. 7580. (17) Tangwa G. ART and african sociocultural practices: worldview, belief and value systems with particular reference to francophone africa. In: Vayena E, Rowe P, Griffin D, editors. Report of a meeting on "Medical, Ethical, and Social Aspects of Assisted Reproduction; 2001 17-21 Sept; Geneva, Switzerland: WHO; 2002. p. 55-59. (18) Askew I, Berer M. The contribution of sexual and reproductive health services to the fight against HIV/AIDS: a review. Reproductive Health Matters 2003; 11(22):51-73. (19) Willson M, Mason E. ART (assisted reproductive technology) fact sheet. OBGYN.net Nov. 2001. http://www.obgyn.net/displayarticle.asp?page=/news/eshre_factsheet (22 July 2003). (20) American Society of Reproductive Medicine. Patient's fact sheet: In Vitro Fertilization (IVF). American society of reproductive medicine.org. Jan 1998. http://www.asrm.org/Patients/FactSheets/invitro.html. (26 Feb 2004). (21) WHO definition of health. who.int. http://www.who.int/about/definition/en/. (29 February 2004) (22) Pickett G, Hanlon J. Philosophy and purpose of public health. In: Public Health Administration and Practice. 9th Edition. St. Louis: Times Mirror/Mosby College Publishing; 1990. p. 3-20. (23) Glossary of medical education terms. International Institute of Medical Education.org. Feb 2002. http://www.iime.org/glossary/htm#P (24 Feb 2004). (24) BBC News. Nigeria seeks asia polio vaccines. BBC News World Edition. 2004 Mar 9. http://news.bbc.co.uk/2/hi/africa/3546877.stm. (11 Mar 2004).

- 40 -

(25) Aka-Dago-Akribi H, Desgrees Du Lou A, Msellati P, Dossou R, Welffens-Ekra C. Issues surrounding reproductive choice for women living with HIV in abidjan, cote d'ivoire. Reproductive Health Matters 1999; 7(13): 20-29. (26) Larson U. Primary and secondary infertility in tanzania. J Health Popul Dev Coun July 02, 2003; 2-15. (27) Yee, D. Infant death rate jumped in 2002. The News and Observer 2004 Feb 12. (28) ICPD Programme of Action. Asia Pacific Alliance.org 7 Nov. 2001. http://icpd.eastwestcenter.org/poa_7.asp (7 Jan 2003). (29) Beauchamp D. Public health as social justice. Inquiry 1976; 8(1):3-14.

- 41 -

ACKNOWLEDGMENTS Lori Delaney, resource center manager for IntraHealth International, was instrumental in locating resources for this paper. Dr. Lewis Margolis, Associate Professor in the Maternal and Child Health Department at UNCChapel Hill, was helpful in providing resources concerning the definition of public health issues. I am also indebted to the various people who have discussed and debated this issue with me over the past year especially: Maureen Corbett, Marcel Vekemans, Lone Schmidt, Erica Nybro, Erin McClain and Noah Evens.

- 42 -

You might also like