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Health Disparities in Procreation:Unequal Access to Assisted ReproductiveTechnologiesKarni Kissil a & Maureen Davey aa Department of Couple and Family Therapy, Drexel University,Philadelphia, Pennsylvania, USA

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To cite this article: Karni Kissil & Maureen Davey (2012): Health Disparities in Procreation: UnequalAccess to Assisted Reproductive Technologies, Journal of Feminist Family Therapy, 24:3, 197-212

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Journal of Feminist Family Therapy, 24:197–212, 2012Copyright © Taylor & Francis Group, LLCISSN: 0895-2833 print/1540-4099 onlineDOI: 10.1080/08952833.2012.648139

Health Disparities in Procreation:Unequal Access to AssistedReproductive Technologies

KARNI KISSIL and MAUREEN DAVEYDepartment of Couple and Family Therapy, Drexel University,

Philadelphia, Pennsylvania, USA

There is a significant increase in the use of assisted reproductivetechnology to treat infertility, yet access to services is not equal forall women in the United States. Some marginalized groups facesignificant barriers accessing assisted reproductive technology.The authors review obstacles preventing marginalized popula-tions from procreating, based on class, race and ethnicity, age,marital status, sexual orientation, and disability. The sociopoliti-cal climate in the United States that maintains these obstacles isevaluated by the authors in this article. Finally, suggestions areprovided for structural changes to decrease disparities in access toassisted reproductive technology and recommendations for familytherapists working with clients who are unable to access assistedreproductive technology.

KEYWORDS assisted reproductive technology, health policies,infertility, motherhood, health disparities, IVF-ET, inequality,health care

INTRODUCTION

During the last decade the availability and use of assisted reproductive tech-nologies (ART) has steadily increased in the United States (Inhorn & Fakih,2006), yet some groups of women are still unable to access ART. In a culture

Received September 29, 2011; accepted November 11, 2011.Address correspondence to Dr. Karni Kissil, Department of Couple and Family Therapy,

Drexel University, Mail Stop 905, 1505 Race Street, Suite 403, Philadelphia, PA 19102. E-mail:kk424@drexel.edu

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where motherhood is a major part of fulfilled womanhood (McQuillan, Greil,White, & Jacob, 2003), some infertile women know that even though possi-ble solutions are available, they will never “qualify” for them, no matter howhard they try. Some marginalized groups of women face significant barri-ers, preventing them from accessing ART, a health disparity that has beenneglected in the field of family therapy. The purpose of the authors in thisarticle is: (a) to review the rates of infertility and use of ART among variousgroups in the United States, and to explore the barriers preventing specificgroups from accessing ART services; (b) to discuss the political structuressupporting these barriers, and the stakeholders involved; and (c) to providerecommendations for family therapists working with involuntary childlessclients who are unable to access ART in the United States.

ART AND INFERTILITY

The birth of Louise Brown in 1978, arguably one of the most publicized med-ical events of the century, started an era of technology-driven reproductiveinterventions (Katz, Nachtigall, & Showstack, 2002). ART is the use of non-coital techniques to conceive a child and to initiate pregnancy (Robertson,2005). The most common procedures of ART include in vitro fertilizationand embryo transfer (IVF-ET), gamete intrafallopian transfer (GIFT), zygoteintrafallopian transfer (ZIFT), and artificial insemination (Center for DiseaseControl, 2004).

According to the United States’ Centers for Disease Control (CDC),approximately 7.1%, or 2.1 million married couples in the United States areinfertile (CDC, 2004). In 2002, 1.2 million women of reproductive age soughtinfertility-related medical services. There are significant disparities in theprevalence of infertility among women of different races and socioeconomicstatus. Prevalence studies in the United States suggest that approximately6.4% of White women, 7% of Hispanic women, and 10.5% of Black womenare infertile (Inhorn & Fakih, 2006). There is a negative correlation betweenthe level of education and infertility, with rates of infertility dropping as thelevel of education increases (Abma, Chandra, Mosher, Peterson, & Piccinino,1997). Women who have lower socioeconomic status, which are mostlyminorities, tend to have higher infertility rates because of environmental andlifestyle factors, such as high exposure to toxins—especially lead, poverty,poor nutrition, heavy smoking, and increased rates of infectious diseases(Inhorn & Fakih, 2006).

The use of ART in the United States is dramatically increasing. It is esti-mated that today’s ART industry garners annual revenues of $7 billion, afigure that continues to grow as the use of ART soars (Daar, 2008). In theUnited States, which has over 400 fertility clinics, there were 146,244 cyclesof ART initiated in 2009, about double the number of cycles that were

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initiated in 1996 (www.CDC.gov). ART produces approximately 50,000 IVFbabies annually (www.CDC.gov). The increased use of ART in the UnitedStates is likely because of several factors, among them the growing suc-cess rates of ART, increased availability of new and improved reproductivetechnologies, the phenomenon of delayed childbearing among professionalwomen, and an increase in risk factors for infertility such as Chlamydia (TheNew York State Task Force on Life and Law, 1998, as cited in Daar, 2008).

DISPARITIES IN ACCESS TO ART

These statistics imply that the steep increase in the use of ART in the UnitedStates means that this market is largely free from restraints and available forall women who desire to use it. However, prior studies show that only half ofall individuals who are diagnosed as infertile seek treatment to assist themin reproduction (Chandra & Stephen, 1998). While women of color havehigher incidences of infertility, they are also less likely to seek treatment andtend to wait significantly longer before initiating assessment and treatmentas compared to White women in the United States (Inhorn & Fakih, 2006;Jain, 2006). Medical assistance for infertility tends to be used primarily byWhite women and couples who are White, college-educated, able bodied,and affluent (Bitler & Schmidt, 2006; Peterson, 2005). Non-Hispanic Whitewomen are twice as likely as Latina women, and four times as likely as Blackwomen, to have used ART (Peterson, 2005).

Race and socioeconomic status are tough to disentangle regarding bar-riers to accessing ART in the United States. Race and social class are highlycorrelated and it is likely that women in lower to middle socioeconomicclasses do not seek assistance because they cannot afford the high cost ofART. The use of ART is expensive and infrequently covered by insuranceplans. Women with private health insurance coverage are 50% more likelyto have received ART services, as well as women with incomes of more than300% above the U.S. poverty line (Stephen & Chandra, 2000). Several factorshave been suggested as explanations for the unequal access to ART in theUnited States, including cost and socioeconomic status, marital status, age,and legal barriers which are described below (White, McQuillan & Greil,2006).

BARRIERS TO ACCESS TO ART

Barriers Based on Cost and Socioeconomic Status

The most salient barrier to ART for many women is the cost. The averagefee for a single cycle of IVF in the United States is between $10,000–$25,000.The fee is usually paid directly by patients because most health insurers

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do not cover infertility treatments. There is legislation requiring insuranceproviders to either cover or offer to cover treatment for infertility in only15 U.S. states. Even then, not all infertility treatments have to be covered.This suggests that access to ART is directly related to the ability to accessinsurance to cover some of the cost.

In the United States, where insurance coverage is limited, only 50% ofinfertile women seek treatment. In countries where there is a national healthcare system that covers some form of infertility treatment, the percentagesare much higher (e.g., Finland: 67%, Netherlands: 86%, and U.K.: 72%–95%,White et al., 2006). It seems logical that increasing access to health insuranceand mandating that insurers cover infertility care is the answer. However,studies show that mandating insurance to cover infertility treatment has lit-tle to no effect on the use of ART in the United States (Bitler & Schmidt,2006). One of the reasons is that insurance mandates only affect individualswho have access to health insurance, and this group is more likely to beemployed and living in a higher socioeconomic level than the general U.S.population. These are often the same people who can access ART with theirown resources, so insurance coverage tends not to significantly increaseusage among the insured.

Barriers Based on Race and Ethnicity

Disparities in the access and quality of health care in the United States amongracial and ethnic minority groups are well-documented. Similarly, there aredisparities in the use of and access to ART services for women of color com-pared with White women. Part of the reason for the lower utilization is theintersectionality of race and class regarding disparities in wealth and insur-ance coverage. For example, 33% of Hispanics and 20% of Blacks do nothave health insurance, compared to 11% of Whites living in the United States(Daar, 2008). Thus, the cost barriers to ART services significantly affect lowerto middle-income women who are disproportionally non-White. Yet, evenwhen insurance coverage is mandated, racial and ethnic disparities in uti-lization remain unchanged (Bitler & Schmidt, 2006; Jain & Hornstein, 2005).

Regarding race, studies suggest that medical providers are more likelyto have a variety of negative stereotypes about African American patients(Ashing-Giwa & Ganz, 1997; Nelson, 2002; White et al., 2006). Research sug-gests that racial stereotyping among practitioners can contribute to minoritiesrefraining from seeking ART services (White et al., 2006). “If the nonminor-ity community in general, and the ART providers in particular (the majorityof whom are White) perceive minority women as hyper-fertile and minoritymen as hypersexual, the projection of this caricature could be immenselyintimidating for minority patients” (Daar, 2008, p. 30). Not surprisingly, thereis a well-documented mistrust among minorities toward the U.S. health caresystem and medical providers, based on the long history of racism and

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discrimination in the United States (White et al., 2006). Thus, if a minor-ity woman anticipates that a physician will respond to her infertility with astereotypical and prejudicial view, it is easy to understand why this subgroupof infertile women would not seek treatment.

Barriers Based on Marital Status and Sexual Orientation

Both AID (Artificial Insemination by Donor) and IVF-ET offer unmarriedindividuals with and without partners, an opportunity for biological parent-hood that they could not achieve on their own. IVF-ET offers lesbian couplesthe possibility of creating a biological child together. For single male andgay couples, ART is an absolute necessity for procreation. While access totreatment for unmarried individuals can be hindered by the same cost andracial barriers that affect ART access in general, single women and same sexcouples struggle with at least two additional obstacles: (a) provider discrim-ination against single and gay men and women, and (b) legislative efforts toban access to ART for unmarried individuals (Daar, 2008).

In a survey by Gurmankin, Caplan and Braverman (2005), one outof five providers reported denying treatment for unmarried women, andone out of two providers reported denying services for single men or gaycouples. In a similar self-report survey of attitudes among ART medical staff(Steinberg, 1997), ART professionals felt it was their responsibility to usetheir “common sense” to evaluate parenting ability among patients seekingART. Most respondents stated that they would refuse treatment to single orlesbian women out of concern for the potential child’s need to experience“appropriate parenting” (p. 36) that they felt should include both male andfemale parents.

Consequently, single individuals who are fortunate enough to havegood health insurance coverage might find out that the only providerapproved by their health insurance is refusing to provide services on thebasis of their marital status. Since policies regarding marital status are gen-erally not formalized by ART clinics, there is no way for single individualsto find out that they may be disqualified from receiving ART, either whenthey first select a health plan or when they visit a covered infertility clinicfor their treatment.

In addition to provider discrimination, unmarried individuals could facean increasingly hostile statutory environment, as lawmakers in several stateshave tried to limit ART to married heterosexual individuals. In late 2005 andearly 2006, legislators in Indiana and Virginia, introduced legislation thatprohibits health care providers from offering or performing any medicalprocedure on an unmarried woman for the purpose of conception or pro-creation. Both bills were rejected (Daar, 2008). According to current laws inAlabama, a woman cannot undergo artificial insemination without a writtenconsent from her husband. In Florida, Nevada, and Texas gestational services

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are limited to married couples. While access to surrogacy by single andsame sex partners is not prohibited, contracts for gestational services areonly legally enforceable if the commissioning couple is legally married. So,the primary way for unmarried men to biologically form a family is currentlyunavailable in these three states.

Barriers Based on Age

Among the 15 U.S. states that currently mandate health insurance cover-age for ART, several limit coverage based on woman’s age. For example,in Connecticut and Rhode Island insurers are required to provide coverageonly to women under 40, in New York the cutoff is 44, and in New Jersey it is46. Most ART clinics in the United States set age limits for women that varyfrom early to mid-40s (Stern, Cramer, Garrod, & Green, 2001). Many pol-icy makers, insurers, and providers have stated that older women might nothave the energy and patience to cope with babies when they are in their 50sand with teenagers when they are in their mid-60s. However, older womenhave always played an important role in childrearing, including being thecaregivers of grandchildren if parents die or are otherwise unable to parent.We believe this is a sexist view, as there has never been any strong con-demnation of men aged 50 or older from becoming fathers (Peterson, 2005).Indeed, most ART clinics do not set any age limits for men (Stern et al.,2001). Since life expectancy has increased dramatically and some womenhave given birth to babies naturally in their mid to late 50s prior to theadvent of ART, the logic behind the concern that older women are not capa-ble of parenting and might not live long enough to care for their children isquestionable (Fisher & Sommerville, 1998).

Barriers based on HIV Diagnosis

Many men and women coping with HIV seek help from physicians in orderto become biological parents, without placing their uninfected partner orbaby at risk. In most cases they are discouraged from proceeding or simplydenied access to reproductive care (Sauer, 2003). Although the HIV epidemicstill threatens to kill millions living in impoverished countries, in more afflu-ent countries like the United States, availability of effective HIV medicationshas radically changed the prognosis of infected people. In fact, HIV is nowconsidered a “chronic illness” and not a deadly disease (Al–Khan, Colon,Palta, & Bardeguez, 2003). Still, ART physicians have expressed concernsabout the potential risks of transmitting the virus to the embryo, fetus, or tothe mother, as well as worry about the socioeconomic impact of raising achild by a parent with a potentially fatal disease.

Special reproductive technology with “washed sperm” has been avail-able in Europe since the early 1990s, with more than 2000 procedures

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done and 300 children born without even a single case of transmission(Gillin-Smith, Smith, & Semprini, 2001). Yet most ART practitioners in theUnited States are unwilling to offer ART to individuals diagnosed with HIV.In the early 1990s several professional societies, including the CDC and theAmerican Society for Reproductive Medicine (ASRM) published recommen-dations against treating HIV discordant couples (ASRM, 1993; CDC, 1990).Additionally, several U.S. states have passed legislation which asserts thatknowingly inseminating a woman with sperm from an HIV-seropositive maleis a criminal act (Sauer, 2003). The possibility of civil and criminal liabilityundoubtedly dissuades many infertility doctors and medical centers fromoffering treatment to HIV discordant couples.

Although both the American College of Obstetrics and Gynecology(ACOG) and the ASRM revised their earlier statements in 2001 and 2002 andnow recommend policies of non-discrimination (Al–Khan et al., 2003), fewerthan 5% of clinics in the United States currently offer reproductive careto HIV-discordant couples (Sauer, 2003). Also, the services currently avail-able are only for couples in which the men are HIV positive. There are noART treatments currently available for HIV positive women (Lyerly & Faden,2003).

Training medical staff and preparing infertility clinics to handle HIVvirus is costly. Since government authorities have for the most part refusedto sponsor research related to ART and HIV (Sauer, 2003), and there islikely no large profit involved to get pharmaceutical companies interested,individual fertility clinics are left to fund their own projects. As a result,there is no push in the field to make ART services more available forthis population. Clearly, the cultural attitudes associated with HIV, morethan HIV per se, are a major hurdle for ART access (Lyerly & Faden,2003).

Furthermore, couples coping with HIV who live in proximity to oneof the very few clinics where ART services are offered to them, might findout that these services are still out of reach. Most individuals diagnosedwith HIV are without the means to afford the high price of ART treatments,and the few insurance providers that do cover ART, exclude men knownto be HIV positive (Sauer, 2003). Thus, the intersection of class, health, andstigma denies the right of reproduction for this marginalized population inthe United States.

LEGISLATION AND REGULATION OF ARTIN THE UNITED STATES

There is currently no federal legislation in the United States regulating accessto ART (Apel, 2008). The only federal legislation related to ART is the1992 Assisted Reproductive Technology Act calling for greater surveillance

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and standardized reporting methods in ART (Chang & DeCherney, 2003).This 1992 act resulted in three noteworthy changes:

● the establishment of a registry of all programs performing ART. This wasorganized by the Society for Assisted Reproductive Technology (SART), anindependent organization, affiliated with the ASRM;

● the provision of clinic-specific reports available to consumers. Annual ARTsuccess rates are published by the CDC in collaboration with SART, who isin charge of collecting, reporting, and verifying data from all participatingclinics. Participation is voluntary, about 85% of fertility clinics report toSART; and

● the passing of Public Law 102–493, the Fertility Success Rate andCertification Act, signed by President George Bush in October 1992.This act charges the CDC with developing a list of recommended stan-dards for certification of the embryology laboratory and with publishingnational and clinic-specific data on all ART procedures in the United States(Chang & DeCherney, 2003).

This current lack of federal legislation may be because health issuesare most often left to state legislation. However, we believe the key reasonis political. The issue of assisted human reproduction is politically chargedbecause of its perceived affiliation with the abortion debate (Daar, 1997).Issues about the creation, storage, and disposal of embryos tend to triggerthe current debate about abortion in the United States. We believe that theextremely polarized U.S. political climate about abortion delays progress inthe federal legislation of ART, including access to ART.

Individual states have been very slow to provide ART legislation. In thepast several years three bills have been introduced in state legislatures thatdeal directly with accessing reproductive technologies. Indiana and Virginiaintroduced bills that proposed to limit ART services to only heterosexualmarried women. New Hampshire proposed a bill to allow access to ART toall people. All three bills have failed (Apel, 2008).

Most available legislation at the state levels has restricted accessand legalization of surrogacy. Seven states (Arizona, Indiana, Michigan,Nebraska, New York, North Dakota, and Utah) and Washington, D.C. haveall banned surrogacy contracts by declaring such agreements to be null andvoid under state law. For example, in Michigan anyone who enters a sur-rogacy contract can get fined (up to $50,000) and/or go to jail (for up to5 years).

Without specific ART anti-discrimination legislation, the law’s ability torespond to the barriers described above is weak (Daar, 2008). Various federaland state civil right statutes prohibit discrimination against patients on thebasis of a host of factors including race. For example, Title VI of the Federal

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Civil Rights Act of 1964 prohibits physicians and hospitals who are receivingfederal funding from discriminating in the provision of health care basedon race, color, religion, or national origin. States have likewise enacted lawsprohibiting discrimination in health care, such as California’s Unruh CivilRight Act (1959) that guarantees full, equal accommodations and services inbusiness establishments, including health care providers, regardless of sex,race, color, religion, ancestry, national origin, disability, medical condition,marital status, or sexual orientation.

At least 10 U.S. states (e.g., California, Washington DC, Hawaii, Illinois,Maine, Maryland, Massachusetts, Michigan, Minnesota, and New Hampshire)have these statutes that include both marital status and sexual orientation.The problem with legal cases that are based on these civil right acts is thatthe burden is on the plaintiff to prove an intentional discrimination on thepart of the provider (“a smoking gun”). Consequently, the history of civilrights litigation under title VI of the 1964 Act was described as ineffective foraddressing persistent health care inequalities in the United States (Matthew,2006 as cited in Daar, 2008).

An access-related area that has been active in litigation is health insur-ance coverage. The battle of the medicalization of ART services has beenwaged in the health insurance arena, with courts varying widely on whetherinfertility treatment should be considered medical treatment in the litigatedcontext. For many years, insurance providers have been reluctant to acceptinfertility as a medical illness (Callens, 1992) even though professional med-ical societies such as the ASRM and the American College of Obstetriciansand Gynecologists (ACOG) have long considered infertility as a diagnosableand abnormal functioning of the reproductive system (Daar, 2008). Althoughthe perception of infertility as a medical condition is growing among insur-ance providers, some insurers still take the stance of being unwilling tocover treatment expenses, first, by claiming that these treatments are exper-imental and then by claiming that infertility treatments do not cure infertilityand are not necessary for overall physical health. In many cases this stancehas been accepted in court. For example in Kinzie v. Physicians LiabilityInsurance Co (1987), the court ruled that IVF-ET was not a medically nec-essary service because it was elective and was not required to cure orpreserve Mrs. Kinzie’s physical health. The court also ruled that it was notmedically necessary to a woman’s health to give birth to a child (Callens,1992).

ART STAKEHOLDERS

Many stakeholders have interests in either regulating or not regulating accessto ART. Attempts to regulate access to ART have been made by the med-ical profession, through its various medical associations. For example, the

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American Medical Association (AMA) has taken the position that healthcareproviders should not discriminate against individuals due to sexual orien-tation and has encouraged all medical practices and physicians to include“sexual orientation, sex, or perceived gender” in any nondiscrimination state-ments (Apel, 2008). ASRM along with its affiliated organization, SART, hasissued written reports from its internal ethics committee on a number ofissues regarding access to ART, a recent one addressed access to ART bygays, lesbians, and unmarried individuals (Ethics Committee of ASRM, 2009).The recommendations in the report were that “programs should treat allrequests for assisted reproduction equally with regard to marital status orsexual orientation” (p. 1190). The committee encouraged fertility clinics todevelop explicitly written policies regarding access to ART and to have deci-sions jointly agreed upon by all staff in the program, instead of by individualphysicians. In addition, as mentioned above, both the ACOG and ASRM havepublished their recommendations for anti-discrimination regarding access toART for men coping with HIV, thus reversing the previous recommendationto forbid access to men diagnosed with HIV (Sauer, 2003). The problem withthese reports is that the recommendations are simply recommendations; theyare not enforceable (Apel, 2008).

Although these professional associations have responded with clear rec-ommendations and proposals for change, the physicians’ and ART clinics’responses have been slow (Geiger, 2006). “Physicians are reluctant to believethat their own behaviors, those of their peers, and the policies of their insti-tutions may often violate their conscious commitments to equity” (Geiger,2006, p. 271). In fact, the Kaiser Foundation National Survey of Physicians(2002) found that 55% of doctors believe that the health care system “rarely”treats people unfairly on the basis of race or ethnicity, and 10% stated thatthis is “never” the case (Kaiser Family Foundation, 2002 in Geiger, 2006).Taken together with Steinberg’s (1997) findings that physicians feel it is theirmoral responsibility to make decisions regarding the welfare of the unbornchild, it is clear that physicians are not aware of their own bias toward cer-tain subpopulations and the contextual factors influencing their “medical”decision making.

None of the medical associations have pushed for the legislation of ART.This is probably because the medical profession prefers the status quo ofnon-legislation and self-regulation. This attitude is related to the U.S. laissez-faire approach to medical decision making (Chang & DeCherny, 2003; Daar,1997) and the value of “physician autonomy,” which most physicians likelywould not want to compromise. This self-regulation has been criticized forlacking transparency and for being self-serving (Moses, 2005 in Apel, 2008).Moreover, while the medical establishment might have the expertise to regu-late the medical and scientific aspects of ART, it has little to no knowledge orability to judge socially complex issues like parenting ability or the welfare

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of a child (Stern et al., 2001). Thus, the lack of regulation puts physicians inthe roles of gatekeepers or “social welfare evaluators,” a role that is typicallynot part of their medical training (Pearn, 1997).

Another stakeholder in ART is the insurance providers who oppose anykind of legislation. The less regulation, the more freedom these groups haveto increase their profits and control the services they provide (or deny). It isplausible that the lack of federal legislation in access to ART is partly due totheir significant lobbying power at all levels of the U.S. government.

A third type of stakeholder is ART advocacy groups. The most promi-nent group is RESOLVE, a consumer-based national fertility association thatoften lobbies state and federal legislatures on behalf of its infertile members.RESOLVE has been advocating that state lawmakers require health insurerswho offer plans in their state to cover infertility services. The group has hadsome success; for example, in Massachusetts, the inclusion of infertility ser-vices in the comprehensive health care reform. While primarily focused onremoving economic barriers through the expansion of health insurance forART, this group has recently expanded their focus to also include lesbian,gay, bisexual, and transgender (LGBT) advocacy.

There are many advocacy groups for LGBT, although none of themspecifically deal with access to ART. For example, the Human RightsCampaign (HRC) is a grassroots organization advocating for LGBT and aim-ing to reduce inequality in all areas. Although the organization is not activelyinvolved in access to ART services, it does track legislation in this area amongall U.S. states as well as at the federal level. Similarly, there are various HIVadvocacy groups such as ACT UP, however, a search of a sample of theirwebsites did not bring up any specific attention to access to ART.

The last interest group is the public, including infertile people and theirsupport networks. Some progress has been made in providing more healthinsurance coverage because of individual claims against insurance providers.For example, in 1987, Kaiser Foundation Health Plan of California agreedto pay between $25 million and $50 million for IVF-ET treatments. Theagreement brought an end to a class action lawsuit filed by Kaiser’s patientswho were denied IVF treatment on the grounds that this procedure wasexperimental, when in fact it was not (Callens, 1992). Kaiser continues todeny IVF-ET services to future patients with the claim that the procedure ismedically unnecessary to the overall health of the patient, instead of usingthe experimental claim.

In a more recent high-profile case (North Coast Women’s Care MedicalGroup v. Benitez 2008), the California Supreme Court ruled that a refusal totreat a lesbian patient based on the physician’s religious views violated statelaw. The court found that the assertions of religious freedom are preemptedby state law that prohibits discrimination in public accommodations basedon sexual orientation (Ethics Committee of ASRM, 2009).

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DISCUSSION

Robertson (2005) defines “procreative liberty” as the widely accepted fun-damental individual right to either have or avoid having children. On theother side of this assertion, eugenic science which was prevalent in theUnited States several decades ago linked ideas about natural “fitness,” judg-ments about social acceptability, and government monitoring with limitingreproduction to only “legitimate” families (Steinberg, 1997). Although todaythere are no acts of sterilization involved to force certain populations tonot procreate, the ideal of procreative liberty is not yet fully realized forsome people unless they “qualify” or have the necessary financial means toaccess treatments for infertility (Peterson, 2005). By preventing the access of“non-legitimate” groups to procreation technology, the current practice ofART in the United States supports reproductive “fitness,” and thus executesthe eugenic idea of reproducing an ableist, classist, heterosexist, and racistsociety (Steinberg, 1997).

In the absence of laws regulating access to ART, decision making aboutaccess is left for the fertility clinics and the health care professionals. As mostclinics do not have explicit written policies (Stern et al., 2001) and those thatdo, do not necessarily follow it (Stern et al., 2001), physicians often relyon their “common sense” to select and de-select their patients. In fact, theprinciple of “physician autonomy” legally allows physicians to set their owncriteria for client selection (Peterson, 2005). In the absence of universallyaccepted psychological or other criteria for adequate parenting, medical ARTprofessionals often fall back on traditional unfounded personal beliefs andsocially accepted biases to justify rejection of particular individuals for ART.Physicians who provide ART services should not be able to deny treatmenton the basis of patient personal characteristics like class and sexual orien-tation. Physicians are not social welfare and psychological evaluators andshould not use patients as a means to express their views about the socialcontext of parenthood.

Further, to ensure equitable access to reproductive services, it is cru-cial that ART clinics provide clearer, defensible policies for all patients(Stern et al., 2001). Such policies should be determined by ethics com-mittees, which include representatives of the underserved and minoritygroups whose needs otherwise would remain unrecognized (Peterson,2005). Additionally, ART clinics should provide, along with their annualsuccess rates, a detailed description of the demographics of their patientsand demographics of patients who were denied ART treatment. This trans-parency is essential to effectively monitor disparities and identify problemART providers and clinics (Geiger, 2006).

The public debate regarding ART is often restricted to doctors, scientists,religious groups, and politicians. Many groups, such as the poor, the unedu-cated, and racial and ethnic minorities, have an equal right to participate in

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the debate but have neither the appropriate skills to effectively present theirstance nor the opportunity to do so. Not surprisingly, the groups that arenot part of the debate are the same ones who are commonly excluded fromART (Peterson, 2005). Until the needs and the rights of these marginalizedgroups in the United States are valued and addressed in the public politicalcontext, it is unlikely that significant changes in access to ART will occur.

IMPLICATIONS FOR FAMILY THERAPY

There is a large body of research on infertility as well as literature address-ing psychotherapy with infertile couples. However, the existing literaturereflects the reality of the stratified reproduction in the United States. Thesame groups that are barred from ART, are also excluded from the scientificdiscourse on infertility, as most of the research has been done with con-venient samples of heterosexual, White, high socioeconomic status couplesgoing through infertility treatment (Bell, 2009).

The literature addressing the experience of infertility treats it as amedical condition with psychological consequences—primarily distress andlow self-esteem—while the social construction of infertility has often beenignored (Greil, Slauson-Blevins, & McQuillan, 2010). Many scholars and clin-icians recommend addressing the discourse of the “motherhood mandate”(Koropeckyj-Cox & Pendell, 2007), the societal equation of motherhoodwith womanhood, as part of effective work with couples struggling withinfertility (e.g., Diamond, Kezur, Meyers, Scharf, & Weinshel, 1999). Still,for marginalized groups living in the United States who do not have accessto ART, this discourse is only part of the picture. The current “intensivemothering” ideology (Johnson & Swanson, 2006) is the additional part thatconstructs their potential mothering as flawed and facilitates their exclusionfrom ART.

“Intensive mothering” is based on a White, middle class, heterosexualstandard to which “other” mothers are compared. Mothers who are sacri-ficing and child-centered are “good,” mothers who are unable to fulfill thisideal tend to be devalued and marginalized (McCormack, 2005). These inter-secting discourses can create conflict for women who cannot adhere to oneor both. Thus, infertile single women, ethnic and racial minorities, womenwith HIV, and lesbian women are not only childless, which places them atodds with the motherhood mandate, but they must also grapple with thenegative stereotypes that they should not be mothers in the first place (Bell,2009).

Effective couple and family therapy with infertile clients who addition-ally face structural barriers to ART must address both parts of this discourse.Exposing the hidden barriers and acknowledging any experiences of prej-udice and bias can help clients feel understood, validated, and supported.

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Further, when infertility is discussed as no more than a medical condition,the only viable solution is to pursue a “cure.” However, by contextualiz-ing and deconstructing infertility, clients can start exploring other possiblerealities.

Framing infertility as the absence of a desired socially constructed role,and addressing the social, political, and cultural structures that constructmotherhood as the ultimate goal while at the same time label some womenas unfit mothers, allows clients to experience the problem as outside ofthemselves and begin to free themselves from the societal stigma. Whenclients begin to question the motherhood mandate and the intensive moth-ering ideology, they can begin to challenge the dominant discourse as wellas their own internalized stigma. By rejecting the external social and politicaldefinitions of who they are, family therapists can help clients create morepossibilities for them to construct their own preferred lives (Remennick,2000).

Addressing the motherhood imperative as a social discourse can helpclients explore their motives and reasons for desiring children, and whetherthis has been a personal goal or an external narrative that was put uponthem. This conversation can pave the way to the consideration of alternativeoptions. Thus, some clients may realize that the pursuit of children was notreally their own dream, and they may later comfortably define themselvesas voluntary childless. Other clients may decide to pursue social mothering(Bell, 2009) through foster-parenting, step-parenting, parenting of other kin,and other caretaking arrangements. Still others may be empowered to fightthe system in any way they can in order to gain access to ART and create abiological child.

As family therapists themselves are embedded and influenced by theirown social contexts, they should be aware of their own values, biases, andbeliefs regarding motherhood and parenting. Therapists should challengethemselves and explore where they are situated within these discourses.Failure to do so might result in colluding with the current barriers to ARTin the United States and inadvertently leading their clients in a direction thatfits the therapist’s preconceived notions regarding who is a fit mother (suchas directing clients to choose childlessness).

REFERENCES

Abma, J. C., Chandra, A., Mosher, W. D., Peterson, L. S., & Piccinino, L. J.,(1997). Fertility, family planning and women’s health: New data from the1995 National Survey of Family Growth. Hyatsville, MD: The US Departmentof Health and Human Services.

Al–Khan, A., Colon, J., Palta, V., & Bardeguez, A. (2003). Assisted reproductivetechnology for men and women infected with Human Immunodeficiency VirusType 1. Clinical Infectious Diseases, 36 , 195–200.

Dow

nloa

ded

by [

Kar

ni K

issi

l] a

t 10:

40 2

2 A

ugus

t 201

2

Health Disparities in Procreation 211

American Society for Reproductive Medicine, (1993). Fertility & Sterility, 59, 1–39.Apel, S. B. (2008). Access to assisted reproductive technologies. Michigan State

University Journal of Medicine and Law, 12, 33–49.Ashing-Giwa, K., & Ganz, P. A. (1997). Understanding the breast cancer experience

of African-American women. Journal of Psychosocial Oncology, 15, 19–35.Bell, A. V. (2009). “It’s way out of my league:” Law-income women’s experiences of

medicalized infertility. Gender & Society, 23, 688–709.Bitler, M., & Schmidt, L. (2006). Health disparities and infertility: Impacts of state-

level insurance mandates. Fertility and Sterility, 85, 858–865.Callens, S. (1992). IVF in the USA, who pays for it? Medicine and Law, 11, 73–81.Centers for Disease Control and Prevention, (1990). HIV-1 infection and artificial

insemination with processed semen. Morbidity and Mortality Weekly Report,39, 255–256.

Centers for Disease Control and Prevention (2004). Assisted reproductive technologysuccess rates: national summary and fertility clinic reports, 2001. Atlanta, GA:Centers for Disease Control and Prevention.

Chandra, A., & Stephen, E. H. (1998). Impaired fecundity in the United States:1982–1995. Family Planning Perspectives, 30, 34–42.

Chang, W., & DeCherney, A. (2003). History of regulation of assisted reproductivetechnology (ART) in the USA: A work in progress. Human Fertility, 6 , 64–70.

Daar, J. F. (1997). Regulating reproductive technologies: Panacea or paper tiger?Houston Law Review, 34, 609–610.

Daar, J. F. (2008). Accessing reproductive technologies: Invisible barriers, indelibleharms. Berkley Journal of Gender, Law and Justice, 23, 18–82.

Diamond, R., Kezur, D., Meyers, M., Scharf, C. N., & Weinshel, M. (1999). Coupletherapy for infertility. New York, NY: Guilford Press.

Ethics Committee of the American Society for Reproductive Medicine (2009). Accessto fertility treatment by gays, lesbians and unmarried persons. Fertility andSterility, 86 , 1190–1193.

Fisher, F, & Sommerville, A. (1998). To everything there is a season? Are theremedical grounds for refusing fertility treatment to older women. In J. Harris &S. Holm (Eds.), The future of human reproduction (pp. 203–220). Oxford, UK:Oxford University Press.

Geiger, H. J. (2006). Health disparities. What do we know? What do we need toknow? What should we do?. In A. J. Schultz & L. Mullings (Eds.), Gender, race,class, and health. Intersectional approaches (pp. 261–288). San-Francisco, CA:Wiley.

Gillin-Smith, C., Smith, R. J., & Semprini, A. E. (2001). HIV and infertility: Time totreat. British Medical Journal, 322, 566–567.

Gurmankin, A., Caplan, A., & Braverman, A. (2005). Screening practices and beliefsof assisted reproductive technology programs. Fertility and Sterility, 83, 61–67.

Greil, A. L., Slauson–Blevins, K., & McQuillan, J. (2010). The experience of infertility:A review of recent literature. Sociology of Health and Illness, 32, 140–162.

http://www.cdc.gov/reproductivehealth/Data_Stats/index.htm#ART (retrievedSeptember 29, 2011).

Inhorn, M. C., & Fakih, M. H. (2006). Arab Americans, African Americans, andinfertility: Barriers to reproductive and medical care. Fertility and Sterility, 85,844–852.

Dow

nloa

ded

by [

Kar

ni K

issi

l] a

t 10:

40 2

2 A

ugus

t 201

2

212 K. Kissil and M. Davey

Jain, T. (2006). Socioeconomic and racial disparities among infertility patientsseeking care. Fertility and Sterility, 85, 876–881.

Jain, T., & Hornstein, M. D. (2005). Disparities in access to infertility services in astate with mandated insurance. Fertility and Sterility, 84, 221–223.

Johnson, D. D., & Swanson, D. H. (2006). Constructing the “good mother:” Theexperience of mothering ideologies by work status. Sex Roles, 54, 509–519.

Katz, P., Nachtigall, R., & Showatack, J. (2002). The economic impact of the assistedreproductive technologies. Nature Medicine, 8, 29–32.

Koropeckyj-Cox, T., & Pendell, G. (2007). Attitudes about childlessness in the UnitedStates. Journal of Family Issues, 28, 1054–1082.

Lyerly, A. D., & Faden, R. R. (2003). HIV and assisted reproductive technology:Women and healthcare policy. The American Journal of Bioethics, 3, 41–43.

McCormack, K. (2005). Stratified reproduction and poor women’s resistance.Gender & Society, 19, 660–679.

McQuillan, J., Greil, A., White, L., & Jacob, C. (2003). Frustrated fertility: Infertilityand psychological distress among women. Journal of Marriage and the Family,65, 1007–1018.

Nelson, A. (2002). Unequal treatment: Confronting racial and ethnic disparities inhealth care. Journal of the National Medical Association, 94, 666–668.

Pearn, H. (1997). Gatekeeping and assisted reproductive technology. The ethi-cal rights and responsibilities of doctors. Medical Journal of Australia, 167 ,318–320.

Peterson, M. M. (2005). Assisted reproductive technologies and equity of accessissues. Journal of Medical Ethics, 31, 280–285.

Remennick, L. (2000). Childless in the land of imperative motherhood: Stigma andcoping among infertile Israeli women. Sex roles, 43, 821–841.

Robertson, J. A. (2005). Gay and lesbian access to assisted reproductive technology.Case Western Reserve Law Review, 55, 323–372.

Sauer, M. V. (2003). Providing fertility care to those with HIV: Time to re-examinehealthcare policy. American Journal of Bioethics, 3, 33–40.

Steinberg, D. L. (1997). A most selective practice: the eugenic logic of IVF. Women’sstudies International Forum, 20, 33–48.

Stephen, E. H., & Chandra, A. (2000). Use of infertility services in the United States:1995. Family Planning Perspectives, 32, 132–137.

Stern, J. E., Cramer, C. P., Garrod, A., & Green, R.M. (2001). Access to services atassisted reproductive technology clinics—A survey of policies and practices.American Journal of Obstetrics and Gynecology, 184, 591–597.

White, L., McQuillan, J., & Greil, A. L. (2006). Explaining disparities in treatmentseeking: The case of infertility. Fertility and Sterility, 85, 853–856.

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