Impoverished Appalachia and Kentucky genomes: what is at stake? How do feminists reply?

Abstract

Genomic medicine can and does improve the health of individuals, but it is also important to question the role genomic research plays in maintaining inequality. Here we raise questions about the possible impact of genomic medicine on the lives and well-being of impoverished women in the United States, especially when they are already routinely stereotyped as deficient, whether behaviourally, mentally, or physically. In the context of these issues, we present a brief history of the confluence of eugenics and sexuality, childbirth, and sterilization, and we examine the present birth control practices, especially tubal ligation, of women in poor rural communities in the United States. Do past eugenic ideologies, or classist and racist motivations influence how impoverished Appalachian women are treated gynecologically? How will they be treated in the future? We argue that the issues regarding genomic research involving reproduction are very complex and multi-layered and call for feminist scholars to develop broad research agendas to address these pressing questions.

Introduction

The website of the Human Genome Project states, ‘Gene testing already has dramatically improved lives. Some tests are used to clarify a diagnosis and direct a physician toward appropriate treatments, while others allow families to avoid having children with devastating diseases or identify people at high risk for conditions that may be preventable’ (2005a, p. 214). In a discussion of behavioural genetics research the site further states: ‘Researchers in the field of behavioral genetics have asserted claims for a genetic basis of numerous physical behaviors, including homosexuality, aggression, impulsivity, and nurturing. A growing scientific and popular focus on genes and behavior has contributed to a resurgence of behavioral genetic determinism—the belief that genetics is the major factor in determining behavior’ (Human Genome Program, 2005b). And the same webpage asks, ‘What indications are there that behavior has a biological basis?’ One of the illustrations that is given to answer this question is that ‘In humans, some behaviors run in families. For example, there is a clear familial aggregation of mental illness’ (Human Genome Program, 2005b).

While recognizing that genomic medicine can and does improve the health of individuals, this article aims to open our understanding and poses questions regarding the impact that future genomic research might have on impoverished women in the United States. We use as a case study women living in Appalachia, where residents have been and are routinely stereotyped as deficient in some way, whether behaviourally, mentally or physically. More specifically, we explore the brief history of eugenic sterilization among impoverished women, how it is currently practised, and the possibilities for the growth of eugenic sterilization in the guise of a response to genomic research. We attempt to tease out some of the possible classist and racist motivations and examine whether or not contemporary trends in birth control use are still informed by eugenic ideology, as well as whether or not there are any similarities between past trends and contemporary trends in birth control use, specifically in rural Kentucky. To what extent might impoverished women be encouraged not to reproduce and/or be (c)overtly guided to undergo tubal ligation surgery?

Troy Duster (2003) advises that the boundary between biology and socially constructed inequalities is frequently blurred. He warns social scientists to be vigilant of those using genetics as a justification for both creating and/or sustaining conditions of inequality, often in very subtle ways. For example, he describes a case in the 1960s in which four black men collapsed and died while completing basic training requirements at high altitudes for the US army. The exact nature of their deaths was never determined, but medical researchers discovered that each man was a carrier of the sickle-cell gene. Although none of the subsequent research discovered a link between being a carrier of the sickle-cell gene and mortality, the US Air Force Academy soon implemented a policy, which remained in effect until 1979, that automatically excluded black men who were carriers of sickle cell from their institution. In addition, Duster (2003) describes a small town in south Wales as having the highest rate of spina bifida in the world. This town is also highly industrial. In both scenarios genetic explanations draw attention away from the real issues, which are socially rather than biologically constructed. These biological explanations may lead to solutions that not only fail to target the true problem, but in some cases could perpetuate the problem and further entrench those oppressed in social control. Hence, we argue that feminist scholars must raise research questions such as: Among the most impoverished, what behaviours are considered ‘preventable’? or ‘genetically determined’? What may be the underlying ethical and social issues surrounding genomic-based sterilization? Who speaks for poor women regarding their reproductive lives? This article seeks to explore these issues further, specifically looking at particular aspects of the reproductive health care of impoverished American rural women.

Theoretical stance

Contemporary literature in the area of genomic research warns of a divide between professionals' understanding of genomic medicine and the understanding of the patients whom they serve. Poland et al. (2005, p. 177) argue that health professionals need to become what they refer to as ‘place sensitive’ when doling out care to their patients. In other words, they advocate a more holistic approach in health care, where practitioners have a better understanding of who also lives around the patient, power structures, social norms, cultural and physical environment, socio-political-economic structure of the community, for example, as in Eastern Kentucky. While the authors admit this does not lend itself to an orderly, administrative rationale in which technologies can be dispensed homogeneously, they do assert that such an approach avoids the ‘symbolic violence’ Poland et al. (2005, p. 178) that sometimes results from the lopsided interactions that result when people perceive the authority of health care providers as legitimate and thereby contribute to their own subordination (Bourdieu, 1990).

In a similar vein, Kelly (2003) found that often patients do not perceive themselves as being treated fairly by health care professionals. In interviews with 80 women from rural southern Kentucky who had troubled pregnancies or children with special needs, Kelly found that interviewees frequently reported that they perceived feeling ‘inferior’ in their interactions with physicians. They believed that the physicians ‘actions and manners toward their patients were guided by stereotypes they held about them rather than a clear understanding of their situation’. Similar to Poland et al. (2005), Kelly (2003) attributes these types of fractured interactions to a lack of understanding on the part of physicians of their patients' cultural space. In fact, Huniche (2003) found that individuals facing illness may not react to treatment in the manner that they perceived as approved by their health care professionals, or even their own family members. Huniche argues that understanding difference regarding perceptions about illness and treatment has broad implications on not only the way in which health care is administered but also with regard to ethics.

Wakefield and Poland (2005) warn that even the best intentions can sometimes lead to problematic outcomes for those most vulnerable in society. In their criticism of social capital as it is used in conjunction with improved health care, they assert that although the focus of social capital in health care as a means to strengthen patients' rights has face value in that it seems to promote networks for empowerment and community cohesion, it is necessary not to ignore the power structures that drive the process. Material resources still contribute to the process, and only focusing on group or community cohesion, while overlooking individuals' positions within the existing social structure, may lead to diminishing the importance of inequality and its implications for improved health care, such as genomic medicine to provide ‘better’ health outcomes for impoverished families. Fainstein (2001) and Navarro (2002) would also argue that increasing the social networks of particular populations does not necessarily lead to increased equity in health care but in fact may lead to increased social control of those populations.

We would argue that these perspectives are especially useful in examining the contemporary picture of emerging norms regarding genomic research, especially with regard to those marginalized women in our society. We must be careful to recognize that the carefully constructed social ‘reality’ of assisting women and families in the prevention of serious, horrific disease is imbedded within a social construction of ideas regarding who is fit to reproduce. For example, the reality of living in poverty (behaviours) might become restructured to fit the ideology of poverty (women's disempowerment, their inability to care for themselves or their children, crime, mental illness, etc.) rather than recognizing these behaviours as survival strategies necessary for the political economy within which they live.

Background of eugenics in the United States and in Kentucky

Eugenics has a long and interesting history in the United States. Francis Galton, a cousin of Charles Darwin, is recognized as initiating eugenics in 1883. In the United States, men such as Harry Sharp, Madison Grant, David Starr Jordan, Paul Popenoe, Charles Davenport, Harry Laughlin, and many others stand out as those who dedicated their careers to social and medical policies to prevent those deemed burdens on society from reproducing. Laughlin, for example, was a chief lobbyist for compulsory sterilization in the United States and won a gold medal in 1936 from the Nazi party for his sterilization model (Carlson, 2001).

The link between eugenics and sterilization in the United States really developed with Harry Sharp, who argued for the right to sterilize male criminals, and is credited as the first physician to perform vasectomies; he was personally responsible for 176 vasectomies of boys and young men from 1899 to 1907. Sharp also successfully lobbied for compulsory sterilization of women in Indiana in 1907. It soon became clear that the best way to prevent the ‘unfit’ from propagating was by sterilizing women (Carlson 2001). This belief was initiated and fuelled by Elisha Harris' 1877 publication entitled The Jukes: A Study in Crime, Pauperism, Disease, and Heredity, detailing the life of an impoverished population of immigrants living in Ulster County in the state of New York. Based on this work, Harris dubbed a woman as ‘Margaret, Mother of Criminals’, because he claimed to be able to trace six generations of criminals from her. Harris claimed that this woman alone had cost the county ‘hundreds of thousands of dollars’ (Carlson, 2001).

It was not until 1927, however, that compulsory sterilization was legally legitimized in the eight to one US Supreme Court decision Buck v. Bell. In defence of the ruling Justice Oliver Wendell Holmes, Jr wrote,

It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes (Buck v. Bell 274 US 200 1927).

There were many discrepancies within the Buck case that were never brought to light; for example, rather than being ‘sexually immoral’, the plaintiff had been raped by a relative. Nevertheless, based on this case, and sustained by the underlying eugenic ideology, compulsory sterilization laws were passed in thirty of the fifty states (see Carlson, 2001). By 1940, 35,878 compulsory sterilizations had been carried out nationwide with many having taken place prior to Buck v. Bell (ibid.).

Although the US Supreme Court has never fully reversed Buck v. Bell, compulsory sterilization laws are all but obsolete today, thanks in part to other litigation. For example, the famous case of Minnie and Mary Alice Relf of Montgomery, AL, horrifically illustrates the classist, racist and misogynistic nature of eugenics ideology (see Littlewood, 1977 for a full discussion of the case). Both girls, aged 12 and 14, were surgically sterilized without their own or their mother's consent because ‘boys were hanging around’, though later investigation found no evidence of sexual activity by the girls.

While criminal behaviour was used as the basis for male sterilization, feeble-mindedness provided adequate reason to sterilize women, and alleged sexual immorality among women was considered a tell-tale sign of feeble-mindedness (Kline, 2001). Kline found for example (2001, p. 54), that the specialist in heredity and eugenics, Paul Popenoe, supervised the reproductive health of and examined female patients at the Sonoma State Hospital in California, which was the leading hospital of compulsory sterilizations in the United States at the time. The May 1927 issue of the Journal of Social Hygiene, mentioning the Sonoma State Hospital, revealed that sexual immorality included a laundry list of offences. Of 149 female patients, all of whom were sterilized by the hospital, more than half were considered ‘sexually delinquent’. Their offences, listed in their records, included ‘passionate’ (a term that was used to describe patients 19 different times), ‘immoral’ (used 17 times), ‘promiscuous’ (used 10 times), ‘masturbator’ (used 8 times), ‘oversexed’, ‘incontinent’, ‘sly and profane’ and ‘sexually wayward’. Only three women sterilized during Popenoe's tenure were committed to the hospital for offences then recognized as sexual crimes: adultery, prostitution and homosexuality.

For otherwise ‘progressive-minded’ individuals to promote eugenics was not uncommon. Indeed, immediately following a 1917 article promoting compulsory sterilization for the ‘feeble-minded’ in the Kentucky Women's Journal (Helm, 1917) is an article encouraging Kentucky women to join the suffrage movement. In fact, eugenics was frequently framed as progressive (see Carlson, 2001; Kline, 2001) and compulsory sterilization was often promoted as being in the best interest of ‘feeble-minded’ women (General Accounting Office, 1994; see, for example, Johnson, 1917). University of Kentucky Graduate School Dean, William D. Funkhouser, argued in the Kentucky Law Journal in 1935, that ‘eugenic sterilization’ would enable feeble-minded women to live outside of institutions. In support of sterilization, Funkhouser wrote,

In the case of the girls [who are feeble-minded], it is the old and tragic story, borne out by the records of all institutions, that they usually return in a year or so with a feeble-minded baby. If sterilization were practiced, the less dangerous of the feeble-minded and insane could be allowed to live at home. The girl, even if unmarriageable, could never become pregnant (Funkhouser, 1935, p. 516).1

The global collective memory of the Nazi movement, including its use of eugenics, sustains the current extremely negative stigma of the idea of eugenics; however, many arguments regarding parity (the number of children a woman has) and poverty may echo earlier eugenic sentiments (Thomas, 1997). For example, in 1965, Daniel Patrick Moynihan published his now infamous Moynihan Report, in which he blamed poverty, and its subsequent consequences on single African-American women bearing children (Moynihan, 1965). See Quadagno (1994), Collins (1994), Neubeck and Cazenave (2001) for a fuller discussion of these issues.

In the US in the 1990s, the rhetoric continued to connect issues of race, class, poverty and births to unmarried women. For example, in his essay, ‘The Coming of the White Underclass’, Charles Murray warned, ‘But the brutal truth is that American society as a whole could survive when illegitimacy became epidemic within a comparatively small ethnic minority. It cannot survive the same epidemic among whites’ (Murray, 1998). Murray's concern is not about poverty per se but that middle class whites might reject marriage and norms requiring births within marriage, a situation that he feels America cannot survive. His warning relates to what Susan Thomas (1997) describes as the implicit assumption that when poor women stop having children, poverty and the social problems that go along with it will be alleviated. Even though studies have indicated that poor women actually have lower rates of fertility than the general population (Thomas, 1997), while social provisioning (welfare) for impoverished families in the US was being debated and revised in the 1990s, 13 states proposed laws that imposed a benefits cap for women who conceived and gave birth to a child while receiving welfare assistance (Thomas, 1998). New Jersey politician Wayne Bryant, one of the most influential advocates of fertility legislation justified this legislation by arguing that having fewer children born to women in poverty will increase the likelihood of a ‘happier, healthier society’ (Thomas, 1998). Another popular trend regarding assistance to American families in need was to offer cash incentives to women who opted for long-term or permanent birth control. By the middle of 1995, 35 states proposed financial reimbursements for women on welfare who chose to be injected with the birth control device Norplant. The South Carolina Responsible Parenting Act required that all welfare mothers be implanted with Norplant in order to remain on public assistance. Women who refused this method of birth control would not be considered eligible for any benefits, including medical benefits for their children (Thomas, 1998). The final result of social welfare federal reauthorization, which occurred in 2001, included additional funding aimed specifically at decreasing the number of out-of-wedlock births. Throughout 2003, $100 million was available for the five leading states that dramatically reduced the number of children who were born outside marriage without raising the abortion rate (Administration for Children and Families, 2003). Currently, millions of dollars are available for federal funding from the US government for ‘healthy family’ initiatives, especially ‘teaching’ impoverished women (often minority women) not to have children outside marriage, another suggestion that poor women are oversexed or, at the very least, sexually immoral.

Eugenic arguments about reproduction have not changed substantively over the years—there are those in society that should discourage from reproducing—those who are not perceived as adequately contributing to the ‘betterment’ of society. In the words of one woman, who herself was infertile, ‘I don't appreciate females having more kids than they can provide for and go on welfare … I think there should be a law of two kids on welfare only. I think there should be sterilization enforced after the 2nd child’ (May, 1998, p. 214). Poverty, inequality and childbearing are consistently perceived to be inextricably intertwined, and, we would argue, these connections might be deliberate—as demonstrated by the research and legislation presented above, and exemplified by the case of Appalachian Kentucky women, to which we now turn.

Perpetuation of eugenics ideology in Appalachian Kentucky

The same ambiguous yet sexualized understanding of ‘feeble-mindedness’ as employed in the early 20th century still holds true today in many of the stereotypes of Appalachian Kentucky poor, rural families. Similarly, other debasing stereotypes that suggest poverty, ignorance, stupidity and immorality abound, as well as interconnections among these stereotypes. Indeed, very recent examples continue to appear in the popular media. The CBS television network recently cancelled its proposed reality television show, ‘The New Beverly Hillbillies’, only after sustained protest and complaints, including from at least one senator and two congressmen. Senator Zel Miller of Georgia noted that the show will be a ‘cracker comedy’ and will ‘make fun of and demean and humiliate … hillbillies in particular and rural people in general’. In July 2004, popular late night talk-shows continued the perpetuation of stereotypes based on poverty. With regard to a new state slogan for Kentucky, suggestions included, ‘Got teeth?’ or ‘Kentucky, the first state to sanction same-sibling marriages’. Dee Davis, head of a Kentucky organization to fight stereotypes, ruefully noted, ‘The television's blaring in everyone's home all day long, and when it's inaccurate and it's hurtful, what can you do? There's this feeling of powerlessness and frustration’ (Schreiner, 2004).

This feeling of powerlessness is not simple; rather, it is deep-seated, with a long history (Billings & Blee, 1999). Moreover, it is not uncommon for individuals to have internalized that a connection between poverty and innate lack of intelligence exists. Today, individuals are characterized (or characterize themselves) as having bad ‘nerves’, and children may be identified as ‘learning disabled’ (Badagliacco & Wellman, 2005). And it is at this juncture that the picture becomes much more complex. Children are diagnosed as having mental disorders as measured by age-related functionality tests, and the process begins for individuals to apply for Supplemental Security Income (SSI) to financially support them in light of their disabilities.2

Thus, on the one hand we have a long and ongoing struggle to disentangle the issues of gender, sexuality, poverty, rurality and intelligence so as to nullify an underlying, hidden eugenics agenda. On the other hand, we find the possibility that entangling these issues may provide a safety net; perhaps even a way to survive in dire economic conditions. The question we raise here is whether future genomic research-based initiatives might reinforce reproductive social control as the SSI security net is reformed once again and impoverished women's fertility continues to be politically managed. Will unspoken eugenic politics ultimately underlie the use of (voluntary) surgical sterilization among impoverished women?

Prevalence of SSI among impoverished families

Table 1 gives an indication of the extent of the use of SSI in rural Kentucky. What can we deduce from these high rates, especially high among the most rural, most economically distressed counties? No doubt poverty exacerbates health problems. But it is also the case that the number of SSI cases may increase during distressed times. Hence, to what extent can we infer that individuals in a depressed economy might use resources available to them as a means of survival—including ‘illegal’ claims of medical conditions that might be correctible by genomic medicine, if not now sometime in the future? Is it dangerous or even prejudicial to those in need to suggest such a subversive discourse? For example, by suggesting that some families (even a small percentage) might claim that children are ‘slow’ or ‘mentally ill’ in order to be qualified to receive cash benefits, do we inadvertently support a connection between poverty, feeble-mindedness, criminality and/or immorality?

Table 1. Percentage of households receiving Supplemental Security Income for selected rural Kentucky counties

Geography	Total HHs	HH receives SSI	%SSI
United States	105539122	4615885	4%
Kentucky	1591739	114363	7%
Kentucky's rural counties
Adair County, KY	6733	822	12%
Bath County, KY	4460	589	13%
Bell County, KY	12031	1927	16%
Breathitt County, KY	6181	1347	22%
Carter County, KY	10356	1090	11%
Casey County, KY	6273	876	14%
Clay County, KY	8573	1914	22%
Clinton County, KY	4075	719	18%
Cumberland Cty, KY	2958	457	15%
Edmonson Cnty, KY	4671	577	12%
Elliott County, KY	2629	397	15%
Estill County, KY	6090	961	16%
Floyd County, KY	16869	2324	14%
Harlan County, KY	13281	2111	16%
Jackson County, KY	5310	895	17%
Johnson County, KY	9089	1065	12%
Knott County, KY	6720	1117	17%
Knox County, KY	12390	2257	18%
Lawrence Cnty, KY	5950	894	15%
Lee County, KY	3001	542	18%
Leslie County, KY	4912	911	19%
Letcher County, KY	10054	1559	16%
Lewis County, KY	5419	692	13%
McCreary Cnty, KY	6543	1221	19%
Magoffin Cnty, KY	5030	893	18%
Martin County, KY	4769	914	19%
Menifee County, KY	2523	406	16%
Metcalfe County, KY	4009	475	12%
Monroe County, KY	4725	762	16%
Morgan County, KY	4783	737	15%
Owsley County, KY	1913	508	27%
Perry County, KY	11480	1686	15%
Russell County, KY	6957	1017	15%
Wayne County, KY	7899	1305	17%
Whitley County, KY	13788	1642	12%
Wolfe County, KY	2841	536	19%
Source: Social Security Administration, Supplemental Security Record, 100 percent data (2003).

Reforms in the 1980s and 1990s, including the 1990 Supreme Court decision in Sullivan v. Zebley, expanded the reasons why children could be eligible for SSI for mental impairments to include the inability to function in age-appropriate ways, resulting in a tripling of the number of children receiving benefits. In 1996, the General Accounting Office undertook two studies at the request of the House of Representatives3 to provide information on Social Security Administration (SSA) initiatives to ‘identify and process reports of parents coaching their children in order to qualify for SSI’ (General Accounting Office, 1996b). They found that of approximately 940,000 cases, only 1,100 cases were denied due to coaching. The picture is far from clear, however. Measuring age-appropriate functioning is difficult, and, perhaps must be continually monitored and adjusted to ensure fairness as Ozawa and Hong (1999) suggest. Ozawa and Hong examined rates of the prevalence of children receiving SSI in each state for 1991 and 1995, and found that the relationship between child poverty and use of SSI is strong (as we would expect, given the eligibility requirements), but that the participation rate was higher for mental retardation than for mental illness. Using multivariate analysis, they found that while the variance explained for rates for mental retardation remained high and unchanged from 1991 to 1995 (0.71 and 0.76 respectively), for mental illness, the only significant variable in either year was the poverty rate, explaining only 25% of the variance in 1991 and 33% in 1995. In 1995, Kentucky had the highest rate of all the states for childhood mental illness participation rates in SSI.

Again, one could argue that living in poverty results in health issues that require SSI assistance. Yet, Perrin et al. (1998) in a study to determine the effects of poverty, programme generosity and health on state variations in enrolment of children and adolescents in SSI, found that ‘poverty rates accounted for 78% of the variance among states in 1989 and 53% in 1992’, while other variables accounted for very little variance. Moreover, additional research by Perrin et al. (1999) specifically examining impoverished children applying for SSI in California, Georgia, Michigan and Tennessee, found that in the 1990s ‘rates of mental health conditions other than mental retardation and Attention Deficit Hyperactivity Disorder (ADHD) increased 63%; rates of mental retardation decreased 29%, while rates of ADHD increased almost 3-fold.’

In our examination of the SSI Public-Use Microdata File, of children receiving SSI benefits in December 2001, we also find that nationally children were more likely to have diagnoses of mental retardation or mental disorders (approximately 50% to 70% combined totals) than to be physically disabled or blind. In Kentucky, 70% of children receiving SSI are so diagnosed.

We are left with a troubling question: why are poor children suffering from mental disorders and a lack of age-appropriate functioning? And why does the rural South have the highest rates, as the GAO found (General Accounting Office, 1996a)? Is it possible that another eugenic discourse could be one of the consequence of future genomic ‘assistance’—to rid rural Kentucky of mental illness and life-threatening diseases rather than to alleviate poverty?

Government checks in Kentucky are frequently referred to as ‘crazy checks’, and it is not difficult to meet people who have received ‘crazy checks’ most of their lives (Cheeves, 2002). In this context, the idea that someone may be ‘crazy’ or ‘learning disabled’ prevails. One might argue that at least there is some mechanism for securing social support when little other social support is available, but at what future personal and societal costs? In Badagliacco's study (1999) of severely impoverished mothers with children, it was not uncommon to find children labelled disabled (usually learning disabled) and sometimes this provided the only basis for claims to support that helped the family survive in desperate circumstances. One homeless family reported having two sons receiving SSI because they were learning disabled; their mother also received SSI for, in her words, ‘having bad nerves’. She brought out a tray of medicines prescribed to help her cope. The family of five received more than $1,500 in monthly SSI income but no other support, and were unable to remain housed. They did not have sufficient funds for food for the entire month because they were deeply in debt, having three outstanding loans with very high interest rates, and were at risk of losing their 15-year-old van to repossession.

Complexities of poverty, childbearing and sterilization

At the same time that mothers assert their own agency of strategizing how to receive some government assistance without being on the welfare rolls, they were also sometimes subjected to the persuasion of the promise of a better life if they simply did not have additional children. Thus, Badagliacco (1999) found that among the homeless women she interviewed in Appalachian Kentucky, few felt they had much choice in determining their future fertility. They stated that they could not easily acquire reversible birth control methods because they did not have the cash and/or the health insurance. Badagliacco found that 92% of the women were very familiar with surgical sterilization and had had it suggested to them that they ‘probably wanted’ sterilization in order to be able to better provide for their children. On the other hand, when asked, 40% reported wanting additional children in the future. The average age of these women was 27 years and their desire for additional children would not have seemed at all unreasonable, if they were better able to care for the children they had already. Therefore, as these women strategize about how to strengthen their families, they run the risk of being persuaded to undergo a medical procedure they might not want or need. Indeed, we might speculate that few white, middle class women aged 27 would have received a suggestion from a health provider to choose sterilization unless there was some medical (as opposed to social) need. Table 2, based on Badagliacco's study, suggests that severely impoverished women are less likely than other US women to use reversible methods of birth control, especially the birth control pill.4

Table 2. Familiarity with and use of contraceptive methods

	Homeless women		American women
Method	Percent familiar^1	Percent use^1	Percent familiar^2,3
Condom	95	47	81
Contraceptive pill	90	19	76.2
Douching	87	41	n/a
Withdrawal	84	18	39.1
Female sterilization	92	36	22.4
Foam	63	10	n/a
Male sterilization	62	0	13.4
Suppository, insert	62	6	n/a
Spermicidal jelly	58	2	n/a
Rhythm method	71	12	23.7
Diaphragm	67	0	n/a
Today sponge	63	5	n/a
IUD/Coil/Loop	56	2	n/a
Depo Prevera	58	0	2.1
N of cases	86	86	10,847
Notes:
1. Source: original data collected by Badagliacco in rural Kentucky, 1999.
2. Source: National Survey of Family Growth Cycle 5 (1995).
3. Not all questions were asked in NSFG; N.B. Women were asked to mention as many methods as they knew or used, so columns do not sum to 100%.

It is consistent with national statistics to find that women are knowledgeable regarding tubal ligations and had acquired that knowledge from contact with a medical provider.5 Brown (1999) found that women who were counselled by a medical provider regarding tubal ligation were nine times more likely to use that birth control method (p ≤ 0.001). Moreover, women whose incomes fell below $25,000 per year were more likely to be counselled by a medical provider about a tubal ligation. Of course there is a general relationship between being counselled on a medical procedure and actually using the procedure, but the income effect (as presented in Tables 3 and 5) in this case is worth noting.

Table 3. Counsel for tubal ligation by income level

Received counsel for tubal ligation	Income level							Total
	$7,000 to $9,999	$10,000 to $14,999	$15,000 to $19,999	$20,000 to $24,999	$25,000 to $34,999	$35,000 to $49,999	$50,000 or above
	Yes	29.4%	24.0%	25.9%	22.2%	23.9%	23.2%		19.6%	23.0%
No	70.6%	76.0%	74.1%	77.8%	76.1%	76.8%	80.4%	77.0%
Total	100.0%	100.0%	100.0%	100.0%	100.0%	100.0%	100.0%	100.0%
p < 0.001	N = 470	N = 776	N = 866	N = 818	N = 1514	N = 1841	N = 2159	N = 9422
Source: National Survey for Family Growth, Cycle 5 (1995).

Table 4. Tubal ligation by income level

Tubal ligation	Income level							Total
	$7,000 to $9,999	$10,000 to $14,999	$15,000 to $19,999	$20,000 to $24,999	$25,000 to $34,999	$35,000 to $49,999	$50,000 or above
	Yes	31.3%	27.8%	25.7%	22.8%	22.2%	19.8%		16.2%	22.1%
No	68.7%	72.2%	74.3%	77.2%	77.8%	80.2%	83.8%	77.9%
Total	100.0%	100.0%	100.0%	100.0%	100.0%	100.0%	100.0%	100.0%
P ≤ 0.001	N = 434	N = 720	N = 808	N = 754	N = 1408	N = 1608	N = 1928	N = 8600
Source: National Survey for Family Growth, Cycle 5 (1995).

Table 5. Forward conditional logistic regression of tubal ligation by significant independent variables

Variables	B	S.E.	Odds radio
Family income	–0.116***	0.017	0.891 (1.21)
Race (0 = white, 1 = non-white)	0.474***	0.079	1.606
Counsel (0 = no, 1 = yes)	2.231***	0.068	10.182
Married (0 = never, 1 = ever)	0.728***	0.108	2.071
Region (0 = other, 1 = South)	0.420***	0.070	1.522
Age	0.090***	0.006	1.095
Number of pregnancies	0.225***	0.020	1.253
Years of education	–0.145***	0.014	0.865 (1.16)
Constant	–4.198***	0.250	0.015
N = 10,847	***p ≤ 0.001
Source: National Survey for Family Growth, Cycle 5 (1995).

In addition, examination of the relationship between family income and sterilization indicates that a higher percentage of low-income women are more likely to report tubal ligations. While the differences in the percentages are not startling, these results reveal an interesting trend, especially in view of the findings of Nyamathi et al. (2000), whose research revealed that impoverished women are less likely than other women to seek medical care. Badagliacco (1995) also found that many of the Kentucky homeless women she interviewed either refused or could not afford medical assistance for themselves, using it only when necessary for the well-being of their infants. Many of these women used a medical assistance card only when giving birth to their children, obtained the tubal ligation information during pregnancy, and had the actual tubal ligation shortly after childbirth. Thus, women who are poor are less likely to see a doctor, but they are more likely to be counselled by a medical provider about sterilization and have undergone a sterilization procedure than their wealthier counterparts.

The decision to have a tubal ligation is a complicated one, involving many factors (see Brown, 1999; Chandra, 1998; Godecker et al., 2001). Table 5 presents our findings from the National Survey of Family Growth (NSFG), Cycle 5 (1995). In our analysis of the prevalence of tubal ligation, we included the respondent's age, age of mother at first birth, parity, religious influence, race, income, education, region of the country, counsel from a medical provider, ever married, and number of pregnancies, running a forward conditional logistic regression on the NSFG data. The results indicate, as we would expect, that having been counselled by a medical provider regarding tubal ligation and marriage history were the strongest predictors of the likelihood of having a tubal ligation. However, as with the two-way tabular analyses presented above, the logistic regression shows an inverse relationship between income and tubal ligation—the lower the respondent's income, the greater the likelihood that she had been surgically sterilized.

The issues involving tubal ligation are, perhaps, too complex to make any generalizations from these findings, but there appears to be a positive relationship between poverty and the likelihood of having a tubal ligation. In view of the interconnections between societal and self definitions of ‘disabled’ or ‘mentally impaired’, it is imperative that this relationship be further analysed.

Discussion

It is important to question the role medicine may play in maintaining inequality in American social structure. Medicine and science, as in genomic research, is often framed as being value neutral and morally objective and, as Zola (1971) points out, is perceived as ‘existing in a domain of absolute truth’. However, as Ehrenreich and Ehrenreich (1974) reminded us, medicine cannot be accurately cast as existing outside a capitalistic social structure, nor, as Waitzkin (1983) and others have cautioned, can a patient–doctor relationship be perceived as existing outside a cultural/historical context (Kelly, 2003; Huniche, 2003; Wakefield & Poland, 2005). Thus, with regard to women's reproductive health, social scientists continue to investigate and expose some of the inequality in the social realities of new reproductive and genomic technology and prenatal diagnoses—(see for example, Duden, 1993; Lorber, 1988; Petchesky, 1987; Rapp, 1988, 1990; Rothman, 1988; Schwartz, 1994). For example, the interaction between health care provider and patient is based upon an unequal form of intimacy in that the patient is required to remove her clothing, and to give intimate, personal details regarding her life, thus placing her in a position of vulnerability.

Yet how much more vulnerable is the woman if she is unaccustomed to speaking with those with higher social status? How much more vulnerable is the woman if she might not understand all that is said especially if medical terms are used? How much more vulnerable is the woman if she perceives prejudice, or is made to feel or feels inferior, inadequate, immoral and poor? How vulnerable is she if she already has a child receiving SSI for ‘age-inappropriate functioning’ or mental disorder? These interactions are also influenced by the perceived authority of the medical provider; the greater the degree of social distance between the patient and the medical provider, the more authority the medical provider is perceived as having. Some women are able to oppose the dominant medical discourses about their bodies, as Martin (1987), and Collins (1994) found, not all women are able to achieve control over their own reproductive lives.

Moreover, behaviours such as alcoholism, obesity, fertility, hyperactivity, mothering and depression are all subjected to medical scrutiny, and taking what might be considered social situations out of the realm of law, religion or couple decision-making, and placing them more prominently within the realm of medicine may give a more humanitarian and value-free impression of the way in which deviant individuals can be treated, while perhaps alleviating a societal responsibility towards the individual. Thus, if ‘mental illness’ is seen as transmitted intergenerationally, what is the future proscription for how to deal with impoverished women whose children are mentally ill and receive SSI? If the accountability for a child's ‘learning disability’ or age-appropriate functioning is removal from public situations (e.g. early pre-school education, health care, public schools) to the individual family, then an important goal becomes an attempt to change individuals and behaviour rather than the social structure Gerhardt (1989). Of course, some familial behaviour change may be warranted, but social provision is also necessary.

Simmel (1908) discussed the idea that poverty is understood by the social reaction to it, not by a quantitative measure. When the poor begin to receive assistance they are often lumped together in a stratum of the poor or lower class, and/or gendered and racial groups, for example, ‘single black mothers’. He argued that this stratum is held together not by interactions with impoverished individuals, but rather by the attitude with which society perceives them. Historically, eugenics provided a clear divide between an ‘acceptable’ race of people and an ‘unacceptable’ one, with the acceptable race being those who move the nation forward, perpetuating the ‘us versus them’. The results of this divide, in its extreme form, led to some serious consequences for women with compulsory sterilization.

These consequences served to reify what Collins (2001, p. 18) describes as the ‘American national family’ and the perception of the poor as being harmful to the nation-state. Furthermore, the separation of fit versus unfit, along with scientific backing to both define and deal with the unfit, begins to racialize the poor, even when the colour of the impoverished Appalachian woman is white. Arguably the social policies that target marginalized groups in society, such as a eugenics movement, posit members of these groups as ‘foreigners’ under dominant nationalist ideology. Judging by past social practices and, perhaps, present or future scientific policies, one purpose of dominant nationalist ideology in shaping social policy may be not to alleviate hardship, but rather to perpetuate itself.

In addition, research by Kerr et al. (1998) reveals that contemporary British health care practitioners in the field of genetics tend to diminish or misrepresent the role of genetics in the eugenics movement. The geneticists interviewed by the authors expressed five different themes in their defence of ‘new genetics’. Geneticists reported eugenics as being unscientific, technically unachievable, occurring only under totalitarian regimes to oppress rather than assist, and finally, they felt eugenics involved changing the human gene pool, while ‘new genetics’ seeks only to diagnose and treat disease. However, a substantial body of research shows that in its heyday, eugenics was not considered ‘bad science’ and the movement included many distinguished scientists from a variety of fields. In fact, many statistical and mathematical formulas that emerged from the eugenics movement are still used today (Mackenzie, 1978; Harwood, 1989; Carlson, 2001). In addition, rather than being limited to totalitarian regimes, eugenics received widespread support from many Western democracies, which led, for example, to the endorsement of compulsory sterilization and birth control previously mentioned. Moreover, respondents interviewed by Kerr et al. (1998) were very vague with regard to which diseases could or would be diagnosed and cured using ‘new genetics’, as well as what might constitute individual choice and informed consent. The researchers found that geneticists tended to easily dismiss eugenic concerns surrounding new genetic research while accepting a limited number of ethical concerns which they justified through individual choice.

The overall results from Kerr et al. (1998) indicate that professional accounts of the neutrality of science, the dynamics of individual choice and the potential misuse of genomic science can leave some concern as to whether or not ‘new genetics’ might be positioned to further perpetuate inequality and stigma. With this in mind, it becomes even more important to place individual rights above the value of medical research. One way to accomplish this feat is to understand the cultural, social, economic and political backgrounds of the patients they are treating.

This article attempts to raise questions about the interconnections between impoverished women, the progression of science in genomic research, and the rights and experiences of their reproductive health care. We are not attempting to make definitive statements about the current situation but rather are asserting a warning that in an effort to improve some lives, genomic policies might hinder other individuals and families. One could argue that poor women are choosing surgical sterilization in order to control their own destiny, to oppose the dominant medical discourse—to be able to care for the children they already have. Yet, they remain in poverty nonetheless, suggesting that there is much more to the picture than the reproductive agency of poor women. Examination of ideologies supporting who is fit to reproduce and how genomic research might influence the health provider–client relationship among the impoverished is extremely important, especially in view of our preliminary findings. We argue that the issues are very complex and multi-layered, and call for scholars, feminist scholars especially, to further this necessary research agenda in a way that would better address some of these issues.

Acknowledgements

An earlier version of this paper was presented at the 54th annual meeting of the Society for the Study of Social Problems, San Francisco, CA, 13 August 2004.

Notes

1. It should be noted that in the same Kentucky Law Journal (Vol. 23, 1935), Robert E. Hatton makes the case (pp. 517–27) that feeble-mindedness is not inherited and that sterilization ‘is woefully inadequate to cope with the situation [of feeble-mindedness]’. He claims not to offer a substitute, but, alas, he ends the article with the comment, ‘it might well be argued that our immigration laws would stand a rather close scrutiny in connection with the increasing numbers of mental incompetents’ (p. 527).

2. The SSI programme provides cash benefits to disabled children who live with families with low income and limited resources.

3. The GAO attributes the request for information to then Rep. Blanch Lambert Lincoln, Democrat, AK.

4. Readers are cautioned that this table is presented merely for information and should not be regarded as necessarily generalizable to other sub-populations of impoverished women

5. In this context, ‘medical providers’ includes physicians, physician assistants, nurses, health care counsellors, and other similarly licensed health practitioners.