Health inequities and social justice. The moral foundations of public health.

Recently we argued that social justice is concerned with human well-being, which is best understood as involving plural, irreducible dimensions, each of which represents something of independent moral significance. Health is one of these distinct dimensions of well-being, as is personal security, the development and exercise of cognitive capacities for reasoning, living under conditions of social respect, developing and sustaining deep personal attachments, and being able to lead self-determining lives. In this paper, we address why considerations of justice, and not utilitarian aims as applied narrowly to health outcomes, are most foundational to public health. In particular, we argue that the aspiration for improvement of the health of populations defines the positive aim of justice in public health, along with the negative aim of reducing or combating systematic disadvantage that affects adversely historically situated social groups and, more generally, children across the normal life span when their well-being is not assigned a special priority in the development of public health policies.

Lessons from the failure of human papillomavirus vaccine state requirements.

The licensure in 2006 of a vaccine against the subtypes of human papillomavirus (HPV) responsible for the majority of cervical cancers and genital warts was heralded as a watershed moment for vaccination, cancer prevention, and global health. A safe and effective vaccine against HPV has long been viewed as an enormous asset to cervical cancer prevention efforts worldwide. This is particularly true for places lacking robust Pap screening programs where cervical cancer has the greatest prevalence and mortality. Well before its licensure, however, some observers noted significant obstacles that would need to be addressed in order for an HPV vaccination program to succeed. These included the vaccine's relatively high cost, availability, and opposition from socially conservative groups. Such concerns associated with the implementation of HPV vaccination were soon overwhelmed by the furor that followed the unexpectedly early efforts by the US state governments to require the vaccine as a condition of attendance in public schools, proposals imprecisely referred to as "mandates." In this study, we review the controversy surrounding this debate and its effects on important ethical and public health issues that still need to be addressed.

How patients experience progressive loss of visual function: a model of adjustment using qualitative methods.

BACKGROUND: People with retinitis pigmentosa (RP) experience functional and psychological challenges as they adjust to progressive loss of visual function. The authors aimed to understand better the process of adjusting to RP in light of the emotional suffering associated with this process. METHODS: Adults with RP were recruited from the Foundation Fighting Blindness and the Wilmer Eye Institute in Baltimore. Focus groups and semistructured interviews addressed the process of adjusting to RP and were audiotaped and transcribed. The transcripts were analysed qualitatively in order to generate a model of adjustment. RESULTS: A total of 43 individuals participated. It was found that, on diagnosis, people with RP seek to understand its meaning in their lives. Mastering the progressive functional implications associated with RP is contingent upon shifting personal identity from a sighted to a visually impaired person. In this sample, six participants self identified as sighted, 10 self identified as in transition, and 27 self identified as visually impaired. This adjustment process can be understood in terms of a five stage model of behaviour change. CONCLUSIONS: The proposed model presents one way to understand the process of adjusting to RP and could assist ophthalmologists in meeting their moral obligation to lessen patients' suffering, which arises in the course of their adjustment to progressive loss of visual function.

The ethics of aggregation and hormone replacement therapy.

The use of aggregated quality of life estimates in the formation of public policy and practice guidelines raises concerns about the moral relevance of variability in values in preferences for health care. This variability may reflect unique and deeply held beliefs that may be lost when averaged with the preferences of other individuals. Feminist moral theories which argue for attention to context and particularity underline the importance of ascertaining the extent to which differences in preferences for health states reveal information which is morally relevant to clinicians and policymakers. To facilitate these considerations, we present an empirical study of preferences for the timing and occurrence of health states associated with hormone replacement therapy (HRT). Sixteen women between the ages of 45 and 55 were enrolled in this pilot study. Their preferences regarding five health states associated with HRT (menopausal symptoms. side effects of HRT, breast cancer, myocardial infarction, and osteoporosis) were assessed in quantitative terms known as utilities. Two standard methods, the visual analog scale (VAS) and the standard gamble (SG), were used to assess utility and time preference (calculated as a discount rate). The wide variability of responses underlines the importance of tailoring health care to individual women's preferences. Policy guidelines which incorporate utility analysis must recognize the normative limitations of aggregated preferences, and the moral relevance of individual conceptions of health.

Evaluation of a smoking cessation intervention for pregnant women in an urban prenatal clinic.

A smoking cessation and relapse prevention intervention was tested in an urban, prenatal clinic serving predominantly low-income, African-American women. At their first prenatal visit, 391 smokers were randomly assigned to an experimental (E) group to receive usual clinic information plus a prenatal and postpartum intervention or to a control (C) group to receive only usual clinic information. The intervention consisted of individual skills instruction and counseling by a peer health counselor on the use of a self-help cessation guide and routine clinic reinforcement. Among the E group (n = 193), 6.2% were cotinine-confirmed quitters at third trimester and among the C group (n = 198) the quit rate was 5.6%. Quitters were light smokers at entry into prenatal care. Many had tried to quit smoking at least once prior to pregnancy.

Women's disclosure of HIV status: experiences of mistreatment and violence in an urban setting.

Women represent an increasing proportion of AIDS cases and anecdotal reports suggest some face substantial risks when others learn they are HIV-positive. The purpose of this paper is to describe women's fears and experiences regarding disclosure of their HIV status. Fifty HIV-positive women, ages 16-45 from urban teaching hospital outpatient clinics, were interviewed using an in-depth, qualitative interview. Eighty-six percent of the women were African American and 56% were current or former IVDU. At the time of the interview, 88% of the women had known their HIV status for a year or more. All but one woman had disclosed her HIV status to at least one person and 82% had disclosed to multiple people. Although two-thirds of the women had been afraid to disclose to others because of concerns about rejection, discrimination or violence, three-quarters of the sample reported only supportive and understanding responses to their disclosure. One-quarter of the sample reported negative consequences of disclosure, including rejection, abandonment, verbal abuse and physical assault. Disclosure-related violence was discussed by nine women (18%): two who feared violence were relieved to find a supportive response; four chose not to disclose their status because they feared violence; and three women were verbally or physically assaulted. Fear of mistreatment figured prominently in decisions about disclosure among this sample. That many women found supportive and understanding responses is encouraging. However, there were sufficient examples of negative consequences, including violence, to suggest individualized approaches to post-test counseling, enhanced support services for HIV-positive women, and public education to destigmatize HIV-disease.

US medical researchers, the Nuremberg Doctors Trial, and the Nuremberg Code. A review of findings of the Advisory Committee on Human Radiation Experiments.

The Advisory Committee on Human Radiation Experiments (ACHRE), established to review allegations of abuses of human subjects in federally sponsored radiation research, was charged with identifying appropriate standards to evaluate the ethics of cold war radiation experiments. One central question for ACHRE was to determine what role, if any, the Nuremberg Code played in the norms and practices of US medical researchers. Based on the evidence from ACHRE's Ethics Oral History Project and extensive archival research, we conclude that the Code, at the time it was promulgated, had little effect on mainstream medical researchers engaged in human subjects research. Although some clinical investigators raised questions about the conduct of research involving human beings, the medical profession did not pursue this issue until the 1960s.

Educating patients about cystic fibrosis carrier screening in a primary care setting.

OBJECTIVE: To assess the effectiveness of education about cystic fibrosis carrier screening in a primary care setting. DESIGN: Participants were asked to read a brochure, and were offered cystic fibrosis carrier screening. They were assessed for knowledge after reading the brochure and again after having an opportunity to ask questions and reread the brochure at home, at which time consent for testing was obtained. SETTING: Two sites of a health maintenance organization in the Baltimore, Md, area. PARTICIPANTS: Enrollees in a health maintenance organization aged 18 to 44 years. Of 608 enrollees approached, 477 completed an initial knowledge questionnaire, and 143 consented to testing. MAIN OUTCOME MEASURE: Change in knowledge score. RESULTS: Knowledge scores improved from a mean of 69% correct initially to 75% at the time of consent (P < 0.1, Student's paired t test). When participants were stratified by educational attainment, significant improvement was observed only for participants with no more than a high school education. However, their final knowledge score was significantly lower than that of college graduates. CONCLUSIONS: For people with more formal education, printed materials augmented by a chance to ask questions may be sufficient to ensure informed consent. For less well-educated persons, additional education may be necessary to ensure understanding of difficult concepts.

Violence by male partners against women during the childbearing year: a contextual analysis.

OBJECTIVES: Many contextual analyses that bridge the micro-level-macro-level gap in identifying risk factors for adverse outcomes have not used methods appropriate for multilevel data. The purpose of this paper is to illustrate the application of appropriate multi-level analytic methods and discuss their implications for public health. METHODS: A previously published individual-level model of physical violence perpetrated by male partners during the childbearing year was reanalyzed to include variables describing the neighborhoods where the women resided. Logistic regression with estimation methods of the generalized estimating equation was used for the contextual analysis. To assess the advantages of the generalized estimating equation over conventional logistic regression, both were used for the two-level model. RESULTS: The regression coefficients from the contextual model differed from the betas obtained in the individual-level model. Not only were neighborhood-level variables related to the risk of partner-perpetrated violence, but the presence of these macro-level variables in the models modified the relationships of the individual-level variables to the risk of violence. CONCLUSIONS: Two-level models that include individual- and community-level factors may be beneficial for purposes of explanation in public health research.

In-home injury prevention practices for infants and toddlers: the role of parental beliefs, barriers, and housing quality.

The present research was designed to contribute to the empirical literature on the scope and determinants of parents' injury prevention practices among families living in disadvantaged, urban areas. One hundred fifty mothers were interviewed about their living environment when they brought their children (ages 6-36 months) to a hospital-based, pediatric primary care clinic. Only 37% of respondents reported that they knew their hot water temperature was 125 degrees or less. A majority (59%) of families reported that they did not use stair gates. More than one fourth (27%) of respondents said they did not have smoke detectors. Mothers uniformly reported very favorable attitudes and beliefs and strong support from others for in-home injury prevention practices. Factors significantly associated with the number of injury prevention practices implemented were family income, housing quality, and environmental barriers. Instead of attempting solely to persuade parents about the value of injury prevention practices, skill-based interventions are needed to help parents overcome specific barriers that result from living in substandard housing and having very limited financial resources.

Long-term effects of ethics education on the quality of care for patients who have do-not-resuscitate orders.

OBJECTIVE: To assess the long-term clinical impact of a broad-based ethics education program for medical houseofficers with specific emphasis on appropriate care for patients who have do-not-resuscitate (DNR) orders. DESIGN: Prospective, with an initial randomized phase. SETTING: The medical service of a university teaching hospital. PARTICIPANTS: Medical houseofficers and their inpatients. INTERVENTIONS: A pilot program in 1988, and a full program with a two-year curricular cycle from 1989 to 1991. MEASUREMENTS AND MAIN RESULTS: The authors measured compliance with specific standards of care by reviewing charts of patients who had DNR orders at baseline (n = 39, 1988), after the pilot phase (n = 57, 1989), and at the end of the first curricular cycle (n = 56, 1991), noticing who wrote the DNR order, whether the reasons for the order and appropriate consent were documented, and whether there was documented attention to any of 11 concurrent care concerns (CCCs), such as spiritual needs, the appropriateness of tube feedings or pressors, and adjustment of analgesic dose. The percentage of DNR orders written by houseofficers increased from 26% in 1988 to 67% in 1991 (p < 0.01). The percentage of charts documenting the rationale and consent for the DNR order was consistently high. The percentage of charts documenting attention to any CCC increased from 68% in 1988 to 86% in 1991 (p < 0.01). The mean number of CCCs addressed per DNA order increased from 1.34 in 1988 to 2.14 in 1991. The mean number of CCCs addressed per DNR order for patients who had AIDS increased from 0.89 in 1988 to 2.25 in 1991 (p = 0.03). CONCLUSIONS: The quality of care for patients who had DNR orders, both overall and for those who had AIDS, improved over long-term observation in the setting of an ethics education program for medical houseofficers. The results suggest that ethics education may alter physician practices and improve patient care.

Offering cystic fibrosis carrier screening to an HMO population: factors associated with utilization.

We offered cystic fibrosis (CF) carrier testing to reproductive-age enrollees in an HMO, in order to determine factors associated with test utilization in a primarily nonpregnant population. Male and female enrollees either were mailed an invitation to have the test after attending an educational session (N = 2,713) or were approached in waiting rooms at the HMO sites and given the opportunity to have the test without making an additional visit (N = 608). Uptake was considerably higher when testing could be obtained without making an additional visit (23.5%) than when attendance at an educational session was required as a prerequisite for having the test (3.7%). Utilization was higher among respondents who were planning children. Caucasians, and those with higher educational attainment. Among respondents planning to have children, individuals with higher tolerance for test uncertainty, lower fear of stigma, and higher perceived risk of being a carrier were significantly more likely to have the test. Testing decisions were not associated with the perceived burden of a child with CF or with the likelihood of aborting for CF. Although utilization of CF carrier testing is relatively low among nonpregnant individuals, uptake is significantly higher when testing can be obtained with minimal effort. Factors associated with the decision to be tested had more to do with implications of being a carrier per se than with the concerns of having a child with CF.

Interpersonal conflict and physical violence during the childbearing year.

Reducing physical abuse directed at women by male partners is one of the nation's Year 2000 health objectives. An important target group for achieving this health objective is pregnant women. The present study examines the frequency, severity, perpetrators and psychosocial correlates of violence during the childbearing year. A panel of 275 women were interviewed 3 times during pregnancy and at 6 months postpartum. Moderate or severe violence was somewhat more common during the postpartum period than during the prenatal period--19% of women reported experiencing moderate or severe violence prenatally, compared to 25% in the postpartum period. For partner-perpetrated violence, being better educated was associated with increased risk of violence as was having had a sex partner who ever shot drugs; being older, having a confidant and having social support from friends were significant protective factors. For violence perpetrated by someone other than a male partner, having a confidant was a significant protective factor. Obstetric care providers who routinely come in contact with pregnant women, as well as emergency department staff, need to be systematically screening for violence against women. Efforts to enhance women's social support networks should be included in primary and secondary prevention programs.

Attitudes of physicians and genetics professionals toward cystic fibrosis carrier screening.

With the identification of the cystic fibrosis (CF) gene and its major mutations in 1989, there has been considerable debate among health professionals as to whether population-based carrier testing should be instituted. This paper presents the results of a survey to determine the attitudes of physicians and genetics professionals toward CF carrier testing. Factors associated with differences in attitudes also were examined. A questionnaire was mailed to primary care physicians and psychiatrists in 10 states who graduated from medical school between 1950 and 1985. For comparison, medical geneticists and genetic counselors in the same states also received the questionnaire. A total of 1,140 primary care physicians and psychiatrists (64.8%) and 280 medical geneticists and genetic counselors (79.1%) responded. Although 92% of respondents believed that a couple should be tested after asking about a test that detected 80% of carriers, only 43.9% of respondents believed such a test should be offered routinely. Those specialists most likely to have been involved in genetic services were most opposed to routine screening. The most important reason reported for opposition to routine screening was the consequences of an 80% detection rate. When presented with a hypothetical "error-free" test, 75.9% of respondents favored routine testing. Our findings suggest that there was little support for routinely offering the CF carrier test available at the time of this study among the physicians and professionals most involved in the provision of genetic services.

Women's protective sexual behaviors: a test of the health belief model.

Heterosexual transmission of the human immunodeficiency virus (HIV) has become a significant health issue for women. The present study describes the extent to which a sample of women from an urban area report making efforts to protect themselves from becoming infected with HIV through several protective sexual behaviors. Secondly, we assess the extent to which adoption of these protective behaviors can be explained by health beliefs and previous HIV testing. Forty-nine percent of the sample reported having used a condom in the past year because of fear of AIDS and 48% reported having carried condoms. Women in this sample perceived themselves to be moderately susceptible to AIDS and they were well aware of the severity of the disease. Women tended to think that protecting themselves from AIDS would not be overly burdensome and that the recommended sexual protective behaviors were highly effective for preventing AIDS. Messages about the severity of AIDS and the effectiveness of protective sexual behaviors seem to be reaching women. Beliefs about personal susceptibility were consistently associated with the adoption of multiple protective behaviors, suggesting that messages emphasizing the ubiquity of risk, especially in demographically high-risk populations, may be particularly appropriate and effective.

PIP: The health belief structures that distinguish women who use condoms to protect themselves from themselves from the human immunodeficiency virus (HIV) and those who fail to take protective measures were investigated in a survey of 573 heterosexual women enrolled during their first prenatal visit to the Johns Hopkins Hospital Obstetrical Clinic. 90% of study subjects were African Americans, only 11% were currently married, and 65% were under 25 years of age. The proportions of respondents who had adopted any of the following 6 protective measures in the past year due to a fear of getting acquired immunodeficiency syndrome (AIDS) was the following: had fewer sexual partners (62%), had sex less often (48%), talked with a sex partner about AIDS (72%), decided to refuse sex because of concern a partner might be HIV-positive (47%), used condoms (49%), and carried condoms (48%). On the basis of the Health Belief Model of Janz and Becker, respondents were then questioned on their perceptions of susceptibility to AIDS, severity of the disease, barriers to condom use, and benefits of protected sex. Their mean scores on the preceding subscales, out of a maximum of 5.0, were 3.19, 4.08, 2.18, and 3.75, respectively. After adjusting for demographic factors and number of high-risk life-style practices, multiple regression analysis was used to determine the importance of these health beliefs to protective sexual behaviors. Beliefs about susceptibility and barriers emerged as the most significant correlates and were associated with having sex less often, deciding not to have sex, and carrying condoms. Condom use in the past year was correlated with beliefs about susceptibility, severity, and barriers. Overall, the findings suggest that women are motivated by feelings of personal susceptibility to try protective behaviors, but then conclude they are burdensome and discontinue.

Verbal abuse and physical violence among a cohort of low-income pregnant women.

We report on the occurrence of verbal abuse and physical violence during pregnancy for 358 low-income women. Overall, 65% of the women in our study experienced either verbal abuse or physical violence during their pregnancies. Twenty percent of the women in our sample experienced moderate or severe violence. Perpetrators, although primarily male partners, included family members and friends. These rates varied by age, with younger women experiencing significantly higher rates of verbal abuse and physical violence. There was no association between verbal abuse or physical violence and birth weight or gestational age. Prenatal care may be one of the only opportunities that women, and especially disadvantaged women, may have to get proper assistance with domestic violence. We conclude that enhanced screening, counseling, and referral by obstetricians and other health care providers are some of the immediate activities that could be implemented in prenatal care settings to address the compelling problems of violence during pregnancy.

PIP: This study examines the frequency, perpetrators, and impact of verbal abuse and physical violence among low-income pregnant women. A cohort of 358 low-income pregnant women attending the Johns Hopkins Hospital Adult Obstetric Clinic between December 1989 and September 1990 were included in the study. Information gathered through interview and descriptive analysis revealed that 65% of the women experienced verbal abuse and physical violence during pregnancy; 20% had been through moderate to severe violence. Violence was primarily inflicted by male partners and also by other family members and friends. Moreover, the occurrence of verbal abuse and physical violence were significantly higher among younger aged women, but no association was noted between violence and birth weight and gestational age. Due to the fact that prenatal care may be the only opportunity for low-income women to obtain medical assistance and referral services, prenatal care should include enhanced screening, counseling, and good referral by obstetricians and other health providers in order to address this problem.