Gail E. Henderson

Clinical Trials and Medical Care: Defining the Therapeutic Misconception

A key component of informed consent to participate in medical research includes understanding that research is not the same as treatment.

Recommendations for Returning Genomic Incidental Findings? We Need to Talk!

The American College of Medical Genetics and Genomics recently issued recommendations for reporting incidental findings from clinical whole-genome sequencing and whole-exome sequencing. The recommendations call for evaluating a specific set of genes as part of all whole-genome sequencing/whole-exome sequencing and reporting all pathogenic variants irrespective of patient age. The genes are associated with highly penetrant disorders for which treatment or prevention is available. The effort to generate a list of genes with actionable findings is commendable, but the recommendations raise several concerns. They constitute a call for opportunistic screening, through intentional effort to identify pathogenic variants in specified genes unrelated to the clinical concern that prompted testing. Yet for most of the genes, we lack evidence about the predictive value of testing, genotype penetrance, spectrum of phenotypes, and efficacy of interventions in unselected populations. Furthermore, the recommendations do not allow patients to decline the additional findings, a position inconsistent with established norms. Finally, the recommendation to return adult-onset disease findings when children are tested is inconsistent with current professional consensus, including other policy statements of the American College of Medical Genetics and Genomics. Instead of premature practice recommendations, we call for robust dialogue among stakeholders to define a pathway to normatively sound, evidence-based guidelines.Genet Med 15 11, 854–859.Genetics in Medicine (2013); 15 11, 854–859. doi:10.1038/gim.2013.113

HIV/AIDS Risk Among Brothel-Based Female Sex Workers in China: Assessing the Terms, Content, and Knowledge of Sex Work

Background: Sexual transmission of HIV in China is rapidly increasing, in part driven by commercial sex work. Goal: This article examines variations in occupational control among one type of brothel-based prostitutes in China, and the relationship between the terms and content of this work and the risk of HIV/AIDS. Organizational factors are discussed as part of the current political, economic, and social context of sex work in China. Study: The analysis is based on ethnographic observation and in-depth interviews conducted in south China in 2000 and 2001 involving 158 female prostitutes from 45 brothels in 4 red light districts. Qualitative analysis of interview and observational data used development of thematic codes measuring occupational control. Results: Brothel-based female sex workers in China are a heterogeneous population, displaying considerable variability in the organization of life and work, relationships with managers and clients, ability to negotiate condom use, knowledge of sexually transmitted diseases and HIV, and occupational identity, all of which may result in different risks of acquiring HIV. Conclusion: HIV prevention activities in China must focus on sociocultural aspects of sex work. Such interventions depend on detailed knowledge of its organization. The results of this study demonstrate the importance of prevention activities directed at the brothel managers and clients, as well as the sex workers.

Surplus men, sex work, and the spread of HIV in China

While 70% of HIV positive individuals live in sub-Saharan Africa, it is widely believed that the future of the epidemic depends on the magnitude of HIV spread in India and China, the worlds most populous countries. Chinas 1.3 billion people are in the midst of significant social transformation, which will impact future sexual disease transmission. Soon approximately 8.5 million ‘surplus men’, unmarried and disproportionately poor and migrant, will come of age in Chinas cities and rural areas. Meanwhile, many millions of Chinese sex workers appear to represent a broad range of prices, places, and related HIV risk behaviors. Using demographic and behavioral data, this paper describes the combined effect of sexual practices, sex work, and a true male surplus on HIV transmission. Alongside a rapid increase in sexually transmitted disease incidence across developed parts of urban China, surplus men could become a significant new HIV risk group. The anticipated high sexual risk among many surplus men and injecting drug use use among a subgroup of surplus men may create bridging populations from high to low risk individuals. Prevention strategies that emphasize traditional measures – condom promotion, sex education, medical training – must be reinforced by strategies which acknowledge surplus men and sex workers. Reform within female sex worker mandatory re-education centers and site specific interventions at construction sites, military areas, or unemployment centers may hold promise in curbing HIV/sexually transmitted infections. From a sociological perspective, we believe that surplus men and sex workers will have a profound effect on the future of HIV spread in China and on the success or failure of future interventions.

International AIDS Society global scientific strategy: towards an HIV cure 2016

Antiretroviral therapy is not curative. Given the challenges in providing lifelong therapy to a global population of more than 35 million people living with HIV, there is intense interest in developing a cure for HIV infection. The International AIDS Society convened a group of international experts to develop a scientific strategy for research towards an HIV cure. This Perspective summarizes the groups strategy.

Distribution of medical insurance in China

This paper investigates factors related to the distribution of medical insurance coverage in China, using information from an eight-province household survey of almost 16,000 individuals, conducted in 1989. Results of bivariate analyses show that medical insurance coverage, defined very broadly, varies considerably by individual and regional characteristics. Age, gender, education, occupation, employment sector, urbanization, level of industrial and commercial development, and province are all related to being insured or not. In addition, we find that the type of insurance program available to people varies by these same factors, and that the benefits provided by the seemingly uniform public and worker programs also vary, especially by province and degree of urban development. When the individual and regional variables are considered together in logistic regression analyses, the factors most strongly statistically related to the likelihood of being insured are where one works and where one lives. The distribution of insurance benefits in China appears to result in a pattern in which the rural and the poor, who are often at great risk of illness, are less likely to have medical insurance.

Equity and the utilization of health services: Report of an eight-province survey in China

This paper investigates equity with respect to one component of welfare in China--the provision and use of health services. Based upon a large-scale survey of almost 16,000 individuals in eight provinces in China, we examine a sub-sample of working-age adults who have identified themselves as injured or ill during the four weeks prior to being interviewed. We found that, beyond the level of severity of the reported condition, very few individual-level factors are related to the use of services when ill or injured. Only gender (female) and employment in state-run enterprises are associated with higher patterns of use. These results suggest that China has achieved a very wide distribution of clinics and other services at the local level, and that they are widely used by those who identify need for them. It is rare to be over half an hour away by bike from some form of care and the majority of care appears to be reasonably inexpensive. This broad availability of services contrasts with recent reports from China stressing declining accessibility, and paints a picture of relatively equal access to health care.

THE ROLE OF RACE AND TRUST IN TISSUE/BLOOD DONATION FOR GENETIC RESEARCH

Background: Public willingness to donate tissue samples is critical to genetic research. Prior work has linked minority status and mistrust with less willingness to provide specimens. Some have suggested recruitment of prior research participants to address these barriers. We present data from a genetic epidemiology study with a request for blood and/or saliva specimens to (1) measure willingness to donate tissue/blood samples, (2) identify demographic, trust, and other factors associated with willingness to donate samples, and (3) measure willingness to participate in future genetic research.Methods: We surveyed participants in the North Carolina Colorectal Cancer Study, which included biologic sample collection from consenting participants. Participants were later asked about sample provision; trust in researchers, and future research participation.Results: African Americans were less likely to give a blood sample, when compared with whites (21% vs. 13%, P < 0.05). After controlling for “trust,” this difference was no longer statistically significant (17% vs. 13%, P = 0.27). Those who had given samples were more likely to express willingness to participate in future research.Conclusion: Despite prior participation in a genetic epidemiology study, factors associated with provision of tissue samples reflected many previously identified demographic factors (race and trust). Interventions to improve and demonstrate the trustworthiness of the research team and recruitment of subjects with a record of sample donation might enhance future study participation.

Public Willingness to Participate in and Public Opinions About Genetic Variation Research: A Review of the Literature

Scientists are turning to genetic variation research in hopes of addressing persistent racial/ethnic disparities in health. Despite ongoing controversy, the advancement of genetic variation research is likely to produce new knowledge and technologies that will substantially change the ways in which we understand and value health. They also may affect the ways in which individuals and groups organize socially, politically, and economically. Addressing concerns that may exist in different communities is vital to the scientific and ethical advancement of genetic variation research. We review empirical studies of public willingness to participate in and opinions about genetic research with particular attention to differences in consent and opinion by racial/ethnic group membership.

Re-Drawing Boundaries: Work, Households, and Gender in China

Representing the culmination of more than a decade of empirical research in post-Mao China, this collection of essays explores changes in the nature of work in relation to changes in households, migration patterns, and gender roles during an era of economic reform. The contributors are respected scholars in fields that range from history and anthropology to demography and sociology. They use a variety of data and diverse approaches to gauge the impact of new economic opportunities on Chinese households and to show how the rise of the private sector, the industrialization of the countryside, and increased migration have affected Chinese workers and workplaces. The collection also asks us to consider how gender roles have been redefined by the economic and institutional changes that arose from post-Mao market reform.