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This mixed-methods study reports on an outreach clinics program designed to deliver genetic services to medically underserved communities in Wisconsin.

We show the geographic distribution, funding patterns, and utilization trends for outreach clinics over a 20-year period. Interviews with program planners and outreach clinic staff show how external and internal constraints limited the program’s capacity. We compare clinic operations to the conceptual models guiding program design.

Our findings show that state health officials had to scale back financial support for outreach clinic activities while healthcare providers faced increasing pressure from administrators to reduce investments in charity care. These external and internal constraints led to a decline in the overall number of patients served. We also find that redistribution of clinics to the Milwaukee area increased utilization among Hispanics but not among African-Americans. Our interviews suggest that these patterns may be a function of shortcomings embedded in the planning models.

Planning models have three shortcomings. First, they do not identify the mitigation of health disparities as a specific goal. Second, they fail to acknowledge that partners face escalating profit-seeking mandates that may limit their capacity to provide charity services. Finally, they underemphasize the importance of seeking trusted partners, especially in working with communities that have been historically marginalized.

There has been little discussion about equitably leveraging genetic advances that improve healthcare quality and efficacy. The role of State Health Agencies in mitigating disparities in access to genetic services has been largely ignored in the sociological literature.

Risk notification is part of a focus on preventive medicine that is dominant in contemporary Western biomedicine. Genomics has forecasted great advances in alleviating disease and prolonging human life, moving from a reactive to a preventative practice. However, in doing so, genomics redraws boundaries, potentially classifying all people as possible carriers of malfunctioning genes. This chapter presents a critical review of the practice of ‘risk notification’ as undertaken by familial cancer genetic testing services, focusing on the right to be informed or not to be informed and implications of knowing.

With backgrounds in anthropology, psychology and public health, the authors draw upon literature around risk notification from a range of disciplines.

In the context of familial cancer, clients may be asked to provide contact information for biological family members to inform them of their potential genetic risk. Through these processes a number of tensions and issues may emerge that relate to fundamental bioethical principles. The ability and decision whether to know, or conversely, to not know, is ethically fraught. We consider the roles and rights of family members and clients, as well as the broader goal of population health.

While much attention has been devoted to clients’ right to know in the context of medical research and treatment, relatively little work has examined the right not to know and adverse consequences of knowing. This review addresses concerns which have rarely been critically examined and debated in the context of risk notification of biological family members.

This chapter examines why managed clinical networks are an appropriate approach to sustainable healthcare, and discusses the conditions for the effectiveness of these multi-stakeholder, clinician-led modes of organizing. It describes the development of a national clinical network to achieve system-wide improvement in the provision of publicly funded cardiac surgery services in New Zealand, and the subsequent evolution of a broader network encompassing the whole cardiac care patient pathway.

The case study of the two cardiac clinical networks focuses on the emergence and evolution of the networks over a four-year period from 2009. Data were collected from interviews with key stakeholders of both networks and from internal and published documentary evidence. Analysis of the case study is informed by network theory and prior studies of managed clinical networks.

Progress made towards the achievement of the goals of the initial cardiac surgery network encouraged a broadening of focus to the entire cardiac care pathway and the establishment of the national cardiac network. An important benefit has been the learning and increase in understanding among the different stakeholders involved. Both clinical networks have demonstrated the value of clinician engagement and leadership in improving the delivery of health services, and serve as a best practice model for the development of further clinical networks for health services that require a national population base.

The case study analysis of the two cardiac clinical networks identifies five mutually reinforcing themes that underpin network effectiveness: network structure, management and governance, and internal and external legitimation. These themes encompass a number of factors suggestive of successful managed clinical networks, and offer insights into the use of such networks in organizing for sustainable healthcare.

This chapter explores the rise in genetic approaches to health disparities at the turn of the twenty-first century.

Analysis of public health policies, genome project records, ethnography of project leaders and leading genetic epidemiologists, and news coverage of international projects demonstrates how the study of health disparities and genetic causes of health simultaneously took hold just as the new field of genomics and matters of racial inequality became a global priority for biomedical science and public health.

As the U.S. federal government created policies to implement racial inclusion standards, international genome projects seized the study race, and diseases that exhibit disparities by race. Genomic leaders made health disparities research a central feature of their science. However, recent attempts to move toward analysis of gene-environment interactions in health and disease have proven insufficient in addressing sociological contributors to health disparities. In place of in-depth analyses of environmental causes, pharmacogenomics drugs, diagnostics, and inclusion in sequencing projects have become the frontline solutions to health disparities.

The chapter argues that genetic forms of medicalization and racialization have taken hold over science and public health around the world, thereby engendering a divestment from sociological approaches that do not align with the expansion of genomic science. The chapter thus contributes to critical discussions in the social and health sciences about the fundamental processes of medicalization, racialization, and geneticization in contemporary society.

The progress of genetic medicine has given rise to recent changes in the field of health care, such as expected benefits and potential risks for patients and their relatives. Individual genetic information can unlock many secrets within the genetic family and, sometimes the community to which he or she belongs. Therefore, the traditional duty of confidentiality owed by a health care professional to a patient has been challenged by the more serious discussions based on new genetics. Clinical geneticists providing genetic services must be aware of such complicated situations and whenever possible offer support to the patient (client) and their family members. Excluding eugenics and nonscientific perspectives, the Japanese government renamed and reworked “The Eugenic Protection Act” into the “Maternal Heath Protection Act” in 1996. From 1995 to 2003, the Japanese Society of Human Genetics (JSHG) revised guidelines for genetic testing three times. This process attempted to clarify indications for genetic testing, to focus on protection of individual genetic privacy and to deepen respect for familial relationships and responsibilities. The survey involving 221 JSHG approved clinical geneticist (response rate 54%) revealed that during last 5 years the number trying to do “non-directive” rather than “directive” counseling increased significantly. Although there is still in confusion on certain issues, such as data disclosure to relatives, the global bioethical view of new genetics is gaining Japanese geneticists’ acceptance.

This chapter proposes an optimized innovative information technology as a means for achieving operational functionalities of real-time portable electronic health records, system interoperability, longitudinal health-risks research cohort and surveillance of adverse events infrastructure, and clinical, genome regions – disease and interventional prevention infrastructure. In application to the Dod-VA (Department of Defense and Veteran's Administration) health information systems, the proposed modernization can be carried out as an “add-on” expansion (estimated at $288 million in constant dollars) or as a “stand-alone” innovative information technology system (estimated at $489.7 million), and either solution will prototype an infrastructure for nation-wide health information systems interoperability, portable real-time electronic health records (EHRs), adverse events surveillance, and interventional prevention based on targeted single nucleotide polymorphisms (SNPs) discovery.

Purpose: After the dissolution of the Soviet Union, Belarus began to develop a national policy on reproductive health, influenced by late Soviet policy, market relations, and international actors. The central question of this research is how the issues of reproduction and woman’s health are reconsidered in post-Soviet Belarus, in light of the influence of various social and political factors.

Methodology/approach: This chapter critically examines discourses of legal regulations of reproduction and how they promote certain understandings of national security and traditional values through reproduction. In particular, the study is based on the discourse-analysis of the official legislative documents on reproduction in Belarus between 1991 and 2015.

Findings: The transformation of the post-Soviet social protection system, reproductive health care, family policy, as well as specific configuration of public discourse legitimize one model (unified and homogenized normative body that is heterosexual, fertile, healthy, prosperous) and exclude others (non-normative bodies that are non-heterosexual, infertile, unhealthy, poor, and thus precarious for the nation) in favor of the interests of biopolitical governance, nation-building, and neoliberal ideology. Moreover, legal documents legalize new principles of social stratification and produce new ideas about responsible parenthood.

Social implications: Although there is some scholarship on reproduction in Belarus, a thorough analysis of the public discourse and the legal regulations of reproduction has yet to be conducted. Contributing to the debate about post-Soviet reproductive politics, this chapter explores the influence of the biopolitical dialogue and the panic around depopulation on social policies. In particular, this chapter offers more critical perspective toward the economic and social dynamics in Belarus, taking into account the variety of processes and configurations of discourses that influence official policy.