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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.

Describes Myriad Genetics and its struggle to develop a genetic testing service while facing challenges from competitors and activist organizations. After Myriad's discovery of the BRCA gene, capable of genetic testing for breast cancer in women, Myriad needed to choose a strategy to provide this service to the public. With several major competitors offering similar services, intense media scrutiny, and a charged activist and political climate, a poor Myriad decision could have major repercussions.

Describes Myriad Genetics and its struggle to secure exclusive testing services for the BRCA gene. After Myriad obtained licensing rights and dissolved its U.S. competition, it turned its focus to Europe, specifically the United Kingdom. The U.K. National Health Service had made genetic testing available to the public and Myriad had to decide which course of action would be most effective in stopping British BRCA genetic testing and expanding Myriad's own service to this new market.

Health inequalities exist between ethnic groups, an important example of this being infant mortality with babies of mothers born in Pakistan having double and babies of mothers born in the Caribbean having 63% higher rates than the national average. West Midlands Ethnic Minority Liaison Committee (WELCOME) and partners organised a conference to arrive at consensus among experts and stakeholders and to make recommendations around reducing infant mortality. One key area discussed, which is often contentious, was cousin marriage: its potential impact on infant and perinatal mortality and what health service response to this should be. Recommendations included: the setting up of a community genetic service in areas with higher risk of recessive disorders as a consequence of cousin marriage; genetic education to the wider public and health professionals; and community engagement, including community and religious leaders. This paper outlines how these recommendations were arrived at, the potential barriers identified in addressing this issue and the process by which service change was achieved with an aim to improve the outcome of infant and perinatal health among groups with higher burdens of genetic disorders in Walsall.

The aim of this paper is to call for an increased focus on the ethics of direct-to-consumer (DTC) prescription drug advertising. This is important, not only to improve DTC prescription drug advertising, but also to inform DTC advertising of future medical advances.

This conceptual paper discusses two examples of medical advances – personal genetic testing services and surgically implanted medical devices – to explain how investigating the research of DTC prescription drug advertising can set the stage for more ethical advertising of future medical advances.

Specific issues related to health literacy, at-risk populations impacted by health disparities, and medicalization of issues common to aging relate to the DTC advertising of prescription drugs and other medical advances. Creative approaches to investigating these issues in the context of prescription drug advertising can enrich the debate about drug advertising, but also prepare researchers, policymakers, and consumers for future advertising of new medical developments.

The value of this paper is its call for increased focus on the ethics of DTC prescription drug advertising, to improve the current marketing environment but also lay the foundation for other healthcare marketing in the future.

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.

Genetic knowledge is advancing steadily while at the same time DNA sequencing prices are dropping fast, but the diffusion of genetic services (GS) has been slow. The purpose of this paper is to identify GS diffusion drivers in the precision medicine (PM) ecosystem.

After reviewing the literature on innovation diffusion, particularly on GS diffusion, the PM ecosystem actors are interviewed to obtain their perspective. Using content analysis, the interviewees’ visions were interplayed with the literature to achieve driver conceptualization, which posteriorly originated broad themes.

The results indicate that GS diffusion depends on satisfying aspects from three broad themes and respective drivers: technology (evidence strength and credibility, customization, knowledge, data and information, tech evolution speed and cost), human (ethics, privacy and security and user power) and business (prevention, holistic view of the individual, public policy and regulation, business model and management).

The main management implications refer to considering health care in a multidisciplinary way, investing in the propagation of genetic knowledge, standardizing medical records and interpreting data.

This study, to the best of authors’ knowledge, is the first attempt to understand GS diffusion from a broad perspective, taking into account the PM stakeholders’ view. The 13 drivers offer a comprehensive understanding of how GS could spread in health care and they can assist researchers and practitioners to discuss and set strategies based on an initial structured map.

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 article is based on a report to the Committee on Citizens' Freedoms and Rights, Justice and Home Affairs of the European Parliament by IPTS, addressing increasing concerns about the impact of emerging information and communication technologies and services on security and personal privacy. This paper presents the findings on location‐based services from the above report. It explores in more depth the effect that the processing of location data (for use in services supported by mobility and integrated within the ambient intelligence context), will have on the future balance between security and privacy.

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.