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Book part
Publication date: 16 July 2015

Laura Senier, Matthew Kearney and Jason Orne

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

Abstract

Purpose

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

Methodology/approach

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.

Findings

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.

Research/Policy Implications

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.

Originality/Value

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.

Case study
Publication date: 20 January 2017

Daniel Diermeier and Shobita Parthasarathy

Describes Myriad Genetics and its struggle to develop a genetic testing service while facing challenges from competitors and activist organizations. After Myriad's…

Abstract

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.

Details

Kellogg School of Management Cases, vol. no.
Type: Case Study
ISSN: 2474-6568
Published by: Kellogg School of Management

Keywords

Article
Publication date: 21 June 2010

Krishnarajah Nirantharakumar, Tom Fowler, Karen Saunders and Sam Ramaiah

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…

Abstract

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.

Details

Ethnicity and Inequalities in Health and Social Care, vol. 3 no. 2
Type: Research Article
ISSN: 1757-0980

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Article
Publication date: 25 November 2013

Michael Mackert, Marie Guadagno, Amanda Mabry and Lindsay Chilek

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…

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Abstract

Purpose

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.

Design/methodology/approach

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.

Findings

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.

Originality/value

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.

Details

International Journal of Pharmaceutical and Healthcare Marketing, vol. 7 no. 4
Type: Research Article
ISSN: 1750-6123

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Book part
Publication date: 16 July 2015

Amaya Gilson, Susan R. Hemer, Anna Chur-Hansen and Shona Crabb

Risk notification is part of a focus on preventive medicine that is dominant in contemporary Western biomedicine. Genomics has forecasted great advances in alleviating…

Abstract

Purpose

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.

Methodology/approach

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

Findings

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.

Originality/value

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.

Details

Genetics, Health and Society
Type: Book
ISBN: 978-1-78350-581-4

Keywords

Article
Publication date: 15 June 2020

Rodolfo Wadovski, Roberto Nogueira and Paula Chimenti

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…

Abstract

Purpose

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.

Design/methodology/approach

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.

Findings

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).

Practical implications

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.

Originality/value

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.

Details

International Journal of Pharmaceutical and Healthcare Marketing, vol. 14 no. 4
Type: Research Article
ISSN: 1750-6123

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Book part
Publication date: 12 August 2014

Bill Doolin and Andrew W. Hamer

This chapter examines why managed clinical networks are an appropriate approach to sustainable healthcare, and discusses the conditions for the effectiveness of these…

Abstract

Purpose

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.

Design

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.

Findings

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.

Originality and value

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.

Details

Reconfiguring the Ecosystem for Sustainable Healthcare
Type: Book
ISBN: 978-1-78441-035-3

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Article
Publication date: 1 April 2004

Carlos Rodríguez Casal

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…

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Abstract

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.

Details

info, vol. 6 no. 2
Type: Research Article
ISSN: 1463-6697

Keywords

Article
Publication date: 21 June 2021

Farahnaz Amini, Kok Wah Yee, Siew Chin Soh, Abdulateef Alhadeethi, Roya Amini and Edmond Siah Chye Ng

Autism spectrum disorder (ASD) is a group of complex neurodevelopmental disorders with uncertain etiology. Evidence shows that genetic testing can explain about 20% of…

Abstract

Purpose

Autism spectrum disorder (ASD) is a group of complex neurodevelopmental disorders with uncertain etiology. Evidence shows that genetic testing can explain about 20% of cases. This study aims to assess the level of awareness and perception of medical genetic services among Malaysian parents with ASD children.

Design/methodology/approach

A cross-sectional survey using an interviewer-administered questionnaire was done among 111 parents of children with ASD from August 2017 to September 2019 in two clinics in Malaysia.

Findings

A majority of children with ASD (80.20%) were male and diagnosed at the age of 3–4 years old (47.80%). When the autistic child was born, most mothers and fathers were aged 26–30 (40.50%) and 31–35 years old (42.30%), respectively. Another child with ASD in nuclear and extended families was reported for 11.70% and 13.50%, respectively. Only 24.30% have seen a professional genetic consultant, and 19.8% have done genetic testing for affected children. The mean score of awareness of genetic services for ASD was 2.48 ± 3.30. Having medical insurance and another child with ASD in the nuclear family was significantly associated with a higher level of awareness (p = 0.01 and p < 0.001, respectively). Most of the participants have a positive perception of these services.

Originality/value

Regardless of demographic factors, participants have poor awareness of genetic services for ASD, likely because the primary physician did not recommend it upon diagnosis. Increasing health-care providers’ knowledge about the current potential of genetic testing for ASD and educational campaigns for the public are critical components of using available genetic tests to improve ASD management.

Details

Advances in Autism, vol. 8 no. 1
Type: Research Article
ISSN: 2056-3868

Keywords

Book part
Publication date: 16 July 2015

Catherine Bliss

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

Abstract

Purpose

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

Methodology/approach

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.

Findings

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.

Originality/value

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.

Details

Genetics, Health and Society
Type: Book
ISBN: 978-1-78350-581-4

Keywords

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