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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.

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 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.

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.

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.

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.

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.

A significant subset of patients (12 per cent) with triple negative breast cancer (TNBC) is BRCA mutation carriers, which can be identified through genetic testing. The purpose of this paper is to evaluate the referral practice for TNBC patients with reference to New South Wales (NSW) referral guidelines at the time of diagnosis and to assess the effectiveness of such guidelines in identifying BRCA mutations. Robust health governance requires monitoring of adherence to evidence-based guidelines such as those that underpin referral for cancer genetic testing in this clinical scenario.

The authors conducted a retrospective clinical audit of identified TNBC patients at St Vincent’s Hospital (SVH) between 2006 and 2016 in NSW, comparing referral practice to guidelines extant at the time of diagnosis. Family history was considered for age guideline-inappropriate referrals to SVH while the results of BRCA gene testing were assessed for all referred.

Overall, of the 17 patients eligible for referral based on the age criterion, 10 (58.5 per cent) were referred appropriately; however, there were substantial improvements from 2012 with 100 per cent referred. Of note, 12 (33.4 per cent) of 36 patients referred to SVH were referred outside of guidelines, pointing to other reasons for referral, such as patient age (OR 0.945; 95% CI 0.914–0.978) and calendar year (OR: 1.332; 95% CI: 1.127–1.575) at TNBC diagnosis. Referral guidelines captured 66.67 per cent of identified deleterious BRCA mutations in those tested.

Substantial under-referral of guideline-eligible patients was identified, with evidence-based guidelines effective in identifying high-risk individuals for BRCA mutation testing. There was, however, a substantial proportion of guideline-inappropriate referrals.

The optimization of quality‐of‐service (QoS) aware service selection problems is a crucial issue in both grids and distributed service‐oriented systems. When several implementations per service exist, one has to be selected for each workflow step. This paper aims to address these issues.

The authors proposed several heuristics with specific focus on blackboard and genetic algorithms. Their applicability and performance has already been assessed for static systems. In order to cover real‐world scenarios, the approaches are required to deal with dynamics of distributed systems.

The proposed algorithms prove their feasibility in terms of scalability and runtime performance, taking into account their adaptability to system changes.

In this paper, the authors propose a representation of the dynamic aspects of distributed systems and enhance their algorithms to efficiently capture them.

By combining both algorithms, the authors envision a global approach to QoS‐aware service selection applicable to static and dynamic systems.

The authors prove the feasibility of their hybrid approach by deploying the algorithms in a cloud environment (Google App Engine), that allows simulating and evaluating different system configurations.

The purpose of this paper is to inform or alert readers to the extensive use and ready availability of genetic information that poses varying degrees of social and legal danger. The eugenics movement of the 1920s and the general acceptance of genetic essentialism provide context for considering contemporary examples of the problem.

This paper takes an argumentative approach, supporting proposals with ideas from historical and current research literature.

The limits of data protection, extensive use of direct-to-consumer genetic testing and use of genetic information in white nationalist circles portend a resurgence of eugenic beliefs from a century ago.

Research-based recommendations may help to avoid extreme consequences by encouraging people to make informed decisions about the use of genetic information.

The paper counterposes contemporary understanding of genetic testing and data accessibility with the much older ideology of eugenics, leading to concerns about how white nationalists might further their aims with 21st century technology.

The purpose of this paper is to develop a model considering synergy effect for prefabricated construction service combination selection.

This research defines prefabricated construction service as a service-led construction method that meets the specific requirements of clients. Based on network theory, the multi-dimensional collaborative relationships of the prefabricated construction inter-services are formulated. The synergy effect is quantitatively calculated through the linear weighting of the strengths of collaborative relationships. Further, a weighted synergy network (WSN) is developed, from which a service composition selection model considering the synergy effect is established. Then, a genetic algorithm is employed to implement the model.

The results showed that (1) when the number of prefabricated construction services is increased, the synergy effect of combination options is enhanced; (2) The finer-grained prefabricated construction services, the stronger the synergy effect of service combination; (3) Clients have heterogeneous preferences for collaborative relationships, and there are differences in the synergy effect of service combination.

The contribution of this research includes proposed a method to quantify the synergy effect from the perspective of collaborative relationships, explored the specific procedure for the prefabricated construction service combination selection under the service-led construction, and provided a reference for promoting the development in construction. Besides, the model proposed could be applied to prefabricated construction service composition selection with diverse research boundaries or client preferences by executing the same procedure.

The purpose of this research is to investigate how the consumer’s trusting mechanism influences their behavioral adoption intention in the context of genetic testing.

Based on the technology acceptance theory and trust formation theory, the research posits and develops a comprehensive trust model by integrating trust-related factors that correlate to the consumer’s trusting beliefs and trusting intention. Survey data with 525 respondents allow to test and validate the model.

The tested model shows that technology institutional trust base, end-user’s cognitive trust base and social influence are significant determinants of trusting beliefs. The findings also reveal that mediation effects of performance expectancy and perceived risks exist in the relationship between trusting beliefs and trusting intention.

The foreseeable positive impact and rapid market growth of emerging healthcare technologies necessitate the strong need to study user acceptance. However, there is a lack of research on how consumers trust and their adoption intention of such innovations. Prior empirical evidence from different contexts and perspectives also show contradictory findings. This research extends the existing technology acceptance literature to a healthcare context, provides an improved generalized understanding of the consumer’s trusting mechanism in emerging biotechnology and discusses practical insights for regulatory authorities, healthcare institutes and medical professionals.