scholarly journals Polygenic risk-stratified screening for cancer: Responsibilization in public health genomics

2019 ◽  
Vol 49 (4) ◽  
pp. 605-626 ◽  
Author(s):  
Anne Kerr ◽  
Tineke Broer ◽  
Emily Ross ◽  
Sarah Cunningham Burley
Keyword(s):  
Public Health ◽  
Research Participation ◽  
Molecular Data ◽  
Individual Risk ◽  
Personal Health ◽  
Public Health Genomics ◽  
Professional Discourse ◽  
Polygenic Risk ◽  
The Public ◽  
Data Practices

In this article, we examine professional discourse around the development of polygenic risk-stratified screening (PRSS) for cancer. Analyzing a range of contemporary professional literatures from Europe, North America and Australia, we explore how the drive to screen for molecular markers of cancer risk makes professionals, screening recipients and publics responsible, in different ways, for acquiring, curating and analyzing molecular data. Investigating how these responsibilities are invoked in discussions of new data practices, technologies, organizational arrangements, engagement, education and protocols for participation, we argue that agendas for PRSS for cancer are both expanding and stratifying responsibilities. Data collection is to be achieved by intensified responsibilities for including, reassuring and recruiting populations, as well as by opening and enriching the datasets on which models and preventative screening arrangements are based. Enhanced responsibilities for screening recipients and publics are also invoked, not just in relation to personal health but for population health more generally, via research participation and consenting to data re-use in the public interest. Professionals, screening recipients and publics are also to become responsible for moderating expectations of screening according to genomic designations. Together these discourses go beyond individual risk management to extend and diversify the responsibilities of practitioners, screening recipients and publics as public health genomics develops.

Entering the Public Health Genomics Era

2007 ◽  
Vol 38 (3) ◽  
pp. 157-165 ◽  
Author(s):  
Lei-Shih Chen ◽  
Patricia Goodson
Keyword(s):  
Public Health ◽  
Public Health Genomics ◽  
The Public

scholarly journals Health Observation App for COVID-19 Symptom Tracking Integrated With Personal Health Records: Proof of Concept and Practical Use Study (Preprint)

2020 ◽  
Author(s):  
Keiichi Yamamoto ◽  
Tsubasa Takahashi ◽  
Miwa Urasaki ◽  
Yoichi Nagayasu ◽  
Tomonari Shimamoto ◽  
...  
Keyword(s):  
Public Health ◽  
Health Center ◽  
Health Management ◽  
Personal Health Records ◽  
Personal Health ◽  
Proof Of Concept ◽  
Epidemiological Investigation ◽  
Health Records ◽  
Public Health Center ◽  
The Public

BACKGROUND As a counter-cluster measure to prevent the spread of the infectious novel coronavirus disease (COVID-19), an efficient system for health observation outside the hospital is urgently required. Personal health records (PHRs) are suitable for the daily management of physical conditions. Importantly, there are no major differences between the items collected by daily health observation via PHR and the observation of items related to COVID-19. Until now, observations related to COVID-19 have been performed exclusively based on disease-specific items. Therefore, we hypothesize that PHRs would be suitable as a symptom-tracking tool for COVID-19. To this end, we integrated health observation items specific to COVID-19 with an existing PHR-based app. OBJECTIVE This study is conducted as a proof-of-concept study in a real-world setting to develop a PHR-based COVID-19 symptom-tracking app and to demonstrate the practical use of health observations for COVID-19 using a smartphone or tablet app integrated with PHRs. METHODS We applied the PHR-based health observation app within an active epidemiological investigation conducted by Wakayama City Public Health Center. At the public health center, a list is made of individuals who have been in close contact with known infected cases (health observers). Email addresses are used by the app when a health observer sends data to the public health center. Each health observer downloads the app and installs it on their smartphone. Self-observed health data are entered daily into the app. These data are then sent via the app by email at a designated time. Localized epidemiological officers can visualize the collected data using a spreadsheet macro and, thus, monitor the health condition of all health observers. RESULTS We used the app as part of an active epidemiological investigation executed at a public health center. During the investigation, 72 close contacts were discovered. Among them, 57 had adopted the use of the health observation app. Before the introduction of the app, all health observers would have been interviewed by telephone, a slow process that took four epidemiological officers more than 2 hours. After the introduction of the app, a single epidemiological officer can carry out health observations. The app was distributed for free beginning in early March, and by mid-May, it had been used by more than 20,280 users and 400 facilities and organizations across Japan. Currently, health observation of COVID-19 is socially recognized and has become one of the requirements for resuming social activities. CONCLUSIONS Health observation by PHRs for the purpose of improving health management can also be effectively applied as a measure against large-scale infectious diseases. Individual habits of improving awareness of personal health and the use of PHRs for daily health management are powerful armaments against the rapid spread of infectious diseases. Ultimately, similar actions may help to prevent the spread of COVID-19.

scholarly journals Informatics and Data Analytics to Support Exposome-Based Discovery for Public Health

2017 ◽  
Vol 38 (1) ◽  
pp. 279-294 ◽  
Author(s):  
Arjun K. Manrai ◽  
Yuxia Cui ◽  
Pierre R. Bushel ◽  
Molly Hall ◽  
Spyros Karakitsios ◽  
...  
Keyword(s):  
Public Health ◽  
Data Analytics ◽  
Public Health Research ◽  
Public Health Genomics ◽  
Public Health Community ◽  
Human Genomics ◽  
The Public ◽  
Health Community ◽  
Genomics Research ◽  
Data Ecosystem

The complexity of the human exposome—the totality of environmental exposures encountered from birth to death—motivates systematic, high-throughput approaches to discover new environmental determinants of disease. In this review, we describe the state of science in analyzing the human exposome and provide recommendations for the public health community to consider in dealing with analytic challenges of exposome-based biomedical research. We describe extant and novel analytic methods needed to associate the exposome with critical health outcomes and contextualize the data-centered challenges by drawing parallels to other research endeavors such as human genomics research. We discuss efforts for training scientists who can bridge public health, genomics, and biomedicine in informatics and statistics. If an exposome data ecosystem is brought to fruition, it will likely play a role as central as genomic science has had in molding the current and new generations of biomedical researchers, computational scientists, and public health research programs.

scholarly journals A Compassionate Framework for Reducing Harm in Public Health Higher Education: Implications for the COVID-19 Pandemic

2020 ◽  
pp. 237337992095484
Author(s):  
Jessica G. Burke ◽  
James E. Egan ◽  
Robert W. S. Coulter ◽  
Shannon Mitchell ◽  
Abisola Olaniyan ◽  
...  
Keyword(s):  
Public Health ◽  
Higher Education ◽  
Harm Reduction ◽  
Educational System ◽  
Health Professionals ◽  
Personal Health ◽  
The Public ◽  
Student Teacher Relationship ◽  
Public Health Professionals ◽  
Key Points

We believe a harm reduction framework offers guidance for managing the student-teacher relationship in pandemic situations. This commentary defines the six principles of harm reduction (humanism, pragmatism, individualism, autonomy, incrementalism, and accountability without termination) and describes how these principles can be applied within the public health higher educational system in the COVID-19 era. The key points are intended to stimulate thought and discussion about how to balance general uncertainty, concerns about what is best for population and personal health, the tensions between collectivism and individualism, and our commitment to training and protecting the health of the next generation of public health professionals. We recommend that educators, in public health and other higher education settings, use the harm reduction principles to guide their interactions with students and to build more compassionate and collectivist communities that allow people to learn and thrive.

scholarly journals Analysis of existing international policy evidence in public health genomics: mapping exercise

2012 ◽  
Vol 1 (1) ◽  
pp. 8
Author(s):  
Elena V. Syurina ◽  
Tobias Schulte in den Bäumen ◽  
Frans J.M. Feron ◽  
Angela Brand
Keyword(s):  
Public Health ◽  
New Technologies ◽  
Human Subjects ◽  
Science Research ◽  
Institute Of Medicine ◽  
Public Health Genomics ◽  
The Public ◽  
Initial Stage ◽  
Protection Of Human Subjects ◽  
Design And Methods

<em>Background</em>. In the last decades we have seen a constant growth in the fields of science related to the use of genome-based health information. However, there is a gap between basic science research and the Public Health everyday practice. For a successful introduction of genome-based technologies policy actions on the international level are needed. This work represents the initial stage of the PHGEN II (Public Health Genomics European Network II) project. In order to prepare a base for bridging genomics and Public Health, an inventory study of the existing legislative base dealing with controversies of genome-based knowledge was conducted. The work results in the mapping of the most and the least legislatively covered areas and some preliminary conclusions about the existing gaps. <em>Design and Methods</em>. The collection of the evidence-based policies was done through the PHGEN II project. The mapping covered the meta-level (international, European general guidelines). The expert opinion of the partners of the project was required to reflect on and grade the collected evidence. Results. An analysis of the evidence was made by the area of coverage: using the list of important policy areas for successful introduction of genome-based technologies into Public Health and the Public Health Genomics Wheel (originally Public Health Wheel developed by Institute of Medicine). <em>Conclusions</em>. Severe inequalities in coverage of important issues of Public Health Genomics were found. The most attention was paid to clinical utility and clinical validity of the screening and the protection of human subjects. Important areas such as trade agreements, Public Health Genomics literacy, insurance issues, behaviour modification in response to genomics results etc. were paid less attention to. For the successful adoption of new technologies on the Public Health level the focus should be not only on the translation to clinical practice, but the translation from bench to Public Health policy and back. Coherent and consistent coverage of all aspects of the translation of genome based information and technologies is of outmost importance.

scholarly journals Health Observation App for COVID-19 Symptom Tracking Integrated With Personal Health Records: Proof of Concept and Practical Use Study

10.2196/19902 ◽  
2020 ◽  
Vol 8 (7) ◽  
pp. e19902 ◽  
Author(s):  
Keiichi Yamamoto ◽  
Tsubasa Takahashi ◽  
Miwa Urasaki ◽  
Yoichi Nagayasu ◽  
Tomonari Shimamoto ◽  
...  
Keyword(s):  
Public Health ◽  
Health Center ◽  
Health Management ◽  
Personal Health Records ◽  
Personal Health ◽  
Proof Of Concept ◽  
Epidemiological Investigation ◽  
Health Records ◽  
Public Health Center ◽  
The Public

Background As a counter-cluster measure to prevent the spread of the infectious novel coronavirus disease (COVID-19), an efficient system for health observation outside the hospital is urgently required. Personal health records (PHRs) are suitable for the daily management of physical conditions. Importantly, there are no major differences between the items collected by daily health observation via PHR and the observation of items related to COVID-19. Until now, observations related to COVID-19 have been performed exclusively based on disease-specific items. Therefore, we hypothesize that PHRs would be suitable as a symptom-tracking tool for COVID-19. To this end, we integrated health observation items specific to COVID-19 with an existing PHR-based app. Objective This study is conducted as a proof-of-concept study in a real-world setting to develop a PHR-based COVID-19 symptom-tracking app and to demonstrate the practical use of health observations for COVID-19 using a smartphone or tablet app integrated with PHRs. Methods We applied the PHR-based health observation app within an active epidemiological investigation conducted by Wakayama City Public Health Center. At the public health center, a list is made of individuals who have been in close contact with known infected cases (health observers). Email addresses are used by the app when a health observer sends data to the public health center. Each health observer downloads the app and installs it on their smartphone. Self-observed health data are entered daily into the app. These data are then sent via the app by email at a designated time. Localized epidemiological officers can visualize the collected data using a spreadsheet macro and, thus, monitor the health condition of all health observers. Results We used the app as part of an active epidemiological investigation executed at a public health center. During the investigation, 72 close contacts were discovered. Among them, 57 had adopted the use of the health observation app. Before the introduction of the app, all health observers would have been interviewed by telephone, a slow process that took four epidemiological officers more than 2 hours. After the introduction of the app, a single epidemiological officer can carry out health observations. The app was distributed for free beginning in early March, and by mid-May, it had been used by more than 20,280 users and 400 facilities and organizations across Japan. Currently, health observation of COVID-19 is socially recognized and has become one of the requirements for resuming social activities. Conclusions Health observation by PHRs for the purpose of improving health management can also be effectively applied as a measure against large-scale infectious diseases. Individual habits of improving awareness of personal health and the use of PHRs for daily health management are powerful armaments against the rapid spread of infectious diseases. Ultimately, similar actions may help to prevent the spread of COVID-19.

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