On behalf of The Lancet and Financial Times Commission on Governing health futures 2030: Growing up in a digital world (GHFutures2030), the co-chairs are honored to announce the publication of the Journal of Science Policy & Governance (JSPG) Special Issue, Volume 21, Issue 3, focused on Strengthening Youth-Centered Policy and Governance of Digital Transformations in Health
{"title":"Cover Memo: Volume 21, Issue 3, Special Issue on Youth-Centered Digital Health Policy","authors":"A. Bytyqi, I. Kickbusch, Anurag Agrawal","doi":"10.38126/jspg2103cm","DOIUrl":"https://doi.org/10.38126/jspg2103cm","url":null,"abstract":"On behalf of The Lancet and Financial Times Commission on Governing health futures 2030: Growing up in a digital world (GHFutures2030), the co-chairs are honored to announce the publication of the Journal of Science Policy & Governance (JSPG) Special Issue, Volume 21, Issue 3, focused on Strengthening Youth-Centered Policy and Governance of Digital Transformations in Health","PeriodicalId":222224,"journal":{"name":"Journal of Science Policy & Governance","volume":"8 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"126885018","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
E. Hohmann, Brian King, R. Laroche, Adam Wilkinson, Alexis Wilkinson
In just twenty years, humanity has progressed from the first sequenced human genome to the ability to sequence one in a matter of hours and for only hundreds of dollars. This rise in affordability and speed has enabled physicians to use whole genome sequencing (WGS) as a diagnostic tool, particularly in cases of rare disease in pediatric patients where it has already demonstrated immense potential. However, such a rapid development in technology powerful enough to unlock a person’s genetic information has also led to necessary questions regarding when and how it is applied. In this assessment, we discuss the implications of WGS adoption in pediatric healthcare, focusing specifically on ensuring ethical and equitable collection and communication of genomic data as well as the need for secure and accessible data storage methods. We identify several key areas where further policy is most pressing and provide value-driven recommendations centered on guaranteeing pediatric patient safety, equity, and empowerment during the broader introduction of WGS tools. In particular, we advocate for legal frameworks that limit present usage of WGS to only those patients with a clear and present need, guidelines that expand the labor force that can conduct WGS, increasing access and equity, improved standards for storage, access, and sharing of WGS data, and finally expanding Medicaid coverage to include WGS use in critical care settings.
{"title":"Future on a Flashdrive: Timely Considerations for the Imminent Adoption of Whole Genome Sequencing in Pediatric Healthcare","authors":"E. Hohmann, Brian King, R. Laroche, Adam Wilkinson, Alexis Wilkinson","doi":"10.38126/jspg210305","DOIUrl":"https://doi.org/10.38126/jspg210305","url":null,"abstract":"In just twenty years, humanity has progressed from the first sequenced human genome to the ability to sequence one in a matter of hours and for only hundreds of dollars. This rise in affordability and speed has enabled physicians to use whole genome sequencing (WGS) as a diagnostic tool, particularly in cases of rare disease in pediatric patients where it has already demonstrated immense potential. However, such a rapid development in technology powerful enough to unlock a person’s genetic information has also led to necessary questions regarding when and how it is applied. In this assessment, we discuss the implications of WGS adoption in pediatric healthcare, focusing specifically on ensuring ethical and equitable collection and communication of genomic data as well as the need for secure and accessible data storage methods. We identify several key areas where further policy is most pressing and provide value-driven recommendations centered on guaranteeing pediatric patient safety, equity, and empowerment during the broader introduction of WGS tools. In particular, we advocate for legal frameworks that limit present usage of WGS to only those patients with a clear and present need, guidelines that expand the labor force that can conduct WGS, increasing access and equity, improved standards for storage, access, and sharing of WGS data, and finally expanding Medicaid coverage to include WGS use in critical care settings.","PeriodicalId":222224,"journal":{"name":"Journal of Science Policy & Governance","volume":"6 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134391411","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Gender-affirming care has been established as essential healthcare for transgender and non-binary (TNB) youth but many patients face prohibitive barriers when accessing this kind of care. These roadblocks span a wide array of arenas, from digital privacy protections to simply accessing gender affirming care. Many TNB youth lack familial and community support to seek care, geographical access to specialized providers, insurance coverage sufficient to make this care affordable, and legal protections for existing as a TNB person in society. During the COVID-19 pandemic, digital technologies and health legislation expanded patients' access to out-of-state or remote care. Telemedicine in particular has the potential to reduce barriers to accessing gender-affirming care. However, without guidance and oversight in the form of concrete federal or state policies, these benefits may not be extended to those most in need of support. How telehealth providers manage the data collected using these technologies is also of great concern; this health information could be used to prevent and criminalize youth and families seeking care. We thus propose a suite of policy actions to protect and expand access to gender-affirming care for TNB youth: ensuring legal protections for data relating to gender identity and gender-affirming healthcare, establishing nationwide access to gender-affirming care via insurance waivers and support for remote care, and expanding the pool of providers trained in TNB healthcare.
{"title":"Trans and Non-Binary Youth Healthcare in The Digital Age of Medicine","authors":"Lindsey R Fernandez, Kaeri Medina, S. Peterson","doi":"10.38126/jspg210303","DOIUrl":"https://doi.org/10.38126/jspg210303","url":null,"abstract":"Gender-affirming care has been established as essential healthcare for transgender and non-binary (TNB) youth but many patients face prohibitive barriers when accessing this kind of care. These roadblocks span a wide array of arenas, from digital privacy protections to simply accessing gender affirming care. Many TNB youth lack familial and community support to seek care, geographical access to specialized providers, insurance coverage sufficient to make this care affordable, and legal protections for existing as a TNB person in society. During the COVID-19 pandemic, digital technologies and health legislation expanded patients' access to out-of-state or remote care. Telemedicine in particular has the potential to reduce barriers to accessing gender-affirming care. However, without guidance and oversight in the form of concrete federal or state policies, these benefits may not be extended to those most in need of support. How telehealth providers manage the data collected using these technologies is also of great concern; this health information could be used to prevent and criminalize youth and families seeking care. We thus propose a suite of policy actions to protect and expand access to gender-affirming care for TNB youth: ensuring legal protections for data relating to gender identity and gender-affirming healthcare, establishing nationwide access to gender-affirming care via insurance waivers and support for remote care, and expanding the pool of providers trained in TNB healthcare.","PeriodicalId":222224,"journal":{"name":"Journal of Science Policy & Governance","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"129937887","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Cover Memo: Volume 21, Issue 2, Special Issue on Open Science Policies as an Accelerator for Achieving the Sustainable Development Goals","authors":"S. Nair-Bedouelle","doi":"10.38126/jspg2102cm","DOIUrl":"https://doi.org/10.38126/jspg2102cm","url":null,"abstract":"","PeriodicalId":222224,"journal":{"name":"Journal of Science Policy & Governance","volume":"8 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"127632875","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The war in Ukraine and resulting destruction of research institutions have severely affected Ukrainian scientists. Almost 100,000 scientists still reside in Ukraine and require international support to continue their work. Ukrainian scientists would strongly benefit from an organized effort to support them through open science policies. As a result of the ongoing invasion, academic and research institutions in Ukraine have been physically damaged, and researchers face significant obstacles in trying to continue their work. This year, the International Science Council and an international collective of the National Academies of Sciences, Engineering, and Medicine called on the scientific community to assist Ukraine by providing free access to archives, licensed software, and databases. International scientific societies and organizations such as UNESCO can use their resources to encourage collaboration and facilitate remote access to scientific resources for Ukrainian scientists. Open science policies will be key for preserving Ukrainian science and helping rebuild in the future.
{"title":"Open Science for Ukraine: the Case for International Cooperation","authors":"Maya Evanitsky","doi":"10.38126/jspg210205","DOIUrl":"https://doi.org/10.38126/jspg210205","url":null,"abstract":"The war in Ukraine and resulting destruction of research institutions have severely affected Ukrainian scientists. Almost 100,000 scientists still reside in Ukraine and require international support to continue their work. Ukrainian scientists would strongly benefit from an organized effort to support them through open science policies. As a result of the ongoing invasion, academic and research institutions in Ukraine have been physically damaged, and researchers face significant obstacles in trying to continue their work. This year, the International Science Council and an international collective of the National Academies of Sciences, Engineering, and Medicine called on the scientific community to assist Ukraine by providing free access to archives, licensed software, and databases. International scientific societies and organizations such as UNESCO can use their resources to encourage collaboration and facilitate remote access to scientific resources for Ukrainian scientists. Open science policies will be key for preserving Ukrainian science and helping rebuild in the future.","PeriodicalId":222224,"journal":{"name":"Journal of Science Policy & Governance","volume":"36 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"115893082","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Open science, the practice of sharing findings and resources towards the collaborative pursuit of scientific progress and societal good, can accelerate the pace of research and contribute to a more equitable society. However, the current culture of scientific research is not optimally structured to promote extensive sharing of a range of outputs. In this policy position paper, we outline current open science practices and key bottlenecks in their broader adoption. We propose that national science agencies create a digital infrastructure framework that would standardize open science principles and make them actionable. We also suggest ways of redefining research success to align better with open science, and to incentivize a system where sharing various research outputs is beneficial to researchers.
{"title":"Reducing Barriers to Open Science by Standardizing Practices and Realigning Incentives","authors":"Alvina Adimoelja, Advait Athreya","doi":"10.38126/jspg210201","DOIUrl":"https://doi.org/10.38126/jspg210201","url":null,"abstract":"Open science, the practice of sharing findings and resources towards the collaborative pursuit of scientific progress and societal good, can accelerate the pace of research and contribute to a more equitable society. However, the current culture of scientific research is not optimally structured to promote extensive sharing of a range of outputs. In this policy position paper, we outline current open science practices and key bottlenecks in their broader adoption. We propose that national science agencies create a digital infrastructure framework that would standardize open science principles and make them actionable. We also suggest ways of redefining research success to align better with open science, and to incentivize a system where sharing various research outputs is beneficial to researchers.","PeriodicalId":222224,"journal":{"name":"Journal of Science Policy & Governance","volume":"324 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"122323688","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mental health is an important concern in low and middle income countries and must be addressed for sustainable development. Open science is a movement which can contribute significantly towards addressing mental health challenges. Mental health in India and other low and middle income countries faces many challenges, such as lack of resources and low investment. This policy brief proposes an intervention model using the core principles of open science to transform the mental health programmes run by local self-government institutions in India. The model can co-opt key stakeholders involved in the data collection, programme implementation, and monitoring for standardisation. Kerala’s participatory development experience is employed as a case to describe the model. By empowering frontline health workers, accredited volunteers, and officials of the childcare system, and implementing open science principles, this model could help address mental health challenges with minimal resource allocation through the streamlining of the data management process. It could also encourage increased participation in open science through the citizen science model, opening scientific research to non-specialists. Open science principles such as collective benefit, equity, participation, sustainability, and inclusiveness can also be promoted.
{"title":"Open Science, Mental Health, and Sustainable Development: A Proposed Model for a Low-Resource Setting","authors":"Chinchu Chithrangathan","doi":"10.38126/jspg210204","DOIUrl":"https://doi.org/10.38126/jspg210204","url":null,"abstract":"Mental health is an important concern in low and middle income countries and must be addressed for sustainable development. Open science is a movement which can contribute significantly towards addressing mental health challenges. Mental health in India and other low and middle income countries faces many challenges, such as lack of resources and low investment. This policy brief proposes an intervention model using the core principles of open science to transform the mental health programmes run by local self-government institutions in India. The model can co-opt key stakeholders involved in the data collection, programme implementation, and monitoring for standardisation. Kerala’s participatory development experience is employed as a case to describe the model. By empowering frontline health workers, accredited volunteers, and officials of the childcare system, and implementing open science principles, this model could help address mental health challenges with minimal resource allocation through the streamlining of the data management process. It could also encourage increased participation in open science through the citizen science model, opening scientific research to non-specialists. Open science principles such as collective benefit, equity, participation, sustainability, and inclusiveness can also be promoted.","PeriodicalId":222224,"journal":{"name":"Journal of Science Policy & Governance","volume":"2005 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"128821444","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Prior to the emergence of professional researchers, amateurs without formal training primarily made contributions to science in what is known as ‘citizen science.’ Over time, science has become less accessible to the public, while at the same time public participation in research has decreased. However, recent progress in open and citizen science may be the key to strengthening the relationship between researchers and the public. Citizen science may also be key to collecting data that would otherwise be unobtainable through traditional sources, such as measuring progress on the United Nations Sustainable Development Goals (SDGs). However, despite myriad benefits, there has been limited legislative action taken to promote open and citizen science policies. The underlying issues are incentive systems which overemphasize publication in high impact, for-profit journals. The suggested policy solutions include: 1) creating an open database for citizen science projects, 2) restricting publishers from disadvantaging citizen science, and 3) incorporating open science in researcher evaluation.
{"title":"Toppling the Ivory Tower: Increasing Public Participation in Research Through Open and Citizen Science","authors":"Mary Jialu Chen","doi":"10.38126/jspg210203","DOIUrl":"https://doi.org/10.38126/jspg210203","url":null,"abstract":"Prior to the emergence of professional researchers, amateurs without formal training primarily made contributions to science in what is known as ‘citizen science.’ Over time, science has become less accessible to the public, while at the same time public participation in research has decreased. However, recent progress in open and citizen science may be the key to strengthening the relationship between researchers and the public. Citizen science may also be key to collecting data that would otherwise be unobtainable through traditional sources, such as measuring progress on the United Nations Sustainable Development Goals (SDGs). However, despite myriad benefits, there has been limited legislative action taken to promote open and citizen science policies. The underlying issues are incentive systems which overemphasize publication in high impact, for-profit journals. The suggested policy solutions include: 1) creating an open database for citizen science projects, 2) restricting publishers from disadvantaging citizen science, and 3) incorporating open science in researcher evaluation.","PeriodicalId":222224,"journal":{"name":"Journal of Science Policy & Governance","volume":"66 6","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"113964179","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Changes in science funders’ mandates have resulted in advances in open access to data, software, and publications. Research capacity, however, is still unequally distributed worldwide, hindering the impact of these efforts. We argue that to achieve the Sustainable Development Goals (SDGs), open science policies must shift focus from products to processes and infrastructure, including access to open source scientific equipment. This article discusses how conventional, black box, proprietary approaches to science hardware reinforce inequalities in science and slow down innovation everywhere, while also representing a threat to research capacity strengthening efforts. We offer science funders three policy recommendations to promote open science hardware for research capacity strengthening: a) incorporating open hardware into existing open science mandates, b) incentivizing demand through technology transfer and procurement mechanisms, c) promoting the adoption of open hardware in national and regional service centers. We expect this agenda to foster capacity building towards enabling the more equitable and efficient science needed to achieve the SDGs.
{"title":"Equitable Research Capacity Towards the Sustainable Development Goals: The Case for Open Science Hardware","authors":"Julieta Arancio, Mayra Morales Tirado, J. Pearce","doi":"10.38126/jspg210202","DOIUrl":"https://doi.org/10.38126/jspg210202","url":null,"abstract":"Changes in science funders’ mandates have resulted in advances in open access to data, software, and publications. Research capacity, however, is still unequally distributed worldwide, hindering the impact of these efforts. We argue that to achieve the Sustainable Development Goals (SDGs), open science policies must shift focus from products to processes and infrastructure, including access to open source scientific equipment. This article discusses how conventional, black box, proprietary approaches to science hardware reinforce inequalities in science and slow down innovation everywhere, while also representing a threat to research capacity strengthening efforts. We offer science funders three policy recommendations to promote open science hardware for research capacity strengthening: a) incorporating open hardware into existing open science mandates, b) incentivizing demand through technology transfer and procurement mechanisms, c) promoting the adoption of open hardware in national and regional service centers. We expect this agenda to foster capacity building towards enabling the more equitable and efficient science needed to achieve the SDGs.","PeriodicalId":222224,"journal":{"name":"Journal of Science Policy & Governance","volume":"36 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"133992108","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Wastewater-based epidemiology (WBE) is a public health tool that enables informed, targeted responses to crises such as disease outbreaks and epidemics. In this paper, we discuss the significance of the practice of open science in generating social impact through policy decisions on day-to-day pandemic management when public institutions adopt WBE as part of the COVID-19 pandemic response. Further, we examine how open science helped communicate the importance and credibility of cutting-edge science to the public through continuous engagement using publicly available data, scientific communication interfaced through mass media, and information sharing via a live dashboard. Critical to the translation of science to policy was the philosophy of complete access to the entire knowledge generation process, results, and findings. We analyze the success of such an initiative in the city of Bengaluru in India amidst other academic studies in the country with regard to their translation to policy engagement. We posit that Bengaluru’s success may be due to the presence of an open science ethos, and multi-stakeholder inputs for knowledge creation and dissemination, leading to nuanced science communication which is empowering rather than patronizing. We further suggest policy-level recommendations for the incorporation of WBE as a public health surveillance tool and impress upon the interweaving of open science as part of scientific practice and its broader uptake by the policy ecosystem.
{"title":"Wastewater Surveillance for Public Health: Beyond the Pandemic","authors":"Vishvak Kannan, Saveetha Meganathan, R. Mishra","doi":"10.38126/jspg210207","DOIUrl":"https://doi.org/10.38126/jspg210207","url":null,"abstract":"Wastewater-based epidemiology (WBE) is a public health tool that enables informed, targeted responses to crises such as disease outbreaks and epidemics. In this paper, we discuss the significance of the practice of open science in generating social impact through policy decisions on day-to-day pandemic management when public institutions adopt WBE as part of the COVID-19 pandemic response. Further, we examine how open science helped communicate the importance and credibility of cutting-edge science to the public through continuous engagement using publicly available data, scientific communication interfaced through mass media, and information sharing via a live dashboard. Critical to the translation of science to policy was the philosophy of complete access to the entire knowledge generation process, results, and findings. We analyze the success of such an initiative in the city of Bengaluru in India amidst other academic studies in the country with regard to their translation to policy engagement. We posit that Bengaluru’s success may be due to the presence of an open science ethos, and multi-stakeholder inputs for knowledge creation and dissemination, leading to nuanced science communication which is empowering rather than patronizing. We further suggest policy-level recommendations for the incorporation of WBE as a public health surveillance tool and impress upon the interweaving of open science as part of scientific practice and its broader uptake by the policy ecosystem.","PeriodicalId":222224,"journal":{"name":"Journal of Science Policy & Governance","volume":"43 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"128941668","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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