Jane Kaye
Dados Biográficos
| ID | 3930842 |
|---|---|
| NOME | Jane Kaye |
| PRENOMES | Jane |
| SOBRENOME | Kaye |
| ASSINATURA | KAYE J |
| AFILIAÇÕES | University of Oxford |
| VERIFICADO | Não |
| TOTAL DE OBRAS | 15 |
| TOTAL DE CITAÇÕES | 16 |
| TOTAL COMO AUTOR | 15 |
| TOTAL COMO EDITOR | 0 |
| PRIMEIRO ANO DE PUBLICAÇÃO | 2000 |
| ANO MAIS RECENTE DE PUBLICAÇÃO | 2026 |
| ÍNDICE H | 2 |
Ethics Review of AI research
The recent advancements in artificial intelligence (AI), and data science more broadly, have led to a proliferation of new methods and tools, such as machine learning (ML), that are used in all kinds of scientific research, from biomedical research through to environmental and education research. Research ethics review bodies are increasingly required to review AI research protocols that cover these different fields of enquiry. Questions have bee…
Contractual Mechanisms for Securing the Public Interest in Data Sharing in Public-Private Health Research Partnerships
Public private partnerships (PPPs) are increasingly common in health research, with large European investment over the last 20 years and renewed focus in the wake of the global health crisis COVID-19. PPPs have been used for health research that seeks to collect, analyse and share personal data from research participants, often on the basis of informed or broad consent. PPPs are underpinned by contracts, both to govern the use of data and samples…
A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by Children’s Social Workers in Child Safeguarding Scenarios
Literature suggests that, as parents, people with intellectual disabilities experience disproportionately high rates of child removal compared to other groups. A factorial survey of 191 children’s social workers investigated the effect of disclosing parental intellectual disability (ID) upon risk assessments in a range of hypothetical child safeguarding scenarios. The case scenarios depicted a range of child safeguarding situations and parents’ I…
A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by Children's Social Workers in Child Safeguarding Scenarios
The British Journal of Social Work, (2020) 50, 1185–1200. https://doi.org/10.1093/bjsw/bcz076 In the above article, the title was originally published as ‘A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by Children's Social Worker in Child Safeguarding Scenarios.’ ‘Social Worker’ has now been made plural. The author apologises for this error.
Governance of research consortia
Responsible Research and Innovation (‘RRI’) is a cross-cutting priority for scientific research in the European Union and beyond. This paper considers whether the way such research is organised and delivered lends itself to the aims of RRI. We focus particularly on international consortia, which have emerged as a common model to organise large-scale, multi-disciplinary research in contemporary biomedical science. Typically, these consortia operat…
Desiderata for digital consent in genomic research
Herein, we describe the characterization of a Digital Consent (DC) System to support current ethical-legal issues associated with challenges posed by informed consent for genomic research. A potential solution to support ongoing interaction with patients and allow control over how their data and samples are being used in genomic research can be Digital Consent based. But there are other challenges that need to be addressed, such as incidental fin…
The governance structure for data access in the Direct consortium
Biomedical research projects involving multiple partners from public and private sectors require coherent internal governance mechanisms to engender good working relationships. The DIRECT project is an example of such a venture, funded by the Innovative Medicines Initiative Joint Undertaking (IMI JU). This paper describes the data access policy that was developed within DIRECT to support data access and sharing, via the establishment of a 3-tiere…
Regulating human stem cell research and therapy in low- and middle-income countries
Many “rising powers” such as India, China, Argentina, Singapore, and Brazil are investing in stem cell technology, joining the traditional leaders in the field, such as the UK, Germany, USA, and Japan. Malaysia is also entering this sector because of the potential medical and economic benefits that the use of stem cell technologies could provide. Like other countries, Malaysia faces the challenge of how to encourage scientific progress and innova…
Dynamic consent
Biomedical research is being transformed through the application of information technologies that allow ever greater amounts of data to be shared on an unprecedented scale. However, the methods for involving participants have not kept pace with changes in research capability. In an era when information is shared digitally at the global level, mechanisms of informed consent remain static, paper-based and organised around national boundaries and le…
Pop-Up’ Governance
Innovations in information technologies have facilitated the development of new styles of research networks and forms of governance. This is evident in genomics where increasingly, research is carried out by large, interdisciplinary consortia focussing on a specific research endeavour. The UK10K project is an example of a human genomics consortium funded to provide insights into the genomics of rare conditions, and establish a community resource …
The evolution of withdrawal
The right to withdraw from research, along with the necessity of adequately informed consent, is at the heart of the post-Nuremburg code of ethical safeguards in biomedical research on human participants. As biomedical research moves away from direct interventional studies towards research using networks of linked human tissue samples and data, however, questions arise about what withdrawal can and should mean in these new contexts. Some of the m…
From consent to institutions
Public Health Genomics (PHG) and Public Participation
Large-scale population biobanks, which aim to collect biological tissues, personal health information, and genomic data, are being introduced worldwide with the promise of increasing knowledge on chronic diseases such as diabetes and heart disease. Experts recognize the need for public participation to address the many social, legal and ethical complexities raised by the introduction of biobanks for public health research. However many researcher…
Governing Genetic Databases
This paper reports on the initial findings of an interdisciplinary research project on the governance of human genetic databases in England and Wales. The number of biosample and information collections has expanded, yet considerable legal uncertainty surrounds their definition, collection, storage, management, and use which could inhibit research and clinical practice, while failing to protect the rights and interests of all stakeholders. We rep…
The use of large biological sample collections in genetics research
This is a shortened version of the background briefing and discussion paper commissioned by the Wellcome Trust in November 1999. The original paper was called 'The Use of Biological Sample Collections and Personal medical Information in Human Genetics Research-Issues for Social Science Research and Public Policy'. This paper provides a description of some of the current research using biological samples and the new developments in this field. It …
From consent to institutions
Governing Genetic Databases
This paper reports on the initial findings of an interdisciplinary research project on the governance of human genetic databases in England and Wales. The number of biosample and information collections has expanded, yet considerable legal uncertainty surrounds their definition, collection, storage, management, and use which could inhibit research and clinical practice, while failing to protect the rights and interests of all stakeholders. We rep…
The governance structure for data access in the Direct consortium
Biomedical research projects involving multiple partners from public and private sectors require coherent internal governance mechanisms to engender good working relationships. The DIRECT project is an example of such a venture, funded by the Innovative Medicines Initiative Joint Undertaking (IMI JU). This paper describes the data access policy that was developed within DIRECT to support data access and sharing, via the establishment of a 3-tiere…
Pop-Up’ Governance
Innovations in information technologies have facilitated the development of new styles of research networks and forms of governance. This is evident in genomics where increasingly, research is carried out by large, interdisciplinary consortia focussing on a specific research endeavour. The UK10K project is an example of a human genomics consortium funded to provide insights into the genomics of rare conditions, and establish a community resource …
The evolution of withdrawal
The right to withdraw from research, along with the necessity of adequately informed consent, is at the heart of the post-Nuremburg code of ethical safeguards in biomedical research on human participants. As biomedical research moves away from direct interventional studies towards research using networks of linked human tissue samples and data, however, questions arise about what withdrawal can and should mean in these new contexts. Some of the m…
The use of large biological sample collections in genetics research
This is a shortened version of the background briefing and discussion paper commissioned by the Wellcome Trust in November 1999. The original paper was called 'The Use of Biological Sample Collections and Personal medical Information in Human Genetics Research-Issues for Social Science Research and Public Policy'. This paper provides a description of some of the current research using biological samples and the new developments in this field. It …
Governing Genetic Databases
This paper reports on the initial findings of an interdisciplinary research project on the governance of human genetic databases in England and Wales. The number of biosample and information collections has expanded, yet considerable legal uncertainty surrounds their definition, collection, storage, management, and use which could inhibit research and clinical practice, while failing to protect the rights and interests of all stakeholders. We rep…
Public Health Genomics (PHG) and Public Participation
Large-scale population biobanks, which aim to collect biological tissues, personal health information, and genomic data, are being introduced worldwide with the promise of increasing knowledge on chronic diseases such as diabetes and heart disease. Experts recognize the need for public participation to address the many social, legal and ethical complexities raised by the introduction of biobanks for public health research. However many researcher…
From consent to institutions
The evolution of withdrawal
The right to withdraw from research, along with the necessity of adequately informed consent, is at the heart of the post-Nuremburg code of ethical safeguards in biomedical research on human participants. As biomedical research moves away from direct interventional studies towards research using networks of linked human tissue samples and data, however, questions arise about what withdrawal can and should mean in these new contexts. Some of the m…
Dynamic consent
Biomedical research is being transformed through the application of information technologies that allow ever greater amounts of data to be shared on an unprecedented scale. However, the methods for involving participants have not kept pace with changes in research capability. In an era when information is shared digitally at the global level, mechanisms of informed consent remain static, paper-based and organised around national boundaries and le…
Pop-Up’ Governance
Innovations in information technologies have facilitated the development of new styles of research networks and forms of governance. This is evident in genomics where increasingly, research is carried out by large, interdisciplinary consortia focussing on a specific research endeavour. The UK10K project is an example of a human genomics consortium funded to provide insights into the genomics of rare conditions, and establish a community resource …
Regulating human stem cell research and therapy in low- and middle-income countries
Many “rising powers” such as India, China, Argentina, Singapore, and Brazil are investing in stem cell technology, joining the traditional leaders in the field, such as the UK, Germany, USA, and Japan. Malaysia is also entering this sector because of the potential medical and economic benefits that the use of stem cell technologies could provide. Like other countries, Malaysia faces the challenge of how to encourage scientific progress and innova…
Desiderata for digital consent in genomic research
Herein, we describe the characterization of a Digital Consent (DC) System to support current ethical-legal issues associated with challenges posed by informed consent for genomic research. A potential solution to support ongoing interaction with patients and allow control over how their data and samples are being used in genomic research can be Digital Consent based. But there are other challenges that need to be addressed, such as incidental fin…
The governance structure for data access in the Direct consortium
Biomedical research projects involving multiple partners from public and private sectors require coherent internal governance mechanisms to engender good working relationships. The DIRECT project is an example of such a venture, funded by the Innovative Medicines Initiative Joint Undertaking (IMI JU). This paper describes the data access policy that was developed within DIRECT to support data access and sharing, via the establishment of a 3-tiere…
A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by Children’s Social Workers in Child Safeguarding Scenarios
Literature suggests that, as parents, people with intellectual disabilities experience disproportionately high rates of child removal compared to other groups. A factorial survey of 191 children’s social workers investigated the effect of disclosing parental intellectual disability (ID) upon risk assessments in a range of hypothetical child safeguarding scenarios. The case scenarios depicted a range of child safeguarding situations and parents’ I…
A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by Children's Social Workers in Child Safeguarding Scenarios
The British Journal of Social Work, (2020) 50, 1185–1200. https://doi.org/10.1093/bjsw/bcz076 In the above article, the title was originally published as ‘A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by Children's Social Worker in Child Safeguarding Scenarios.’ ‘Social Worker’ has now been made plural. The author apologises for this error.
Governance of research consortia
Responsible Research and Innovation (‘RRI’) is a cross-cutting priority for scientific research in the European Union and beyond. This paper considers whether the way such research is organised and delivered lends itself to the aims of RRI. We focus particularly on international consortia, which have emerged as a common model to organise large-scale, multi-disciplinary research in contemporary biomedical science. Typically, these consortia operat…
Contractual Mechanisms for Securing the Public Interest in Data Sharing in Public-Private Health Research Partnerships
Public private partnerships (PPPs) are increasingly common in health research, with large European investment over the last 20 years and renewed focus in the wake of the global health crisis COVID-19. PPPs have been used for health research that seeks to collect, analyse and share personal data from research participants, often on the basis of informed or broad consent. PPPs are underpinned by contracts, both to govern the use of data and samples…
Ethics Review of AI research
The recent advancements in artificial intelligence (AI), and data science more broadly, have led to a proliferation of new methods and tools, such as machine learning (ML), that are used in all kinds of scientific research, from biomedical research through to environmental and education research. Research ethics review bodies are increasingly required to review AI research protocols that cover these different fields of enquiry. Questions have bee…
Ethics in Clinical Research (11 obras) · Political science (11 obras) · Biomedical Ethics and Regulation (8 obras) · Medicine (8 obras) · Biology (7 obras) · Business (7 obras) · Computer Science (7 obras) · Law (7 obras) · Corporate governance (6 obras) · Public relations (6 obras)