Bobbie Farsides
Dados Biográficos
| ID | 247402 |
|---|---|
| NOME | Bobbie Farsides |
| PRENOMES | Bobbie |
| SOBRENOME | Farsides |
| ASSINATURA | FARSIDES B |
| AFILIAÇÕES | Brighton and Sussex Medical School |
| ORCID | 0000-0002-5477-0612 |
| VERIFICADO | Sim |
| TOTAL DE OBRAS | 27 |
| TOTAL DE CITAÇÕES | 253 |
| TOTAL COMO AUTOR | 27 |
| TOTAL COMO EDITOR | 0 |
| PRIMEIRO ANO DE PUBLICAÇÃO | 2001 |
| ANO MAIS RECENTE DE PUBLICAÇÃO | 2025 |
| ÍNDICE H | 8 |
Ethical preparedness and developments in genomic healthcare
Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation to planned for and desired interventions resulting from healthcare innovations. We describe ethical preparedness as a necessary component for the successful delivery of novel healthcare innovations…
Mail art methods and the social and cultural geographies of families affected by rare disease
Composition and capacity of Institutional Review Boards, and challenges experienced by members in ethics review processes in Addis Ababa, Ethiopia
Few studies in sub‐Saharan Africa evaluate Institutional Review Boards (IRBs) capacity. The study aims to explore the composition of IRBs, training, and challenges experienced in the ethics review processes by members of research institutions and universities in Addis Ababa, Ethiopia. Our findings indicate that most IRBs members were trained on research ethics and good clinical practice. However, majority perceived the trainings as basic. IRB mem…
Crafting representations of rare disease
The opportunity to convey topics and feelings through a medium which was both tentatively open yet conceptually complex allowed the broaching of sensitive and elusive themes in a safe, expressive, and non-threatening manner
Stop-motion storytelling
Qualitative research is increasingly challenged to think creatively and critically about how accounts of lived experience might be collected, collated, curated, and disseminated. In this article, we consider how forms of participatory filmmaking and animation might assist in the development of methodologies appropriate to accessing, revealing and representing the social worlds of families affected by rare genetic conditions. We trace how particip…
Writing the worlds of genomic medicine
The diagnostic and treatment possibilities made possible by the development and subsequent mainstreaming of clinical genomics services have the potential to profoundly change the experiences of families affected by rare genetic conditions. Understanding the potentials of genomic medicine requires that we consider the perspectives of those who engage with such services; there are substantial social implications involved. There are increasing calls…
Imagining genomic medicine futures in primary care
Genomic medicine has captured the imaginations of policymakers and medical scientists keen to harness its health and economic potentials. In 2012, the UK government launched the 100,000 Genomes Project to sequence the genomes of British National Health Service (NHS) patients, laying the ground for mainstreaming genomic medicine in the NHS and developing the UK's genomics industry. However, the recent research and reports from national bodies moni…
Commentary 2
Genomics England’s implementation of its public engagement strategy
The United Kingdom’s 100,000 Genomes Project has the aim of sequencing 100,000 genomes from National Health Service patients such that whole genome sequencing becomes routine clinical practice. It also has a research-focused goal to provide data for scientific discovery. Genomics England is the limited company established by the Department of Health to deliver the project. As an innovative scientific/clinical venture, it is interesting to conside…
The UK’s 100,000 Genomes Project
The UK's 100,000 Genomes Project has the aim of sequencing 100,000 genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome sequencing becomes routine clinical practice in the UK. Policymakers claim that the project will revolutionize NHS care. We wished to explore the 100,000 Genomes Project, and in particular, the extent to which policymaker claims have helped or hindered the w…
Trust Me, I’m an Artist
Trust Me, I’m an Artist (TMIAA) is a European-based project devoted to developing “Ethical Frameworks for Artists, Cultural Institutions and Audiences Engaged in the Challenges of Creating and Experiencing New Art Forms in Biotechnology and Biomedicine.” As such it brings together a wide variety of interested parties to debate and, hopefully to some extent, resolve ethical issues arising at the intersection of art, science and biomedicine. Leonar…
Tailoring Information Provision and Consent Processes to Research Contexts
Guidance requires that consent processes for research be appropriately tailored to their cultural context. This paper discusses the use of rapid assessments to identify cultural and ethical issues arising when explaining research in studies in The Gambia and Ethiopia. The assessments provided insights into appropriate ways of providing information to minimize the risk of stigmatizing vulnerable research populations; research participants' views a…
Embryo futures and stem cell research
In the social worlds of assisted conception and stem cell science, uncertainties proliferate and particular framings of the future may be highly strategic. In this article we explore meanings and articulations of the future using data from our study of ethical and social issues implicated by the donation of embryos to human embryonic stem cell research in three linked assisted conception units and stem cell laboratories in the UK. Framings of the…
Fresh or frozen? Classifying 'spare' embryos for donation to human embryonic stem cell research
The embryo as moral work object
We report on one aspect of a study that explored the views and experiences of practitioners and scientists on social, ethical and clinical dilemmas encountered when working in the field of preimplantation genetic diagnosis (PGD) for serious genetic disorders. The study produced an ethnography based on observation, interviews and ethics discussion groups with staff from two PGD/IVF Units in the UK. We focus here on staff perceptions of work with e…
From Core Set to Assemblage
From Core Set to Assemblage: On the Dynamics of Exclusion and Inclusion in the Failure to Derive Beta Cells from Embryonic Stem Cells** In this paper, we examine the controversy surrounding the Lumelsky protocol (which potentially could have transformed the procedures for differentiating embryonic stem cells into beta cells for diabetes treatment). The protocol is analyzed initially using Collins’ core set model to show how the controversy over e…
Remaking the body? Scientists' genetic discourses and practices as examples of changing expectations on embryonic stem cell therapy for diabetes
AbstratIn this paper we discuss genetic discourses and practices in stem cell science. We report on how biomedical scientists, in both the UK and the USA, view the scientific literature and their own experimental research in the emerging field of human embryonic stem (hES) cells. We focus on the genetic manipulation of stem cells to make specialized (beta) cells as a potential cure for diabetes. We draw on Gieryn's notion of boundary work as an a…
Facilitating choice, framing choice
Choosing embryos
The technique of preimplantation genetic diagnosis (PGD) is commonly explained as a way of checking the genes of embryos produced by IVF for serious genetic diseases. However, complex accounts of this technique emerged during ethics discussion groups held for PGD staff. These form part of a study exploring the social processes, meanings and institutions that frame and produce 'ethical problems' for practitioners, scientists and others working in …
From bench to bedside? Biomedical scientists' expectations of stem cell science as a future therapy for diabetes
Social welfare, genetic welfare? Boundary-work in the IVF/PGD clinic
Ethical boundary-work in the embryonic stem cell laboratory
Most accounts of the ethics of stem cell research are de- contextualised reviews of the ethical and legal literature. In this chapter we present a socially embedded account of some of the ethical implications of stem cell research, from the perspectives of scientists directly involved in this area. Based on an ethnography of two leading embryonic stem cell laboratories in the UK, our data form part of the findings from a larger project mapping th…
Practitioners' Views about Equity within Prenatal Services
The British National Health Service (NHS) is based on principles of equal access, treatment and outcomes.This article reviews health professionals' aims to provide equitable prenatal services and their views on whether women could be equal in their access to services, understanding during choice-making, and satisfaction about their care. Inequalities which compromise equity, conflicting meanings of equity, and the contribution of in-hospital ethi…
'Drawing the line' in prenatal screening and testing
As the number of fetal conditions which can potentially be screened and tested for rises, the question of whether limits should be set around prenatal screening is a timely one. There are many areas of disagreement as to whether a line can, or should be drawn, about what constitutes a 'severe' handicap, and about who should be involved in making such decisions. This paper reports on how health practitioners involved in prenatal screening discusse…
Too many choices? Hospital and community staff reflect on the future of prenatal screening
Ethical boundary-work in the embryonic stem cell laboratory
Most accounts of the ethics of stem cell research are de- contextualised reviews of the ethical and legal literature. In this chapter we present a socially embedded account of some of the ethical implications of stem cell research, from the perspectives of scientists directly involved in this area. Based on an ethnography of two leading embryonic stem cell laboratories in the UK, our data form part of the findings from a larger project mapping th…
From bench to bedside? Biomedical scientists' expectations of stem cell science as a future therapy for diabetes
Is nondirectiveness possible within the context of antenatal screening and testing
Social welfare, genetic welfare? Boundary-work in the IVF/PGD clinic
The embryo as moral work object
We report on one aspect of a study that explored the views and experiences of practitioners and scientists on social, ethical and clinical dilemmas encountered when working in the field of preimplantation genetic diagnosis (PGD) for serious genetic disorders. The study produced an ethnography based on observation, interviews and ethics discussion groups with staff from two PGD/IVF Units in the UK. We focus here on staff perceptions of work with e…
Too many choices? Hospital and community staff reflect on the future of prenatal screening
Choosing embryos
The technique of preimplantation genetic diagnosis (PGD) is commonly explained as a way of checking the genes of embryos produced by IVF for serious genetic diseases. However, complex accounts of this technique emerged during ethics discussion groups held for PGD staff. These form part of a study exploring the social processes, meanings and institutions that frame and produce 'ethical problems' for practitioners, scientists and others working in …
Fresh or frozen? Classifying 'spare' embryos for donation to human embryonic stem cell research
Facilitating choice, framing choice
Stop-motion storytelling
Qualitative research is increasingly challenged to think creatively and critically about how accounts of lived experience might be collected, collated, curated, and disseminated. In this article, we consider how forms of participatory filmmaking and animation might assist in the development of methodologies appropriate to accessing, revealing and representing the social worlds of families affected by rare genetic conditions. We trace how particip…
Imagining genomic medicine futures in primary care
Genomic medicine has captured the imaginations of policymakers and medical scientists keen to harness its health and economic potentials. In 2012, the UK government launched the 100,000 Genomes Project to sequence the genomes of British National Health Service (NHS) patients, laying the ground for mainstreaming genomic medicine in the NHS and developing the UK's genomics industry. However, the recent research and reports from national bodies moni…
Writing the worlds of genomic medicine
The diagnostic and treatment possibilities made possible by the development and subsequent mainstreaming of clinical genomics services have the potential to profoundly change the experiences of families affected by rare genetic conditions. Understanding the potentials of genomic medicine requires that we consider the perspectives of those who engage with such services; there are substantial social implications involved. There are increasing calls…
Embryo futures and stem cell research
In the social worlds of assisted conception and stem cell science, uncertainties proliferate and particular framings of the future may be highly strategic. In this article we explore meanings and articulations of the future using data from our study of ethical and social issues implicated by the donation of embryos to human embryonic stem cell research in three linked assisted conception units and stem cell laboratories in the UK. Framings of the…
Practitioners' Views about Equity within Prenatal Services
The British National Health Service (NHS) is based on principles of equal access, treatment and outcomes.This article reviews health professionals' aims to provide equitable prenatal services and their views on whether women could be equal in their access to services, understanding during choice-making, and satisfaction about their care. Inequalities which compromise equity, conflicting meanings of equity, and the contribution of in-hospital ethi…
Crafting representations of rare disease
The opportunity to convey topics and feelings through a medium which was both tentatively open yet conceptually complex allowed the broaching of sensitive and elusive themes in a safe, expressive, and non-threatening manner
Tailoring Information Provision and Consent Processes to Research Contexts
Guidance requires that consent processes for research be appropriately tailored to their cultural context. This paper discusses the use of rapid assessments to identify cultural and ethical issues arising when explaining research in studies in The Gambia and Ethiopia. The assessments provided insights into appropriate ways of providing information to minimize the risk of stigmatizing vulnerable research populations; research participants' views a…
Conflicting perceptions of the fetus
Different constructions of the fetus lie at the centre of reproductive, abortion and disability politics. Recent developments mean that, within the same hospital, a fetus may be perceived in contrasting and potentially conflicting ways. It is also argued that the status given to the fetus is directly relevant to the status given to pregnant women. During group discussions facilitated by an ethicist, health-care staff highlighted various perceptio…
'Drawing the line' in prenatal screening and testing
As the number of fetal conditions which can potentially be screened and tested for rises, the question of whether limits should be set around prenatal screening is a timely one. There are many areas of disagreement as to whether a line can, or should be drawn, about what constitutes a 'severe' handicap, and about who should be involved in making such decisions. This paper reports on how health practitioners involved in prenatal screening discusse…
Too many choices? Hospital and community staff reflect on the future of prenatal screening
Is nondirectiveness possible within the context of antenatal screening and testing
Practitioners' Views about Equity within Prenatal Services
The British National Health Service (NHS) is based on principles of equal access, treatment and outcomes.This article reviews health professionals' aims to provide equitable prenatal services and their views on whether women could be equal in their access to services, understanding during choice-making, and satisfaction about their care. Inequalities which compromise equity, conflicting meanings of equity, and the contribution of in-hospital ethi…
From bench to bedside? Biomedical scientists' expectations of stem cell science as a future therapy for diabetes
Social welfare, genetic welfare? Boundary-work in the IVF/PGD clinic
Ethical boundary-work in the embryonic stem cell laboratory
Most accounts of the ethics of stem cell research are de- contextualised reviews of the ethical and legal literature. In this chapter we present a socially embedded account of some of the ethical implications of stem cell research, from the perspectives of scientists directly involved in this area. Based on an ethnography of two leading embryonic stem cell laboratories in the UK, our data form part of the findings from a larger project mapping th…
From Core Set to Assemblage
From Core Set to Assemblage: On the Dynamics of Exclusion and Inclusion in the Failure to Derive Beta Cells from Embryonic Stem Cells** In this paper, we examine the controversy surrounding the Lumelsky protocol (which potentially could have transformed the procedures for differentiating embryonic stem cells into beta cells for diabetes treatment). The protocol is analyzed initially using Collins’ core set model to show how the controversy over e…
Remaking the body? Scientists' genetic discourses and practices as examples of changing expectations on embryonic stem cell therapy for diabetes
AbstratIn this paper we discuss genetic discourses and practices in stem cell science. We report on how biomedical scientists, in both the UK and the USA, view the scientific literature and their own experimental research in the emerging field of human embryonic stem (hES) cells. We focus on the genetic manipulation of stem cells to make specialized (beta) cells as a potential cure for diabetes. We draw on Gieryn's notion of boundary work as an a…
Facilitating choice, framing choice
Choosing embryos
The technique of preimplantation genetic diagnosis (PGD) is commonly explained as a way of checking the genes of embryos produced by IVF for serious genetic diseases. However, complex accounts of this technique emerged during ethics discussion groups held for PGD staff. These form part of a study exploring the social processes, meanings and institutions that frame and produce 'ethical problems' for practitioners, scientists and others working in …
The embryo as moral work object
We report on one aspect of a study that explored the views and experiences of practitioners and scientists on social, ethical and clinical dilemmas encountered when working in the field of preimplantation genetic diagnosis (PGD) for serious genetic disorders. The study produced an ethnography based on observation, interviews and ethics discussion groups with staff from two PGD/IVF Units in the UK. We focus here on staff perceptions of work with e…
Fresh or frozen? Classifying 'spare' embryos for donation to human embryonic stem cell research
Tailoring Information Provision and Consent Processes to Research Contexts
Guidance requires that consent processes for research be appropriately tailored to their cultural context. This paper discusses the use of rapid assessments to identify cultural and ethical issues arising when explaining research in studies in The Gambia and Ethiopia. The assessments provided insights into appropriate ways of providing information to minimize the risk of stigmatizing vulnerable research populations; research participants' views a…
Embryo futures and stem cell research
In the social worlds of assisted conception and stem cell science, uncertainties proliferate and particular framings of the future may be highly strategic. In this article we explore meanings and articulations of the future using data from our study of ethical and social issues implicated by the donation of embryos to human embryonic stem cell research in three linked assisted conception units and stem cell laboratories in the UK. Framings of the…
Trust Me, I’m an Artist
Trust Me, I’m an Artist (TMIAA) is a European-based project devoted to developing “Ethical Frameworks for Artists, Cultural Institutions and Audiences Engaged in the Challenges of Creating and Experiencing New Art Forms in Biotechnology and Biomedicine.” As such it brings together a wide variety of interested parties to debate and, hopefully to some extent, resolve ethical issues arising at the intersection of art, science and biomedicine. Leonar…
The UK’s 100,000 Genomes Project
The UK's 100,000 Genomes Project has the aim of sequencing 100,000 genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome sequencing becomes routine clinical practice in the UK. Policymakers claim that the project will revolutionize NHS care. We wished to explore the 100,000 Genomes Project, and in particular, the extent to which policymaker claims have helped or hindered the w…
Genomics England’s implementation of its public engagement strategy
The United Kingdom’s 100,000 Genomes Project has the aim of sequencing 100,000 genomes from National Health Service patients such that whole genome sequencing becomes routine clinical practice. It also has a research-focused goal to provide data for scientific discovery. Genomics England is the limited company established by the Department of Health to deliver the project. As an innovative scientific/clinical venture, it is interesting to conside…
Commentary 2
Imagining genomic medicine futures in primary care
Genomic medicine has captured the imaginations of policymakers and medical scientists keen to harness its health and economic potentials. In 2012, the UK government launched the 100,000 Genomes Project to sequence the genomes of British National Health Service (NHS) patients, laying the ground for mainstreaming genomic medicine in the NHS and developing the UK's genomics industry. However, the recent research and reports from national bodies moni…
Writing the worlds of genomic medicine
The diagnostic and treatment possibilities made possible by the development and subsequent mainstreaming of clinical genomics services have the potential to profoundly change the experiences of families affected by rare genetic conditions. Understanding the potentials of genomic medicine requires that we consider the perspectives of those who engage with such services; there are substantial social implications involved. There are increasing calls…
Composition and capacity of Institutional Review Boards, and challenges experienced by members in ethics review processes in Addis Ababa, Ethiopia
Few studies in sub‐Saharan Africa evaluate Institutional Review Boards (IRBs) capacity. The study aims to explore the composition of IRBs, training, and challenges experienced in the ethics review processes by members of research institutions and universities in Addis Ababa, Ethiopia. Our findings indicate that most IRBs members were trained on research ethics and good clinical practice. However, majority perceived the trainings as basic. IRB mem…
Crafting representations of rare disease
The opportunity to convey topics and feelings through a medium which was both tentatively open yet conceptually complex allowed the broaching of sensitive and elusive themes in a safe, expressive, and non-threatening manner
Stop-motion storytelling
Qualitative research is increasingly challenged to think creatively and critically about how accounts of lived experience might be collected, collated, curated, and disseminated. In this article, we consider how forms of participatory filmmaking and animation might assist in the development of methodologies appropriate to accessing, revealing and representing the social worlds of families affected by rare genetic conditions. We trace how particip…
Sociology (19 obras) · Political science (17 obras) · Biology (12 obras) · Law (12 obras) · Medicine (12 obras) · Engineering (11 obras) · Ethics and Legal Issues in Pediatric Healthcare (11 obras) · Public relations (11 obras) · Computer Science (10 obras) · Psychology (10 obras)