Susan E Kelly
Datos Biográficos
| ID | 209446 |
|---|---|
| NOMBRE | Susan E Kelly |
| NOMBRES | Susan E |
| APELLIDO | Kelly |
| FIRMA | KELLY S E |
| AFILIACIONES | University of Exeter |
| VERIFICADO | No |
| TOTAL DE OBRAS | 17 |
| TOTAL DE CITAS | 137 |
| TOTAL COMO AUTOR | 17 |
| TOTAL COMO EDITOR | 0 |
| PRIMER AÑO DE PUBLICACIÓN | 2001 |
| AÑO MÁS RECIENTE DE PUBLICACIÓN | 2016 |
| ÍNDICE H | 7 |
Controversy goes online
Scientific controversy is increasingly played out via the internet, a technology that is simultaneously content, medium and research infrastructure. Here we analyse material from Wikipedia, focusing on schizophrenia genetics. We find that citation and curation of scientific resources follow a negotiated, ad hoc adherence to Wikipedia rules, are based on limited access to scientific literature, and thus lead to a partially constructed ‘review’ of …
Autobiologies on YouTube
Despite a growing personal genomics market, little is known about how people engage with the possibilities offered by direct-to-consumer (DTC) genetic testing. In order to help address this gap, this study deploys narrative analysis of YouTube videos posted by individuals who have purchased DTC genetic testing for disease. Genetic testing is said to be contributing to new states of illness, where individuals may become "patients-in-waiting." In t…
Public viewpoints on new non-invasive prenatal genetic tests
Prenatal screening programmes have been critiqued for their routine implementation according to clinical rationale without public debate. A new approach, non-invasive prenatal diagnosis (NIPD), promises diagnosis of fetal genetic disorders from a sample of maternal blood without the miscarriage risk of current invasive prenatal tests (e.g. amniocentesis). Little research has investigated the attitudes of wider publics to NIPD. This study used Q-m…
Illness Online
Self-reported data are regarded by medical researchers as invalid and less reliable than data produced by experts in clinical settings, yet individuals can increasingly contribute personal information to medical research through a variety of online platforms. In this article we examine this 'participatory turn' in healthcare research, which claims to challenge conventional delineations of what is valid and reliable for medical practice, by using …
The Gift of Spit (And the Obligation to Return It)
People can now send a sample of their saliva to an internet-based company in order to discover genetic information about themselves. Entering this 'direct-to-consumer' genetic testing (DTC GT) marketplace can result in enticement to engage in various forms of 'participatory' practices, such as taking part in genetic research. In this article, we analyse the research activities of one of the largest and best-known DTC GT companies, 23andMe. 23andM…
Diagnosis as a social determinant
Assisting Reproduction, Testing Genes
Birenbaum-Carmeli, D. and Inhorn, M.C. ( eds ) Assisting Reproduction, Testing Genes: Global Encounters with New Biotechnologies . New York : Berghahn Books , 2009 , 304 pp £55 (hbk ) ISBN 978-1-84545-625-2 . Assisted reproductive technologies (ARTs) have proliferated as new biotechnologies and spread widely across the globe. ARTs now include a host of technologies beyond in vitro fertilisation and directed toward different contexts of infertilit…
Qualitative Interviewing Techniques and Styles
Choosing not to choose
Parents of children with genetic conditions or impairments stand in a unique position with regard to choices and dilemmas posed by prenatal screening and testing options offered to at‐risk parents as a means to a ‘healthy’ baby. This article reports the results of a qualitative study of parents whose children are clients of a state‐wide rural genetic outreach programme in the US. The analysis seeks to connect the lived experience of parents of ch…
Toward an Epistemological Luddism of Bioethics
In the decades since its emergence, bioethics has become successfully integrated, institutionally and culturally, into contemporary processes of biotechnological production. Its success is in large part the result of the development within American bioethics of a strong principlist form that has had considerable influence on bioethics developments regarding biotechnology governance internationally. This article presents a critique of bioethics, d…
Barriers to Care-Seeking for Children’s Oral Health Among Low-Income Caregivers
Objectives. We identified psychosocial, structural, and cultural barriers to seeking dental care among nonutilizing caregivers of Medicaid-enrolled children. Methods. We used Medicaid utilization records to identify utilizing and nonutilizing African American and White caregivers of Medicaid-enrolled children in Jefferson County, Kentucky. We conducted 8 focus groups (N=76) with a stratified random sample of responding caregivers; transcripts wer…
A Different Light
This article explores narratives of parenting a child with impairments for insight into impairment as both a materially and socially meaningful phenomenon. Drawing from in-depth interviews with parents, a narrative approach is employed to explore the ambiguities of human impairment and embodiment as experienced by an intimate other. Parents'stories illustrate impairment as an intersubjective and intercorporeal accomplishment and illustrate multip…
Public Bioethics and Publics
Public bioethics bodies are used internationally as institutions with the declared aims of facilitating societal debate and providing policy advice in certain areas of scientific inquiry raising questions of values and legitimate science. In the United States, bioethical experts in these institutions use the language of consensus building to justify and define the outcome of the enterprise. However, the implications of public bioethics at science…
Bioethics and rural health
New' genetics meets the old underclass
Ethical and practical issues around genetic research are of major international concern, both in academia and in the public domain. Questions concerning what interventions are possible and appropriate with the increasing amount of genetic information available; challenge our understandings of ourselves, our health and wellbeing, and the role of medical ethics, public health, surveillance and risk. However there has been little reflection on the s…
Redesigning Life
Genetic Maps and Human Imaginations
Scientists are racing to unravel the code of life in our DNA sequences. But once we know the code, will we know what life means? Will we know what to do with the powerful information we will have? Barbara Katz Rothman examines the current trends and applications of genetics research on race, illness and procreation. She explores new genetics in the light of her work as a sociologist who has studied motherhood and women's experiences with prenatal…
The Gift of Spit (And the Obligation to Return It)
People can now send a sample of their saliva to an internet-based company in order to discover genetic information about themselves. Entering this 'direct-to-consumer' genetic testing (DTC GT) marketplace can result in enticement to engage in various forms of 'participatory' practices, such as taking part in genetic research. In this article, we analyse the research activities of one of the largest and best-known DTC GT companies, 23andMe. 23andM…
Choosing not to choose
Parents of children with genetic conditions or impairments stand in a unique position with regard to choices and dilemmas posed by prenatal screening and testing options offered to at‐risk parents as a means to a ‘healthy’ baby. This article reports the results of a qualitative study of parents whose children are clients of a state‐wide rural genetic outreach programme in the US. The analysis seeks to connect the lived experience of parents of ch…
Public Bioethics and Publics
Public bioethics bodies are used internationally as institutions with the declared aims of facilitating societal debate and providing policy advice in certain areas of scientific inquiry raising questions of values and legitimate science. In the United States, bioethical experts in these institutions use the language of consensus building to justify and define the outcome of the enterprise. However, the implications of public bioethics at science…
Autobiologies on YouTube
Despite a growing personal genomics market, little is known about how people engage with the possibilities offered by direct-to-consumer (DTC) genetic testing. In order to help address this gap, this study deploys narrative analysis of YouTube videos posted by individuals who have purchased DTC genetic testing for disease. Genetic testing is said to be contributing to new states of illness, where individuals may become "patients-in-waiting." In t…
Bioethics and rural health
Illness Online
Self-reported data are regarded by medical researchers as invalid and less reliable than data produced by experts in clinical settings, yet individuals can increasingly contribute personal information to medical research through a variety of online platforms. In this article we examine this 'participatory turn' in healthcare research, which claims to challenge conventional delineations of what is valid and reliable for medical practice, by using …
A Different Light
This article explores narratives of parenting a child with impairments for insight into impairment as both a materially and socially meaningful phenomenon. Drawing from in-depth interviews with parents, a narrative approach is employed to explore the ambiguities of human impairment and embodiment as experienced by an intimate other. Parents'stories illustrate impairment as an intersubjective and intercorporeal accomplishment and illustrate multip…
Diagnosis as a social determinant
Barriers to Care-Seeking for Children’s Oral Health Among Low-Income Caregivers
Objectives. We identified psychosocial, structural, and cultural barriers to seeking dental care among nonutilizing caregivers of Medicaid-enrolled children. Methods. We used Medicaid utilization records to identify utilizing and nonutilizing African American and White caregivers of Medicaid-enrolled children in Jefferson County, Kentucky. We conducted 8 focus groups (N=76) with a stratified random sample of responding caregivers; transcripts wer…
Genetic Maps and Human Imaginations
Scientists are racing to unravel the code of life in our DNA sequences. But once we know the code, will we know what life means? Will we know what to do with the powerful information we will have? Barbara Katz Rothman examines the current trends and applications of genetics research on race, illness and procreation. She explores new genetics in the light of her work as a sociologist who has studied motherhood and women's experiences with prenatal…
New' genetics meets the old underclass
Ethical and practical issues around genetic research are of major international concern, both in academia and in the public domain. Questions concerning what interventions are possible and appropriate with the increasing amount of genetic information available; challenge our understandings of ourselves, our health and wellbeing, and the role of medical ethics, public health, surveillance and risk. However there has been little reflection on the s…
Redesigning Life
Public Bioethics and Publics
Public bioethics bodies are used internationally as institutions with the declared aims of facilitating societal debate and providing policy advice in certain areas of scientific inquiry raising questions of values and legitimate science. In the United States, bioethical experts in these institutions use the language of consensus building to justify and define the outcome of the enterprise. However, the implications of public bioethics at science…
Bioethics and rural health
Barriers to Care-Seeking for Children’s Oral Health Among Low-Income Caregivers
Objectives. We identified psychosocial, structural, and cultural barriers to seeking dental care among nonutilizing caregivers of Medicaid-enrolled children. Methods. We used Medicaid utilization records to identify utilizing and nonutilizing African American and White caregivers of Medicaid-enrolled children in Jefferson County, Kentucky. We conducted 8 focus groups (N=76) with a stratified random sample of responding caregivers; transcripts wer…
A Different Light
This article explores narratives of parenting a child with impairments for insight into impairment as both a materially and socially meaningful phenomenon. Drawing from in-depth interviews with parents, a narrative approach is employed to explore the ambiguities of human impairment and embodiment as experienced by an intimate other. Parents'stories illustrate impairment as an intersubjective and intercorporeal accomplishment and illustrate multip…
Toward an Epistemological Luddism of Bioethics
In the decades since its emergence, bioethics has become successfully integrated, institutionally and culturally, into contemporary processes of biotechnological production. Its success is in large part the result of the development within American bioethics of a strong principlist form that has had considerable influence on bioethics developments regarding biotechnology governance internationally. This article presents a critique of bioethics, d…
Choosing not to choose
Parents of children with genetic conditions or impairments stand in a unique position with regard to choices and dilemmas posed by prenatal screening and testing options offered to at‐risk parents as a means to a ‘healthy’ baby. This article reports the results of a qualitative study of parents whose children are clients of a state‐wide rural genetic outreach programme in the US. The analysis seeks to connect the lived experience of parents of ch…
Qualitative Interviewing Techniques and Styles
Assisting Reproduction, Testing Genes
Birenbaum-Carmeli, D. and Inhorn, M.C. ( eds ) Assisting Reproduction, Testing Genes: Global Encounters with New Biotechnologies . New York : Berghahn Books , 2009 , 304 pp £55 (hbk ) ISBN 978-1-84545-625-2 . Assisted reproductive technologies (ARTs) have proliferated as new biotechnologies and spread widely across the globe. ARTs now include a host of technologies beyond in vitro fertilisation and directed toward different contexts of infertilit…
The Gift of Spit (And the Obligation to Return It)
People can now send a sample of their saliva to an internet-based company in order to discover genetic information about themselves. Entering this 'direct-to-consumer' genetic testing (DTC GT) marketplace can result in enticement to engage in various forms of 'participatory' practices, such as taking part in genetic research. In this article, we analyse the research activities of one of the largest and best-known DTC GT companies, 23andMe. 23andM…
Diagnosis as a social determinant
Public viewpoints on new non-invasive prenatal genetic tests
Prenatal screening programmes have been critiqued for their routine implementation according to clinical rationale without public debate. A new approach, non-invasive prenatal diagnosis (NIPD), promises diagnosis of fetal genetic disorders from a sample of maternal blood without the miscarriage risk of current invasive prenatal tests (e.g. amniocentesis). Little research has investigated the attitudes of wider publics to NIPD. This study used Q-m…
Illness Online
Self-reported data are regarded by medical researchers as invalid and less reliable than data produced by experts in clinical settings, yet individuals can increasingly contribute personal information to medical research through a variety of online platforms. In this article we examine this 'participatory turn' in healthcare research, which claims to challenge conventional delineations of what is valid and reliable for medical practice, by using …
Autobiologies on YouTube
Despite a growing personal genomics market, little is known about how people engage with the possibilities offered by direct-to-consumer (DTC) genetic testing. In order to help address this gap, this study deploys narrative analysis of YouTube videos posted by individuals who have purchased DTC genetic testing for disease. Genetic testing is said to be contributing to new states of illness, where individuals may become "patients-in-waiting." In t…
Controversy goes online
Scientific controversy is increasingly played out via the internet, a technology that is simultaneously content, medium and research infrastructure. Here we analyse material from Wikipedia, focusing on schizophrenia genetics. We find that citation and curation of scientific resources follow a negotiated, ad hoc adherence to Wikipedia rules, are based on limited access to scientific literature, and thus lead to a partially constructed ‘review’ of …
Sociology (8 obras) · Psychology (7 obras) · Epistemology (5 obras) · Medicine (5 obras) · Political science (5 obras) · Biomedical Ethics and Regulation (4 obras) · Ethics in Clinical Research (4 obras) · Law (4 obras) · Philosophy (4 obras) · Bioethics (3 obras)