Mary Briody Mahowald
- Published in print:
- 2006
- Published Online:
- September 2006
- ISBN:
- 9780195176179
- eISBN:
- 9780199786558
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/0195176170.003.0007
- Subject:
- Philosophy, Feminist Philosophy
Cases illustrating variables relevant to the decisions of pregnant women about methods of childbirth, elective cesarean delivery, impaired newborns, and sex assignment at birth are presented. For ...
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Cases illustrating variables relevant to the decisions of pregnant women about methods of childbirth, elective cesarean delivery, impaired newborns, and sex assignment at birth are presented. For each topic, empirical and theoretical factors relevant to the cases are discussed from an “egalitarian perspective” that imputes privileged status to the standpoint of those who are “nondominant”. Implications of different positions about moral status of fetuses and newborns are also considered.Less
Cases illustrating variables relevant to the decisions of pregnant women about methods of childbirth, elective cesarean delivery, impaired newborns, and sex assignment at birth are presented. For each topic, empirical and theoretical factors relevant to the cases are discussed from an “egalitarian perspective” that imputes privileged status to the standpoint of those who are “nondominant”. Implications of different positions about moral status of fetuses and newborns are also considered.
Lainie Friedman Ross
- Published in print:
- 2006
- Published Online:
- May 2006
- ISBN:
- 9780199273287
- eISBN:
- 9780191603655
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/0199273286.003.0011
- Subject:
- Philosophy, Moral Philosophy
This chapter examines the meta-ethical question regarding subject selection in newborn screening for diabetes. Data show that over 90% of parents give permission for diabetes screening of their ...
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This chapter examines the meta-ethical question regarding subject selection in newborn screening for diabetes. Data show that over 90% of parents give permission for diabetes screening of their newborns in the US and abroad. It is argued that prediction research in newborns has potentially serious psychosocial implications, especially when it is introduced into the unsuspecting general population, and research designs must account for them. Recommendations are proposed that balance the need for research access with protection, to minimize harm to infants and their families.Less
This chapter examines the meta-ethical question regarding subject selection in newborn screening for diabetes. Data show that over 90% of parents give permission for diabetes screening of their newborns in the US and abroad. It is argued that prediction research in newborns has potentially serious psychosocial implications, especially when it is introduced into the unsuspecting general population, and research designs must account for them. Recommendations are proposed that balance the need for research access with protection, to minimize harm to infants and their families.
Greg Leigh
- Published in print:
- 2008
- Published Online:
- September 2008
- ISBN:
- 9780195368673
- eISBN:
- 9780199894161
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780195368673.003.0002
- Subject:
- Psychology, Developmental Psychology
This chapter focuses on two developments that will speed up change in the population profile of DHH children: early identification through universal newborn hearing screening (UNHS) and early ...
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This chapter focuses on two developments that will speed up change in the population profile of DHH children: early identification through universal newborn hearing screening (UNHS) and early cochlear implantation. Studies show that children identified through UNHS within the first weeks of life have superior development on a wide range of measures, both linguistic and social-emotional, compared with children whose hearing loss was identified at later ages. The literature also provides compelling evidence of an improved rate and level of spoken language development for most children with severe to profound sensory-neural deafness who receive a cochlear implant, provided that they receive consistent input in spoken language. The chapter argues for an alternative approach to early intervention, which seeks to identify — at the earliest possible stage — those children for whom spoken communication may not be entirely accessible and for whom signed communication will likely be necessary to ensure their linguistic, social, cognitive, and emotional development. It then seeks to provide those children with a program focusing on the development of both spoken and signed language (or communication).Less
This chapter focuses on two developments that will speed up change in the population profile of DHH children: early identification through universal newborn hearing screening (UNHS) and early cochlear implantation. Studies show that children identified through UNHS within the first weeks of life have superior development on a wide range of measures, both linguistic and social-emotional, compared with children whose hearing loss was identified at later ages. The literature also provides compelling evidence of an improved rate and level of spoken language development for most children with severe to profound sensory-neural deafness who receive a cochlear implant, provided that they receive consistent input in spoken language. The chapter argues for an alternative approach to early intervention, which seeks to identify — at the earliest possible stage — those children for whom spoken communication may not be entirely accessible and for whom signed communication will likely be necessary to ensure their linguistic, social, cognitive, and emotional development. It then seeks to provide those children with a program focusing on the development of both spoken and signed language (or communication).
Scott D. Grosse
- Published in print:
- 2009
- Published Online:
- May 2010
- ISBN:
- 9780195398441
- eISBN:
- 9780199776023
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780195398441.003.0026
- Subject:
- Public Health and Epidemiology, Public Health, Epidemiology
This chapter outlines key methodological issues in collecting and analyzing data on outcomes in individuals with genetic disorders that are candidates for inclusion in screening panels, and reviews ...
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This chapter outlines key methodological issues in collecting and analyzing data on outcomes in individuals with genetic disorders that are candidates for inclusion in screening panels, and reviews the relevant literature for two disorders that have relatively abundant evidence. One disorder is medium-chain acyl-CoA dehydrogenase deficiency (MCADD), which is a fatty acid oxidation disorder that is the most common of the new disorders detected by mass-throughput MS/MS technology. MCADD has been the “poster child” for expanded newborn screening. The other disorder is cystic fibrosis (CF), which is also increasingly being added to screening panels.Less
This chapter outlines key methodological issues in collecting and analyzing data on outcomes in individuals with genetic disorders that are candidates for inclusion in screening panels, and reviews the relevant literature for two disorders that have relatively abundant evidence. One disorder is medium-chain acyl-CoA dehydrogenase deficiency (MCADD), which is a fatty acid oxidation disorder that is the most common of the new disorders detected by mass-throughput MS/MS technology. MCADD has been the “poster child” for expanded newborn screening. The other disorder is cystic fibrosis (CF), which is also increasingly being added to screening panels.
Richard S. Olney
- Published in print:
- 2000
- Published Online:
- September 2009
- ISBN:
- 9780195128307
- eISBN:
- 9780199864485
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780195128307.003.0022
- Subject:
- Public Health and Epidemiology, Public Health, Epidemiology
This chapter provides a broad overview of public health aspects of newborn hemoglobinopathy screening in the United States, with special emphasis on epidemiologic efforts to evaluate pediatric ...
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This chapter provides a broad overview of public health aspects of newborn hemoglobinopathy screening in the United States, with special emphasis on epidemiologic efforts to evaluate pediatric outcomes after newborn screening. Despite controversies about cost-effectiveness and ethical quandaries of carrier identification and targeted versus universal approaches, newborn screening programs for hemoglobinopathies in the U.S. are firmly entrenched, at least in part because of strong epidemiological data suggesting that early identification of affected newborns is a rational policy. As prevention-oriented policies are directed toward large populations and manifestations of disease complications change, however, ongoing data collection is needed to ensure the effectiveness of these strategies at the community level.Less
This chapter provides a broad overview of public health aspects of newborn hemoglobinopathy screening in the United States, with special emphasis on epidemiologic efforts to evaluate pediatric outcomes after newborn screening. Despite controversies about cost-effectiveness and ethical quandaries of carrier identification and targeted versus universal approaches, newborn screening programs for hemoglobinopathies in the U.S. are firmly entrenched, at least in part because of strong epidemiological data suggesting that early identification of affected newborns is a rational policy. As prevention-oriented policies are directed toward large populations and manifestations of disease complications change, however, ongoing data collection is needed to ensure the effectiveness of these strategies at the community level.
Guenter Lewy
- Published in print:
- 2010
- Published Online:
- January 2011
- ISBN:
- 9780199746415
- eISBN:
- 9780199866151
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780199746415.003.0006
- Subject:
- Philosophy, General
This chapter presents lessons that can be learned from the four regimes of assisted death examined in this study. The number of individuals who have sought aid in dying has been relatively small and ...
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This chapter presents lessons that can be learned from the four regimes of assisted death examined in this study. The number of individuals who have sought aid in dying has been relatively small and for the most part has been limited to cases of intractable suffering in terminal illness. As knowledge of this remedy spreads, the idea of assisted death becomes more acceptable to both doctors and the public and the number of cases increases. Hence, the number has ranged from 0.19% of all deaths in Oregon to 2.2% in the Netherlands. Contrary to earlier concerns, the enactment of legislation allowing assisted death has everywhere given to a boost to palliative care. Assisted death thus has functioned not as an alternative to the best end-of-life care available, but as a way out for those who suffer inordinately despite all efforts to palliate. The scope of these laws varies. The three European regimes require merely the presence of lasting and unbearable suffering, while Oregon insists that patients be in the terminal phase of their illness. The chapter examines the downside of each approach. It also presents a model statute for the regulation of physician-assisted suicide prepared by specialists in the fields of law and medicine. It concludes that the prolonged experience with assisted death in the four national entities examined makes it possible to develop a regime that will satisfy the need for dignity in dying, assure accountability, and provide adequate safeguards against abuse.Less
This chapter presents lessons that can be learned from the four regimes of assisted death examined in this study. The number of individuals who have sought aid in dying has been relatively small and for the most part has been limited to cases of intractable suffering in terminal illness. As knowledge of this remedy spreads, the idea of assisted death becomes more acceptable to both doctors and the public and the number of cases increases. Hence, the number has ranged from 0.19% of all deaths in Oregon to 2.2% in the Netherlands. Contrary to earlier concerns, the enactment of legislation allowing assisted death has everywhere given to a boost to palliative care. Assisted death thus has functioned not as an alternative to the best end-of-life care available, but as a way out for those who suffer inordinately despite all efforts to palliate. The scope of these laws varies. The three European regimes require merely the presence of lasting and unbearable suffering, while Oregon insists that patients be in the terminal phase of their illness. The chapter examines the downside of each approach. It also presents a model statute for the regulation of physician-assisted suicide prepared by specialists in the fields of law and medicine. It concludes that the prolonged experience with assisted death in the four national entities examined makes it possible to develop a regime that will satisfy the need for dignity in dying, assure accountability, and provide adequate safeguards against abuse.
Arlette Streri
- Published in print:
- 2012
- Published Online:
- September 2012
- ISBN:
- 9780199586059
- eISBN:
- 9780191741470
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780199586059.003.0004
- Subject:
- Psychology, Cognitive Psychology, Developmental Psychology
Newborns are largely naïve when they enter the world. How can they make sense of the wealth of stable or moving objects, events, and people that they encounter through audition, vision, touch and ...
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Newborns are largely naïve when they enter the world. How can they make sense of the wealth of stable or moving objects, events, and people that they encounter through audition, vision, touch and olfaction? This chapter focuses on the various perceptual mechanisms and crossmodal interactions that exist in newborns. Some crossmodal interactions, such as chemosensory interactions, stem from the prenatal life of the newborn; while others, such as auditory-visual and tactile-visual interactions, only emerge at birth. These interactions present different complexities and levels of processing. Crossmodal interactions observed in human newborns involving the chemical senses, audition, and vision are discussed first. Then, the relations between the visual and the tactile modalities in newborns are examined in detail. These relations shed light on an old philosophical question: Molyneux’s famous question (July, 7, 1688) and the origin of crossmodal identity.Less
Newborns are largely naïve when they enter the world. How can they make sense of the wealth of stable or moving objects, events, and people that they encounter through audition, vision, touch and olfaction? This chapter focuses on the various perceptual mechanisms and crossmodal interactions that exist in newborns. Some crossmodal interactions, such as chemosensory interactions, stem from the prenatal life of the newborn; while others, such as auditory-visual and tactile-visual interactions, only emerge at birth. These interactions present different complexities and levels of processing. Crossmodal interactions observed in human newborns involving the chemical senses, audition, and vision are discussed first. Then, the relations between the visual and the tactile modalities in newborns are examined in detail. These relations shed light on an old philosophical question: Molyneux’s famous question (July, 7, 1688) and the origin of crossmodal identity.
Daphne Maurer, Laura C. Gibson, and Ferrinne Spector
- Published in print:
- 2012
- Published Online:
- September 2012
- ISBN:
- 9780199586059
- eISBN:
- 9780191741470
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780199586059.003.0010
- Subject:
- Psychology, Cognitive Psychology, Developmental Psychology
Synaesthesia is a neurological phenomenon that often involves crossmodal or cross-dimensional perceptions which are not related to environmental stimuli. Stimulation of one sense, such as hearing, ...
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Synaesthesia is a neurological phenomenon that often involves crossmodal or cross-dimensional perceptions which are not related to environmental stimuli. Stimulation of one sense, such as hearing, triggers the normal perception of a specific sound, but also an additional perception, often in another sense, such as a specific colour. This chapter summarizes the evidence suggesting that synaesthesia is a remnant of a normal developmental process involving an initial proliferation of synaptic connections, including connections linking cortical areas that will later become specialized for unisensory processing. An argument is put forward that crossmodal and cross-dimensional associations commonly manifested in synaesthetic adults provide clues about cortical connections in early childhood that may influence perception in the typical non-synaesthetic child. Behavioural evidence from children is provided to support this point of view. This chapter also argues that remnants of the original connections are present even in non-synaesthetic adults, in whom their influence is manifested not in conscious perception, but in implicit crossmodal associations in perception.Less
Synaesthesia is a neurological phenomenon that often involves crossmodal or cross-dimensional perceptions which are not related to environmental stimuli. Stimulation of one sense, such as hearing, triggers the normal perception of a specific sound, but also an additional perception, often in another sense, such as a specific colour. This chapter summarizes the evidence suggesting that synaesthesia is a remnant of a normal developmental process involving an initial proliferation of synaptic connections, including connections linking cortical areas that will later become specialized for unisensory processing. An argument is put forward that crossmodal and cross-dimensional associations commonly manifested in synaesthetic adults provide clues about cortical connections in early childhood that may influence perception in the typical non-synaesthetic child. Behavioural evidence from children is provided to support this point of view. This chapter also argues that remnants of the original connections are present even in non-synaesthetic adults, in whom their influence is manifested not in conscious perception, but in implicit crossmodal associations in perception.
David Cressy
- Published in print:
- 1997
- Published Online:
- October 2011
- ISBN:
- 9780198201687
- eISBN:
- 9780191674983
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780198201687.003.0005
- Subject:
- History, British and Irish Early Modern History, Social History
This chapter examines the experience of the mother and her child immediately following birth in Tudor and Stuart England. The midwife was responsible for checking the health condition of the newborn ...
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This chapter examines the experience of the mother and her child immediately following birth in Tudor and Stuart England. The midwife was responsible for checking the health condition of the newborn infant and in cutting the umbilical cord. The child's navel, especially those of the first born, was traditionally inspected by childbed assistants to predict the mother's future childbearing. The babies were often wrapped tightly in linen bands before being laid in a cradle. The responsibility of providing refreshment and ointment to the new mother was taken by those other childbed assistants including a nurse, relatives, or neighbours.Less
This chapter examines the experience of the mother and her child immediately following birth in Tudor and Stuart England. The midwife was responsible for checking the health condition of the newborn infant and in cutting the umbilical cord. The child's navel, especially those of the first born, was traditionally inspected by childbed assistants to predict the mother's future childbearing. The babies were often wrapped tightly in linen bands before being laid in a cradle. The responsibility of providing refreshment and ointment to the new mother was taken by those other childbed assistants including a nurse, relatives, or neighbours.
C. Y. Cyrus Chu and Ruoh‐Rong Yu
- Published in print:
- 2009
- Published Online:
- February 2010
- ISBN:
- 9780199578092
- eISBN:
- 9780191722424
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780199578092.003.0004
- Subject:
- Economics and Finance, South and East Asia
This chapter studies various aspects of family fertility in Taiwan and China, including the age of marriage, the duration from marriage to the first birth, mandatory vs. voluntary family planning, ...
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This chapter studies various aspects of family fertility in Taiwan and China, including the age of marriage, the duration from marriage to the first birth, mandatory vs. voluntary family planning, the contraceptive practices, the preferences for sons, the newborn sex ratio, and the quantity‐quality tradeoffs. With respect to basic statistics, various measures against the degree of urbanization and the educational level of wives are cross‐tabulated. Concerning quantity‐quality tradeoffs, the instrumental variable method was applied and it was found that there does not exist a negative relationship between sibship size and educational attainment, for both Taiwan and China. Finally, the analysis on birth duration shows that co‐residing with the husband's parents shortens the first two birth durations in Taiwan.Less
This chapter studies various aspects of family fertility in Taiwan and China, including the age of marriage, the duration from marriage to the first birth, mandatory vs. voluntary family planning, the contraceptive practices, the preferences for sons, the newborn sex ratio, and the quantity‐quality tradeoffs. With respect to basic statistics, various measures against the degree of urbanization and the educational level of wives are cross‐tabulated. Concerning quantity‐quality tradeoffs, the instrumental variable method was applied and it was found that there does not exist a negative relationship between sibship size and educational attainment, for both Taiwan and China. Finally, the analysis on birth duration shows that co‐residing with the husband's parents shortens the first two birth durations in Taiwan.
Scott D. Grosse
- Published in print:
- 2009
- Published Online:
- February 2010
- ISBN:
- 9780199547494
- eISBN:
- 9780191720055
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780199547494.003.06
- Subject:
- Public Health and Epidemiology, Public Health, Epidemiology
Screening for metabolic, endocrine, and other diseases in newborns is performed through the laboratory analysis of dried blood spot specimens. This chapter reviews economic evaluations of newborn ...
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Screening for metabolic, endocrine, and other diseases in newborns is performed through the laboratory analysis of dried blood spot specimens. This chapter reviews economic evaluations of newborn dried blood spot screening strategies published during 2002-07, focusing on the cost-effectiveness of screening for cystic fibrosis, congenital adrenal hyperplasia, and medium chain acyl-CoA dehydrogenase deficiency (MCADD). The use of tandem mass spectrometry (MS/MS) to detect MCADD is presented in detail, through examinations of the costs of screening and medical management, and of outcomes, including quality-adjusted life year (QALY) measurement, disability, and mortality. Ways to generate higher quality evidence are presented. The chapter concludes with a discussion of the use of economic evaluations to inform newborn screening policies.Less
Screening for metabolic, endocrine, and other diseases in newborns is performed through the laboratory analysis of dried blood spot specimens. This chapter reviews economic evaluations of newborn dried blood spot screening strategies published during 2002-07, focusing on the cost-effectiveness of screening for cystic fibrosis, congenital adrenal hyperplasia, and medium chain acyl-CoA dehydrogenase deficiency (MCADD). The use of tandem mass spectrometry (MS/MS) to detect MCADD is presented in detail, through examinations of the costs of screening and medical management, and of outcomes, including quality-adjusted life year (QALY) measurement, disability, and mortality. Ways to generate higher quality evidence are presented. The chapter concludes with a discussion of the use of economic evaluations to inform newborn screening policies.
Laury Oaks
- Published in print:
- 2015
- Published Online:
- March 2016
- ISBN:
- 9781479897926
- eISBN:
- 9781479883073
- Item type:
- book
- Publisher:
- NYU Press
- DOI:
- 10.18574/nyu/9781479897926.001.0001
- Subject:
- Anthropology, American and Canadian Cultural Anthropology
“Baby safe haven” laws, which allow a parent to relinquish a newborn baby legally and anonymously at a specified institutional location—such as a hospital or fire station—were established in every ...
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“Baby safe haven” laws, which allow a parent to relinquish a newborn baby legally and anonymously at a specified institutional location—such as a hospital or fire station—were established in every state between 1999 and 2009. Promoted during a time of heated public debate over policies on abortion, sex education, teen pregnancy, adoption, welfare, immigrant reproduction, and child abuse, safe haven laws were passed by the majority of states with little contest. These laws were thought to offer a solution to the consequences of unwanted pregnancy: mothers would no longer be burdened with children they could not care for, and newborn babies would no longer be abandoned in dumpsters. Yet while these laws are well meaning, they ignore the real problem: some women lack key social and economic supports that mothers need to raise children. Safe haven laws do little to help disadvantaged women. Instead, advocates of safe haven laws target teenagers, women of color, and poor women with safe haven information and see relinquishing custody of their newborns as an act of maternal love. Disadvantaged women are preemptively judged as “bad” mothers whose babies would be better off without them. This book argues that the labeling of certain kinds of women as potential “bad” mothers who should consider anonymously giving up their newborns for adoption into a “loving” home should best be understood as an issue of reproductive justice.Less
“Baby safe haven” laws, which allow a parent to relinquish a newborn baby legally and anonymously at a specified institutional location—such as a hospital or fire station—were established in every state between 1999 and 2009. Promoted during a time of heated public debate over policies on abortion, sex education, teen pregnancy, adoption, welfare, immigrant reproduction, and child abuse, safe haven laws were passed by the majority of states with little contest. These laws were thought to offer a solution to the consequences of unwanted pregnancy: mothers would no longer be burdened with children they could not care for, and newborn babies would no longer be abandoned in dumpsters. Yet while these laws are well meaning, they ignore the real problem: some women lack key social and economic supports that mothers need to raise children. Safe haven laws do little to help disadvantaged women. Instead, advocates of safe haven laws target teenagers, women of color, and poor women with safe haven information and see relinquishing custody of their newborns as an act of maternal love. Disadvantaged women are preemptively judged as “bad” mothers whose babies would be better off without them. This book argues that the labeling of certain kinds of women as potential “bad” mothers who should consider anonymously giving up their newborns for adoption into a “loving” home should best be understood as an issue of reproductive justice.
Dominic Wilkinson
- Published in print:
- 2013
- Published Online:
- May 2013
- ISBN:
- 9780199669431
- eISBN:
- 9780191748783
- Item type:
- book
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780199669431.001.0001
- Subject:
- Philosophy, Moral Philosophy, Philosophy of Science
New forms of neuroimaging are increasingly used to predict the outcome for seriously ill newborn infants and children; these predictions play a major role in decisions to continue or withdraw life ...
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New forms of neuroimaging are increasingly used to predict the outcome for seriously ill newborn infants and children; these predictions play a major role in decisions to continue or withdraw life support in intensive care. What patterns of brain injury, and what severity of future impairment are sufficient to allow an infant or child to die? This book uses the fictitious ‘Carmentis Machine’ to help analyse the relevance of different factors for decision-making in the presence of prognostic certainty, including the best interests of the child and parents, replacement, and moral status. It is argued that it is impossible to define the point where life becomes ‘intolerable’ for the child, or where benefits are outweighed by burdens. Also, the interests of the family may sometimes outweigh the interests of the child. The book then addresses the problem of uncertainty, identifying sources of uncertainty and their influence on the interests of the child. There is significant overlap between the interests of the child and the family. Where there is prognostic uncertainty, we should give some weight to the chance that an infant or child will survive in a state that is negative or harmful. There is also moral uncertainty about some of the key elements of decisions, for example about how to weigh interests, about when life is worth living, and about the best course of action in the face of uncertainty about a child’s outcome. The final chapter develops a framework for the boundaries of parental discretion in decision-making.Less
New forms of neuroimaging are increasingly used to predict the outcome for seriously ill newborn infants and children; these predictions play a major role in decisions to continue or withdraw life support in intensive care. What patterns of brain injury, and what severity of future impairment are sufficient to allow an infant or child to die? This book uses the fictitious ‘Carmentis Machine’ to help analyse the relevance of different factors for decision-making in the presence of prognostic certainty, including the best interests of the child and parents, replacement, and moral status. It is argued that it is impossible to define the point where life becomes ‘intolerable’ for the child, or where benefits are outweighed by burdens. Also, the interests of the family may sometimes outweigh the interests of the child. The book then addresses the problem of uncertainty, identifying sources of uncertainty and their influence on the interests of the child. There is significant overlap between the interests of the child and the family. Where there is prognostic uncertainty, we should give some weight to the chance that an infant or child will survive in a state that is negative or harmful. There is also moral uncertainty about some of the key elements of decisions, for example about how to weigh interests, about when life is worth living, and about the best course of action in the face of uncertainty about a child’s outcome. The final chapter develops a framework for the boundaries of parental discretion in decision-making.
Deirdre Madden
- Published in print:
- 2016
- Published Online:
- May 2016
- ISBN:
- 9780719099465
- eISBN:
- 9781526104410
- Item type:
- chapter
- Publisher:
- Manchester University Press
- DOI:
- 10.7228/manchester/9780719099465.003.0010
- Subject:
- Sociology, Culture
The chapter considers the ownership of newborn screening cards (also known as Guthrie cards) and the blood spots retained on them, the role of consent to the use of these cards and relevant data ...
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The chapter considers the ownership of newborn screening cards (also known as Guthrie cards) and the blood spots retained on them, the role of consent to the use of these cards and relevant data protection provisions which have resulted in challenges to their retention. The issues raised here also have relevance for biobanks and other existing archives of retained biological samples in hospitals and research facilities as similar questions arise in relation to those collections. The chapter recommends that legislation be introduced to exempt the newborn screening card collection from data protection legislation and to put in place a clear and robust governance framework to ensure that individual rights are protected to the greatest extent possible. These recommendations are also relevant to other collections of biological samples in which a strong argument exists for their retention for diagnostic purposes as well as for public healthLess
The chapter considers the ownership of newborn screening cards (also known as Guthrie cards) and the blood spots retained on them, the role of consent to the use of these cards and relevant data protection provisions which have resulted in challenges to their retention. The issues raised here also have relevance for biobanks and other existing archives of retained biological samples in hospitals and research facilities as similar questions arise in relation to those collections. The chapter recommends that legislation be introduced to exempt the newborn screening card collection from data protection legislation and to put in place a clear and robust governance framework to ensure that individual rights are protected to the greatest extent possible. These recommendations are also relevant to other collections of biological samples in which a strong argument exists for their retention for diagnostic purposes as well as for public health
Helen Shoemark
- Published in print:
- 2011
- Published Online:
- September 2011
- ISBN:
- 9780199580514
- eISBN:
- 9780191728730
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780199580514.003.0012
- Subject:
- Psychology, Music Psychology, Developmental Psychology
This chapter explores the possibilities for the music therapist employing infant-directed singing both with the infant's family, and also directly with the infant. First, the experience of the ...
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This chapter explores the possibilities for the music therapist employing infant-directed singing both with the infant's family, and also directly with the infant. First, the experience of the healthy infant in the context of the infant's family is presented, and then an exploration of the hospital experience for a newborn infant and family creates a picture about the potential and value of music therapy in this context. Finally, the chapter focuses on how and why infant-directed singing provides a simple yet potent experience for the developing infant.Less
This chapter explores the possibilities for the music therapist employing infant-directed singing both with the infant's family, and also directly with the infant. First, the experience of the healthy infant in the context of the infant's family is presented, and then an exploration of the hospital experience for a newborn infant and family creates a picture about the potential and value of music therapy in this context. Finally, the chapter focuses on how and why infant-directed singing provides a simple yet potent experience for the developing infant.
Muin J. Khoury, Wylie Burke, and Elizabeth Thomson (eds)
- Published in print:
- 2000
- Published Online:
- September 2009
- ISBN:
- 9780195128307
- eISBN:
- 9780199864485
- Item type:
- book
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780195128307.001.0001
- Subject:
- Public Health and Epidemiology, Public Health, Epidemiology
With the accelerating discovery of human genes, public health professionals are increasingly confronted with a large body of scientific information that will guide public health action. Because the ...
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With the accelerating discovery of human genes, public health professionals are increasingly confronted with a large body of scientific information that will guide public health action. Because the broad mission of public health is to fulfill society's interest in assuring conditions in which people can be healthy, the integration of new genetic information in public health research, policy, and program development is unavoidable. Public health leadership is urgently needed to aid in the use of genetic information to improve health and prevent disease, and to address ethical, legal, and social issues resulting from inappropriate use of such information. In the not too-distant future, disease prevention and health promotion programs will routinely consider whether or not to use genetic information to help target behavioral, medical, or environmental intervention activities in order to maximize benefit and minimize costs and harm to individuals. In anticipation of the expected growth at the interface of genetics and public health, this book delineates a framework for the integration of advances in human genetics into public health practice. The book reviews public health genetics, and includes chapters on important general issues such as newborn and other genetic screening, the delivery of genetic services, and the ethical, legal, and social implications of the use of genetics within public health. It also reviews relevant clinical topics, the historical background, cross-cultural aspects, and communication issues. Contributors come from a wide range of fields including epidemiology, biostatistics, health policy and management, health services research, behavioral and social sciences, ethics, law, health economics, and laboratory sciences.Less
With the accelerating discovery of human genes, public health professionals are increasingly confronted with a large body of scientific information that will guide public health action. Because the broad mission of public health is to fulfill society's interest in assuring conditions in which people can be healthy, the integration of new genetic information in public health research, policy, and program development is unavoidable. Public health leadership is urgently needed to aid in the use of genetic information to improve health and prevent disease, and to address ethical, legal, and social issues resulting from inappropriate use of such information. In the not too-distant future, disease prevention and health promotion programs will routinely consider whether or not to use genetic information to help target behavioral, medical, or environmental intervention activities in order to maximize benefit and minimize costs and harm to individuals. In anticipation of the expected growth at the interface of genetics and public health, this book delineates a framework for the integration of advances in human genetics into public health practice. The book reviews public health genetics, and includes chapters on important general issues such as newborn and other genetic screening, the delivery of genetic services, and the ethical, legal, and social implications of the use of genetics within public health. It also reviews relevant clinical topics, the historical background, cross-cultural aspects, and communication issues. Contributors come from a wide range of fields including epidemiology, biostatistics, health policy and management, health services research, behavioral and social sciences, ethics, law, health economics, and laboratory sciences.
Dominic Wilkinson and Charles Foster
- Published in print:
- 2011
- Published Online:
- May 2011
- ISBN:
- 9780199599844
- eISBN:
- 9780191725227
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780199599844.003.0016
- Subject:
- Law, Medical Law
Currently the main forms of imaging used in newborns are ultrasound, computed tomography (CT), and magnetic resonance imaging (MRI). These modalities provide imperfect guides to the severity and ...
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Currently the main forms of imaging used in newborns are ultrasound, computed tomography (CT), and magnetic resonance imaging (MRI). These modalities provide imperfect guides to the severity and extent of brain damage, and there is often significant uncertainty about prognosis. The courts have placed some emphasis on imaging results in a couple of recent cases. But as neuroimaging techniques improve, predictions may become significantly more accurate. This chapter considers how such developments would influence legal judgments about the permissibility of withdrawing or withholding life support from newborn infants. Part 1 considers a hypothetical form of neuroimaging — called this the ‘Carmentis Machine’ — able to predict accurately future impairments in newborn infants. Part 2 provides an analysis of two different approaches used in guidelines and by the courts to determine the best interests of infants. Part 3 considers a further question raised by developments in neuroimaging and prognosis: what implications would the development of this machine have for the law and for practice?Less
Currently the main forms of imaging used in newborns are ultrasound, computed tomography (CT), and magnetic resonance imaging (MRI). These modalities provide imperfect guides to the severity and extent of brain damage, and there is often significant uncertainty about prognosis. The courts have placed some emphasis on imaging results in a couple of recent cases. But as neuroimaging techniques improve, predictions may become significantly more accurate. This chapter considers how such developments would influence legal judgments about the permissibility of withdrawing or withholding life support from newborn infants. Part 1 considers a hypothetical form of neuroimaging — called this the ‘Carmentis Machine’ — able to predict accurately future impairments in newborn infants. Part 2 provides an analysis of two different approaches used in guidelines and by the courts to determine the best interests of infants. Part 3 considers a further question raised by developments in neuroimaging and prognosis: what implications would the development of this machine have for the law and for practice?
Angela E. Raffle and J. A. Muir Gray
- Published in print:
- 2007
- Published Online:
- September 2009
- ISBN:
- 9780199214495
- eISBN:
- 9780191723742
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780199214495.003.0005
- Subject:
- Public Health and Epidemiology, Public Health, Epidemiology
This chapter gives an understanding of the essential tasks involved in setting up a good quality screening programme. Newborn hearing screening is used as a case study. There is an old saying that ...
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This chapter gives an understanding of the essential tasks involved in setting up a good quality screening programme. Newborn hearing screening is used as a case study. There is an old saying that all you have to do to create an effective service is choose the right things to do, then do them right. Choosing the right screening involves assessing the evidence and making policy. Doing screening right means setting up a well ordered programme when screening is worthwhile, ensuring that the service is always of high quality, dealing effectively with problems, and making sure that when harm is more likely than benefit then screening does not happen. The chapter focuses on matters that are essential if screening is to achieve public health improvement — irrespective of where, and in what type of health system, it is being delivered.Less
This chapter gives an understanding of the essential tasks involved in setting up a good quality screening programme. Newborn hearing screening is used as a case study. There is an old saying that all you have to do to create an effective service is choose the right things to do, then do them right. Choosing the right screening involves assessing the evidence and making policy. Doing screening right means setting up a well ordered programme when screening is worthwhile, ensuring that the service is always of high quality, dealing effectively with problems, and making sure that when harm is more likely than benefit then screening does not happen. The chapter focuses on matters that are essential if screening is to achieve public health improvement — irrespective of where, and in what type of health system, it is being delivered.
W. Harry Hannon, L. Omar Henderson, and Carol J. Bell
- Published in print:
- 2000
- Published Online:
- September 2009
- ISBN:
- 9780195128307
- eISBN:
- 9780199864485
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780195128307.003.0013
- Subject:
- Public Health and Epidemiology, Public Health, Epidemiology
This chapter discusses quality assurance (QA) for newborn screening programs. It describes the Newborn Screening Quality Assurance Program (NSQAP) at the CDC in Atlanta, Georgia, which provides ...
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This chapter discusses quality assurance (QA) for newborn screening programs. It describes the Newborn Screening Quality Assurance Program (NSQAP) at the CDC in Atlanta, Georgia, which provides services for laboratories that use specimens of dried-blood spots (DBSs) to perform newborn screening tests. The mission of this program is to improve interlaboratory comparability and to work toward interlaboratory standardization.Less
This chapter discusses quality assurance (QA) for newborn screening programs. It describes the Newborn Screening Quality Assurance Program (NSQAP) at the CDC in Atlanta, Georgia, which provides services for laboratories that use specimens of dried-blood spots (DBSs) to perform newborn screening tests. The mission of this program is to improve interlaboratory comparability and to work toward interlaboratory standardization.
Kenneth A. Pass
- Published in print:
- 2000
- Published Online:
- September 2009
- ISBN:
- 9780195128307
- eISBN:
- 9780199864485
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780195128307.003.0020
- Subject:
- Public Health and Epidemiology, Public Health, Epidemiology
This chapter discusses the lessons learned from newborn screening for phenylketonuria (PKU) in the U.S. Newborn screening is, conceptually, a simple public health program with well-defined goals. The ...
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This chapter discusses the lessons learned from newborn screening for phenylketonuria (PKU) in the U.S. Newborn screening is, conceptually, a simple public health program with well-defined goals. The implementation of a successful program requires many components outside the testing laboratory, extensive expertise in areas ranging from phlebotomy to genetic counseling, attention to innumerable details, and, above all, dedication by all staff involved. In terms of public health impact, newborn screening touches more lives daily than perhaps any other public health program, and its influence now extends far beyond the perinatal period.Less
This chapter discusses the lessons learned from newborn screening for phenylketonuria (PKU) in the U.S. Newborn screening is, conceptually, a simple public health program with well-defined goals. The implementation of a successful program requires many components outside the testing laboratory, extensive expertise in areas ranging from phlebotomy to genetic counseling, attention to innumerable details, and, above all, dedication by all staff involved. In terms of public health impact, newborn screening touches more lives daily than perhaps any other public health program, and its influence now extends far beyond the perinatal period.
