Ethical Issues in Newborn Screening

Author(s):  
Jeffrey R. Botkin

Many new parents have little awareness of the battery of screening tests that are routinely conducted on newborns in the United States and the developed world. Newborn screening, one of the most significant achievements in public health over the past 50 years, invites ongoing debate over a number of ethical and legal issues that have been part of the newborn screening landscape since the inception of the programs in the 1960s. This chapter reviews the history of newborn screening, outlines some of the key ethical and legal issues raised by these programs, and offers a prediction about how new technology may change these systems over the next few decades.

2002 ◽  
Vol 12 (12) ◽  
pp. 443-448
Author(s):  
Marilyn Williams

The use of surgical procedures to alter mental states raises many issues. Surgery on the brain has been known for thousands of years, but procedures developed in the 1930s, ‘40s and ‘50s, and the reasons for them, raised many ethical issues that remain with us today. The following article touches on the history of psychosurgery, the conditions treated, the literature on the subject, and the ethical and legal issues.


Author(s):  
Michelle Huckaby Lewis ◽  
Jeffrey R. Botkin

The purpose of newborn screening is to identify and treat infants with certain conditions prior to the onset of symptoms in order to reduce morbidity and mortality. The development of new technology, including genomic sequencing, has expanded the number of conditions that can be detected in the newborn period. Whether infants should be screened for conditions for which there is no available treatment is a subject of debate. The retention and secondary use of de-identified residual newborn screening dried blood samples without explicit parental permission have been controversial. In light of these challenges, some question whether mandatory newborn screening continues to be justified. This chapter will explore key ethical issues faced by state newborn screening programs in the United States.


Daedalus ◽  
2012 ◽  
Vol 141 (1) ◽  
pp. 89-100
Author(s):  
Linda K. Kerber

The old law of domestic relations and the system known as coverture have shaped marriage practices in the United States and have limited women's membership in the constitutional community. This system of law predates the Revolution, but it lingers in U.S. legal tradition even today. After describing coverture and the old law of domestic relations, this essay considers how the received narrative of women's place in U.S. history often obscures the story of women's and men's efforts to overthrow this oppressive regime, and also the story of the continuing efforts of men and some women to stabilize and protect it. The essay also questions the paradoxes built into American law: for example, how do we reconcile the strictures of coverture with the founders' care in defining rights-holders as “persons” rather than “men”? Citing a number of court cases from the early days of the republic to the present, the essay describes the 1960s and 1970s shift in legal interpretation of women's rights and obligations. However, recent developments – in abortion laws, for example – invite inquiry as to how full the change is that we have accomplished. The history of coverture and the way it affects legal, political, and cultural practice today is another American narrative that needs to be better understood.


Author(s):  
Terry L. Birdwhistell ◽  
Deirdre A. Scaggs

Since women first entered the University of Kentucky (UK) in 1880 they have sought, demanded, and struggled for equality within the university. The period between 1880 and 1945 at UK witnessed women’s suffrage, two world wars, and an economic depression. It was during this time that women at UK worked to take their rightful place in the university’s life prior to the modern women’s movement of the 1960s and beyond. The history of women at UK is not about women triumphant, and it remains an untidy story. After pushing for admission into a male-centric campus environment, women created women’s spaces, women’s organizations, and a women’s culture often patterned on those of men. At times, it seemed that a goal was to create a woman’s college within the larger university. However, coeducation meant that women, by necessity, competed with men academically while still navigating the evolving social norms of relationships between the sexes. Both of those paths created opportunities, challenges, and problems for women students and faculty. By taking a more women-centric view of the campus, this study shows more clearly the impact that women had over time on the culture and environment. It also allows a comparison, and perhaps a contrast, of the experiences of UK women with other public universities across the United States.


Author(s):  
I. Glenn Cohen

Gamete donor anonymity has become an increasingly active area of legislative, bioethical, and empirical interest over the last decade or so. This chapter begins by detailing the very different status of gamete donor anonymity, contrasting the United States (where the law does not prohibit it) with the rest of the world (where it has been largely prohibited by law) and examining the effects of these policies. The chapter then examines the major arguments that have been offered in favor of and against mandating nonanonymous gamete donation. In particular, it focuses on the effects of removing anonymity on supply and arguments in favor of ending sperm donor anonymity based on the welfare of donor-conceived children or rights claims by them. The chapter also more briefly considers ethical and legal issues related to donor compensation, accidental incest, information reciprocity between donors and recipients, and reproductive tourism.


2021 ◽  
Vol 9 ◽  
Author(s):  
Audrey C. Woerner ◽  
Renata C. Gallagher ◽  
Jerry Vockley ◽  
Aashish N. Adhikari

Newborn screening (NBS) is a population-based program with a goal of reducing the burden of disease for conditions with significant clinical impact on neonates. Screening tests were originally developed and implemented one at a time, but newer methods have allowed the use of multiplex technologies to expand additions more rapidly to standard panels. Recent improvements in next-generation sequencing are also evolving rapidly from first focusing on individual genes, then panels, and finally all genes as encompassed by whole exome and genome sequencing. The intersection of these two technologies brings the revolutionary possibility of identifying all genetic disorders in newborns, allowing implementation of therapies at the optimum time regardless of symptoms. This article reviews the history of newborn screening and early studies examining the use of whole genome and exome sequencing as a screening tool. Lessons learned from these studies are discussed, along with technical, ethical, and societal challenges to broad implementation.


Author(s):  
Oleh Bulka

The article is devoted to the particularity of Canada-Mexico bilateral relations in the period from their beginning to signing and entry into force the North American Free Trade Agreement (NAFTA). It is noted that from the time of first contacts bilateral relations between two countries have developed unevenly with periods of increase and periods of decline. It is determined that in the history of Canada-Mexico relations before signing NAFTA can be identified four main periods. The first one is a period of early contacts that lasted from the end of XIX century to the establishment of the official diplomatic relations between Canada and Mexico in 1944. In this period of time ties between the two countries were extremely weak. The second period lasted from 1944 to the end of the 1960s. This period clearly shows the limits of cooperation between Canada and Mexico after the establishment of the official diplomatic ties, but it is also possible to see a certain coincidence between the values and diplomatic strategies of these countries. The third period of Canada-Mexico relations lasted from the beginning of the 1970s to the end of the 1980s. During this period, both Canada and Mexico try to diversify their foreign policy and strengthen the organizational mechanism of mutual cooperation. But it is also shown that despite the warm political rhetoric, there was some distance in Canada-Mexico relations. The fourth period of the relations lasted from the late 1980s until the NAFTA treaty came into force in 1994. At that time Canadian and Mexican governments began to give priority to economic relations over political and diplomatic ones. It was revealed that the main influencing factors of bilateral relations between Mexico and Canada were the impact of third countries, especially the United Kingdom and the United States, regional and global economic conditions, and the attitude to the bilateral relations of the political elites of both countries.


2019 ◽  
Vol 11 (2) ◽  
pp. 136-160
Author(s):  
Alexey V. Antoshin ◽  
Dmitry L. Strovsky

The article analyzes the features of Soviet emigration and repatriation in the second half of the 1960s through the early 1970s, when for the first time after a long period of time, and as a result of political agreements between the USSR and the USA, hundreds of thousands of Soviet Jews were able to leave the Soviet Union for good and settle in the United States and Israel. Our attention is focused not only on the history of this issue and the overall political situation of that time, but mainly on the peculiarities of this issue coverage by the leading American printed media. The reference to the media as the main empirical source of this study allows not only perceiving the topic of emigration and repatriation in more detail, but also seeing the regularities of the political ‘face’ of the American press of that time. This study enables us to expand the usual framework of knowledge of emigration against the background of its historical and cultural development in the 20th century.


1999 ◽  
Vol 26 (3) ◽  
pp. 355-382
Author(s):  
Cristina Altman

Summary When mention is made of Brazil in connection with American linguistics, it usually amounts to a reference to the Linguistic Circle of New York, where Roman Jakobson (1896–1982) and Claude Lévi-Strauss (b.1908), who had come from Brazil where he had done ethnological work, met and exchanged ideas. This singular event has cast a shadow on other contacts between Brazil and American linguistics, of which, the one between Jakobson and the Brazilian linguist Joaquim Mattoso Câmara (1904–1970) was much more consequential, at least as far as the implementation of structural linguistics in Brazil and in South America generally during the 1950s and the 1960s is concerned. Mattoso Câmara came to the United States and spent most of his time in New York City (September 1943 till April 1944), where he got exposure to Praguean type structuralism, notably through Jakobson’s lectures he attended at Columbia University and at the École Libre of New York, which had been established by European refugees at the time. He also participated in the first meetings of the Linguistic Circle of New York in 1943 as one of its co-founders. Following his return to Rio de Janeiro, Mattoso Câmara proposed, in 1949, as his doctoral thesis a phonemic description of Brazilian Portuguese. The work was published a few years later, in 1953. His most influential work, Princípios de Lingüística Gerai, first published in 1954, had two more revised and updated editions (1958, 1967) and served to introduce several generations of Brazilian as well as other South American students to structural linguistics during the 1950s and 1960s.


1999 ◽  
Vol 15 (1) ◽  
pp. 58-74 ◽  
Author(s):  
Madeleine MacMurraugh-Kavanagh ◽  
Stephen Lacey

It has long been the received wisdom that television drama has become increasingly ‘filmic’ in orientation, moving away from the ‘theatrical’ as its point of aesthetic reference. This development, which is associated with the rejection of the studio in favour of location shooting – made possible by the increased use of new technology in the 1960s – and with the adoption of cinematic as opposed to theatrical genres, is generally regarded as a sign that the medium has come into its own. By examining a key ‘moment of change’ in the history of television drama, the BBC ‘Wednesday Play’ series of 1964 to 1970, this article asks what was lost in the movement out of the studio and into the streets, and questions the notion that the transition from ‘theatre’ to ‘film’, in the wake of Ken Loach and Tony Garnett's experiments in all-film production, was without tension or contradiction. The discussion explores issues of dramatic space as well as of socio-cultural context, expectation, and audience, and incorporates detailed analyses of Nell Dunn's Up the Junction (1965) and David Mercer's Let's Murder Vivaldi (1968). Madeleine MacMurraugh-Kavanagh is the Post-Doctoral Research Fellow on the HEFCE-funded project, ‘The BBC Wednesday Plays and Post-War British Drama’, now in its third year at the University of Reading. Her publications include Peter Shaffer: Theatre and Drama (Macmillan, 1998), and papers in Screen, The British Journal of Canadian Studies, The Historical Journal of Film, Radio and Television, and Media, Culture, and Society. Stephen Lacey is a lecturer in Film and Drama at the University of Reading, where he is co-director of the ‘BBC Wednesday Plays’ project. His publications include British Realist Theatre: the New Wave and its Contexts (Routledge, 1995) and articles in New Theatre Quarterly and Studies in Theatre Production.


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