Search results

In healthcare, there is limited knowledge of and experience with patient choice management. The purpose of this paper is to focus on patient choice, apply and test demand-supply-based operating (DSO) logic integrated with clinical setting in clarifying choice contexts, investigate patient’s choice-making at different contexts and suggest context-based choice architectures to manage and develop patient choice.

Prenatal screening and testing in the Helsinki and Uusimaa Hospital District (HUS), Finland, was taken as an example. Choice points were contextualized by using the DSO framework. Women’s reflections, behaviors and experience at different choice contexts were studied by interviewing women participating in prenatal screening and testing. Semi-structured interview data were processed by thematic analysis.

By applying DSO logic, four choice contexts (prevention, cure, electives and continuous care) were relevant in the prenatal screening and testing episode. Women had different choice-making in prevention and cure mode contexts regarding choice activeness, information needs, social influence, preferences, emotion status and choice-making difficulty. Default choice was widely accepted by women in prevention mode and individual counseling can help women make informed choice in cure mode.

The authors apply the DSO model to contextualize the patient choice in one care episode and compare patient choice-making at different contexts. The authors also suggest the possible context-based choice architectures to manage and promote patient choice

This paper examines the implications of the disability rights critique of prenatal testing on the development of genetic policy and abortion rights. It traces the reappearance of the disabled body in public deliberations over reproductive and genetic politics that use disability to frame arguments about which bodies are worthy of protection, how and why we limit reproductive choices, and what reasons women may use to terminate their pregnancies. The disability critique of prenatal testing and selective abortion finds itself in productive tension with reproductive rights politics, which increasingly features disability in both pro-life and pro-choice messages. The uneasy alliance between disability and pro-life interests has profound implications for both disability legal scholarship and the sociolegal inquiry into the role of rights articulation – and rejection – by social movements.

This article examines the dialectics of wrongful life and wrongful birth claims in Israel from 1986 until 2012. In May 2012 Israeli Supreme Court declared that while wrongful birth claims were still permitted, wrongful life claims were no longer accepted in a court of law. The article examines the conditions that allowed for and supported the expansion of wrongful life/birth claims until 2012. The article identifies two parallel dynamics of expansion: a broadening of the scope of negligent conduct and a view of milder forms of disabilities as damage that merits compensation. The article further suggests four explanations for such doctrinal evolution, two of which emanate from doctrinal ambiguities and the other two are rooted in social factors that have shaped the meaning of disability as a tragedy and state of inferiority. While recent developments seem promising, the article concludes with a word of caution. Such changes may reproduce past injustices mainly because the compensation mechanism has remained an individual-torts based one, which may run counter to the broader struggle for social change for disabled people.

Purpose – This chapter examines the relationship between prenatal testing, Down syndrome identification, and selective termination practices, and it does so by considering whether the selective termination of fetuses with Down syndrome might constitute genocidal practices.

Methodology/approach – Exploratory and speculative in nature, this chapter brings the phenomenon of prenatal testing and selective termination practices together, and explores whether the increasingly widespread termination of fetuses with Down syndrome fits within definitions of genocide.

Findings – Addressing perceptions of Down syndrome and disability, and integrating aspects of crip politics and definitions of genocide, this chapter concludes that the phenomenon of selective termination involving fetuses with Down syndrome can constitute genocide when particular definitions and interpretations are adopted.

Originality/value – This chapter is perhaps the first academic text to critically evaluate the relationship between prenatal testing, selective termination of fetuses with Down syndrome, and criminological genocide scholarship. Importantly, it does not evaluate individual decision-making practices regarding termination, but instead focuses on collective practices and conditions that work to minimize the number of people with Down syndrome in society.

The premise of this work is that in most societies significant proportions of children do not experience optimum well-being. The goals of this work are: (1) to delineate and illustrate the tangled web of multifactorial causation and heterogeneity of causation for impaired well-being; and (2) to develop the proposition that these very characteristics of causation necessitates particular risk screening strategies which allow for timely interventions. The essence of such screening is to assess target effects which may be consequence of multiple factors, by cost-effective and universally applicable means. This screening paradigm will be examined briefly in relation to selected long standing screening systems, such as “triple test” screening of the fetus, and universal newborn genetic screening. The accumulated experiences with these systems provide some insights on strategic designated planning for risk screening which could be applied in areas of universal newborn screening for prenatal teratogen exposure effects, screening for indicators of systemically imposed disadvantages in the child’s experience, screening the child for inattention to quality of health, and screening for indicators of risk for violent behavior. Such applications of risk screening, if appropriately embedded in universal service structures, e.g. newborn nurseries and schools, can allow for timely interventions for the most vulnerable children.

The progress of genetic medicine has given rise to recent changes in the field of health care, such as expected benefits and potential risks for patients and their relatives. Individual genetic information can unlock many secrets within the genetic family and, sometimes the community to which he or she belongs. Therefore, the traditional duty of confidentiality owed by a health care professional to a patient has been challenged by the more serious discussions based on new genetics. Clinical geneticists providing genetic services must be aware of such complicated situations and whenever possible offer support to the patient (client) and their family members. Excluding eugenics and nonscientific perspectives, the Japanese government renamed and reworked “The Eugenic Protection Act” into the “Maternal Heath Protection Act” in 1996. From 1995 to 2003, the Japanese Society of Human Genetics (JSHG) revised guidelines for genetic testing three times. This process attempted to clarify indications for genetic testing, to focus on protection of individual genetic privacy and to deepen respect for familial relationships and responsibilities. The survey involving 221 JSHG approved clinical geneticist (response rate 54%) revealed that during last 5 years the number trying to do “non-directive” rather than “directive” counseling increased significantly. Although there is still in confusion on certain issues, such as data disclosure to relatives, the global bioethical view of new genetics is gaining Japanese geneticists’ acceptance.

Associations between fetal alcohol syndrome (FAS) and other conditions have been reported, but the links between FAS and autistic spectrum disorders (ASD) remain unclear. This study explored the relationship between FAS and ASD in individuals attending a specialist diagnostic clinic. Consecutive referrals over 24 months to a specialist neurodevelopmental clinic were evaluated using gold standard methods for FAS diagnosis and ASD. The first 18‐month cohort who met criteria for ASD were compared with controls attending the same clinic but who had not experienced prenatal alcohol exposure (nested data). Data for the whole group were also collected. Twenty‐one fetal alcohol spectrum disorder (FASD) individuals were assessed and 16 (72%) met ICD‐10 criteria for childhood autism. Further significant differences between the prenatally exposed and non‐exposed group with ASD were found in the nested study. The research shows an association between heavy prenatal alcohol exposure and ASD. As this is a small sample in a specialist clinic, the study suggests that a larger, more population‐based study of those exposed to heavy prenatal alcohol is warranted.