Since its introduction in 2011, noninvasive prenatal testing (NIPT) has spread rapidly around the world. It carries numerous benefits but also raises challenges, often related to sociocultural, legal, and economic contexts. This article describes the implementation of NIPT in nine countries, each with its own unique characteristics: Australia, Canada, China and Hong Kong, India, Israel, Lebanon, the Netherlands, the United Kingdom, and the United States. Themes covered for each country include the structure of the healthcare system, how NIPT is offered, counseling needs and resources, and cultural and legal context regarding disability and pregnancy termination. Some common issues emerge, including cost as a barrier to equitable access, the complexity of decision-making about public funding, and a shortage of appropriate resources that promote informed choice. Conversely, sociocultural values that underlie the use of NIPT vary greatly among countries. The issues described will become even more challenging as NIPT evolves from a second-tier to a first-tier screening test with expanded use. Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 22 is August 2021. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

This mixed-methods study aimed to explore the experiences of screening, assessment, diagnosis, and intervention for autism spectrum disorder (ASD) among 249 parents of children with ASD in Hong Kong. Participants completed a survey and responded to open-ended questions regarding their experiences and views of ASD service provision. The quantitative analysis focused on (a) assessing parents' experiences of key milestones, including the time to access, professional support and consultation, referral and follow-up, and (b) examining the correlates of the milestone experiences. Qualitative themes focused on the contexts of parents' difficulties and views of ASD service provision. A joint display presented the integration of converging the quantitative and qualitative data. There were significant delays from screening and diagnosis to intervention due to limited resources for ASD. Although the government surveillance system facilitated access to screening, a delay in the entry to intervention remained. Parents' narratives of frustration and confusion with ASD services reflected a lack of a coherent system for diagnosis and family needs assessment. Quality service provision for ASD requires integrated efforts of early identification, referral, and psychoeducational family support. Unbalanced resources between screening and intervention in public pediatric care settings should be addressed to meet the unmet needs of children with ASD. Public Policy Relevance StatementIt is essential to establish well-coordinated service provision for screening, diagnosis, and special education needs programs for children with autism spectrum disorder (ASD) to facilitate early intervention. Little is known about how parents experience ASD health care services regarding availability, accessibility, and adequacy in the context of limited resources for ASD. This mixed-methods study documented significant delays in the pathway to diagnosis and intervention, and the findings highlight the policy impact of incoherent systems on the well-being of families of children with ASD.

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The concept of informed choice for antenatal screening consists of Western ideologies, encapsulating individualistic approaches, and may be valued differently by people from countries with more collectivist cultures. This study aimed to explore perceptions of informed choice in antenatal screening in women from China, Hong Kong and Pakistan. A Q-methodology study was conducted during June 2016 to February 2017, in China (Shanghai and Duyun), Hong Kong and Pakistan (Lahore). A total of 299 women rank ordered 41 statements. Following by-person factor analysis, five distinct viewpoints were identified: choice as a maternal responsibility entrusted to doctors; choice as a shared decision led by the mother; choice as a shared decision led by the partner; choice as a responsibility delegated to the partner and doctors; and choice within a religious discourse. The findings highlight ethical dilemmas for healthcare professionals in facilitating informed choice for antenatal screening where policy and practice guidelines adapt predominantly individualistic approaches. Women's preferences for decision-making with health professionals and/or their partner, with minimal emphasis on individual rights, suggest the need for clarification of the role of health professionals in supporting and facilitating decision-making to enhance women's autonomy. Policy and practice guidelines need to be (re)framed to facilitate decision-making processes for antenatal screening using relational approaches to autonomy.

Bioethics Education in the Anglo-European context developed since 1970 and was incorporated into the undergraduate and postgraduate education, residency training, and continuous education. In the Asia-Pacific region, bioethics education is less structured and often dependent on contextual constraints. This paper provides a cross-sectional analysis, describing institutional experiences in developing bioethics curriculum at two medical schools in Malaysia and Hong Kong. The medical programmes of the two institutions are distinctive in terms curriculum framework, teaching approach, and topic selection, and common challenges include implementation of bioethics courses, students’ resistance to bioethics, and limited teaching capacity, emerged as they evolve. The reported experiences revealed that there is room for improvement regarding how medical schools integrate bioethics education in regions where curriculum development remains at an early stage. At least, a bioethics education requires both top-down support from the faculty to improve teaching and educational quality, as well as from the bottom-up approach to empower students to raise awareness and concerns toward bioethics, and helps students developing reasoning through challenging issues.

BackgroundWhile non-invasive prenatal testing (NIPT) for fetal aneuploidy is commercially available in many countries, little is known about how obstetric professionals in non-Western populations perceive the clinical usefulness of NIPT in comparison with existing first-trimester combined screening (FTS) for Down syndrome (DS) or invasive prenatal diagnosis (IPD), or perceptions of their ethical concerns arising from the use of NIPT.MethodsA cross-sectional survey among 327 obstetric professionals (237 midwives, 90 obstetricians) in Hong Kong.ResultsCompared to FTS, NIPT was believed to: provide more psychological benefits and enable earlier consideration of termination of pregnancy. Compared to IPD, NIPT was believed to: provide less psychological stress for high-risk women and more psychological assurance for low-risk women, and offer an advantage to detect chromosomal abnormalities earlier. Significant differences in perceived clinical usefulness were found by profession and healthcare sector: (1) obstetricians reported more certain views towards the usefulness of NIPT than midwives and (2) professionals in the public sector perceived less usefulness of NIPT than the private sector. Beliefs about earlier detection of DS using NIPT were associated with ethical concerns about increasing abortion. Participants believing that NIPT provided psychological assurance among low-risk women were less likely to be concerned about ethical issues relating to informed decision-making and pre-test consultation for NIPT.ConclusionsOur findings suggest the need for political debate initially on how to ensure pregnant women accessing public services are informed about commercially available more advanced technology, but also on the potential implementation of NIPT within public services to improve access and equity to DS screening services.

Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient‐centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision‐making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end‐of‐life care.

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