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Background: Although an integral part of ethical and quality health care, little is known about the informed decision making of Chinese women with different socioeconomic backgrounds within the context of antenatal testing., Methods: To explore women's viewpoints on informed decision making regarding antenatal screening, a Q-methodology study that combines both quantitative factor analysis and interviews was conducted between June 2016 and February 2017 in Shanghai and Duyun. A total of 169 women (84 Shanghai and 85 Duyun) participated in the study of 41 ranked statements along a Q-sorting grid., Results: Using by-person factor analysis, five distinct viewpoints are identified: (a) choice is shared with the partner/husband, but the mother has the right to make the final decision; (b) having antenatal tests is not about choice but about a mother's responsibility; (c) choice is a shared decision led primarily by the partner/husband and secondarily by the doctors; (d) choice should be made using the advice of doctors, but the decision should be made with the partner/husband; and (e) choice is a responsibility shared with the partner, family and doctors., Conclusions: The study reveals that women with better education and higher incomes demonstrate more autonomy than those with less education. The nuclear family clearly emerges as the main decision makers in health-care services in China., Patient and Public Contribution: The 169 participants shared their views and stories for at least an hour. They were debriefed after the interviews and contributed their thoughts on our study design and interpretation of the data., (© 2020 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Objective: To examine attitudes toward prenatal testing and termination of pregnancy (TOP) among parents and obstetric providers in relation to their views on raising a child with disability., Methods: An explanatory sequential mixed methods study. A survey among 274 parents and 141 providers was followed by interviews with 26 parents and 10 providers. Using multivariate analysis, the relationships between attitudes were examined. Thematic analysis was used to identify the reasons behind the attitudes., Results: In comparison with providers, parents reported more positive attitudes toward raising a child with disability and more moral views about TOP. Providers reported more variations in attitudes toward offering prenatal testing and TOP. Significant associations were found between attitudes toward prenatal testing, raising a child with disability, reproductive autonomy, and TOP. Three major themes were identified: (1) meanings of parenthood from genetic tests; (2) views toward TOP and parental responsibility; and (3) implications of advanced extended prenatal genetic testing., Conclusions: Perceived social-cultural norms of disabilities and parental expectations of raising a child with disability influence decision-making regarding TOP., Practice Implications: As more conditions of the fetus are able to be detected, the social-cultural implications of the technology and disabilities need to be addressed in antenatal care., Competing Interests: Declaration of Competing Interest The authors declare that they have no conflict of interest., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Prenatal genetic technologies now are being implemented in LMICs, and while there is much research on the ethical, legal and social implications of such technologies in Western countries, there is a paucity of such research in LMICs, which have diverse cultural, religious, political, financial and health service contexts. This study aimed to explore views about women's autonomous decision-making for antenatal screening held by women, men and healthcare professionals (HCPs) in Pakistan. A Q-methodology study was conducted during June 2016 to January 2018 in Lahore, Pakistan. A total of 137 participants (60 women, 57 men, 20 HCPs) rank-ordered 41 statements. Following by-person factor analysis, four distinct viewpoints were identified. Three of these represent views held by women and men only: autonomous decision-making requires directive advice from doctors; autonomous decision-making requires the husband's involvement, where independent decision-making by the woman is considered culturally inappropriate; and opting for antenatal screening is a foregone decision. One contrasting viewpoint represents predominantly HCPs: autonomous decision-making is the couple's responsibility. These findings highlight that Western approaches to facilitating women's autonomy for antenatal screening are unlikely to be suitable for use in Pakistan. Instead, culturally appropriate practice guidelines are needed in LMICs to enable HCPs to adopt shared decision-making approaches in a way that enables them to facilitate active and joint decision-making by couples, while ensuring women exercise their autonomy.

Background: Cell-free fetal DNA sequencing based non-invasive prenatal testing (NIPT) for Down syndrome (DS) has become widely available. In Hong Kong, obstetric providers in the public sector refer women identified at high risk of having a child with Down syndrome to obstetric providers in the private sector for NIPT. Little is known about how the NIPT has been adopted in the public sector where DS screening is provided for free of charge. The study aimed to identify the factors influencing providers' role enactment, such as consultation and referral, in the service provision of NIPT for DS in public and private healthcare sectors., Methods: In-depth interviews were conducted with 20 obstetric providers offering NIPT in Hong Kong. Thematic narrative analysis was used to identify (i) the factors considered by participants when referring women for NIPT for Down syndrome in public and private healthcare sectors and (ii) their perceptions of the need to integrate NIPT into the current public antenatal service., Results: Participants raised concerns about the lack of transparent referral guideline between public and private sectors for NIPT. Public obstetric providers reported little obligation to provide women with much information about risks and benefits of NIPT as it was not provided by public sectors. Some private providers assumed that women referred from the public sector had already received sufficient information about NIPT. The providers were also concerned about potential application of NIPT for further detection without regulation., Conclusions: Although the providers had good knowledge of clinical advantages of NIPT over conventional screening, they were uncertain about how to introduce NIPT to women. Guidelines are necessary to enable better coordination of public and private sectors services to enable women to make informed choices about the uptake of NIPT.

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.

Background: While 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., Methods: A cross-sectional survey among 327 obstetric professionals (237 midwives, 90 obstetricians) in Hong Kong., Results: Compared 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., Conclusions: Our 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.

Objectives: Stakeholders' views are essential for informing implementation strategies for non-invasive prenatal testing (NIPT). Little is known about such views in developing countries. We explored attitudes towards NIPT among obstetricians in Pakistan, a developing, Islamic country., Methods: A 35-item questionnaire was distributed and collected at eight events (a national conference and seven workshops in five cities) for obstetric professionals on advances in fetal medicine., Results: Responses from 113 obstetrician show positive attitudes towards implementation of NIPT: 95% agreed prevention of genetic conditions was a necessity, and 97% agreed public hospitals should provide prenatal screening tests. However, participants also agreed the availability of NIPT would increase social pressure on women to have prenatal screening tests and to terminate an affected pregnancy (53% and 63%, respectively). Most participants would not offer NIPT for sex determination (55%), although 31% would. The most valued aspects of NIPT were its safety, followed by its utility and then accuracy., Conclusion: Participants generally supported the implementation of NIPT but raised concerns about social implications. Therefore, national policy is needed to regulate the implementation of NIPT, and pretest information and post-test genetic counselling are needed to mitigate social pressure and support parents to make informed decisions. © 2017 John Wiley & Sons, Ltd., (© 2017 John Wiley & Sons, Ltd.)

Background: Patient autonomy in antenatal screening is a high priority for policy developers in many countries., Objective: This paper presents women's understandings of how health professionals should facilitate informed screening choices with an emphasis on their understandings of autonomy and advice., Design, Setting and Participants: The study was carried out in 2009 in the UK, using a qualitative approach. Ninety-eight participants of African, British White, Caribbean, Chinese and Pakistani origin had semi-structured interviews, which were analysed using framework analysis., Results: Four themes were identified during the analysis: 'Meanings of advice in antenatal screening: the advice continuum', 'Recognition of the role of health professionals in decision making', 'Understandings of advice in the context of autonomous decision making' and 'Reasons given for wanting advice'. Women said they valued advice from health professionals to make decisions about antenatal screening, but their understandings of 'advice' ranged from information giving only to direction about screening choices., Conclusion: Many women wanted health professionals to support the process of making informed choices by engaging in discussion and did not see advice as incompatible with making autonomous choices. However, some women wanted direction about whether to have a screening test or not, something which policy and guidelines explicitly prohibit. This may cause an ethical dilemma for health professionals who are required to both support women's preference for care and adhere to a policy of non-directiveness. Further clarification is needed on how health professionals should support the process of making informed choices when women ask for clear direction on screening choices., (© 2012 John Wiley & Sons Ltd.)

Objective: to explore midwives' perceptions of their role as facilitators of informed choice in antenatal screening., Design: qualitative., Setting: community midwives, Yorkshire and Humber region, UK., Participants: community midwives offering antenatal screening (n=15)., Method: semi-structured interviews analysed using Thematic Analysis., Findings: to facilitate informed choice, midwives highlighted both the importance and challenges of engaging in discussion with women, remaining non-directive, within tight timeframes, sometimes with women unable to communicate in English or with complex social needs., Conclusion: midwives varied in the degree to which they believed it was their role to (1) discuss rather than just provide information and (2) to check women's understanding of the information provided. Midwives were concerned about the constraints imposed by first trimester combined screening in terms of the limited time in which they had to facilitate informed choice and the women had to make a decision about screening. To ensure that women understand the options available to them and are able to exercise an informed choice, clinical guidelines are needed that set out how midwives can actively facilitate informed screening choices without compromising patient autonomy. This is especially important given the small 'window of opportunity' within which combined first trimester screening is a viable option., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

Objective: The aim of this research was to compare attitudes between women from different cultural and/or religious backgrounds toward prenatal diagnosis (PND) and termination of pregnancy (TOP) for 30 different conditions., Methods: A questionnaire examining parents' attitudes toward PND and TOP for 30 different conditions was completed by 100 Saudi, 222 UK-White, and 198 UK-Pakistani women. Comparison of overall attitudes with PND and TOP between groups was carried out, and a total score reflecting attitudes was obtained., Results: In general, there were positive attitudes toward PND among the three groups surveyed. The attitudes of Saudi and UK-Pakistani women toward PND were more favorable than UK-White women. Overall, acceptance of TOP was lower than for PND. For the majority of conditions, acceptance of TOP was highest in Saudi women and lowest in UK-Pakistani women., Conclusion: Attitudes toward TOP were significantly different between the three groups and may be influenced by cultural and/or religious factors. Availability of social services, genetic counseling, and rehabilitation centers may also influence attitude toward PND and TOP., (© 2012 John Wiley & Sons, Ltd.)

Informed choice is internationally recognised and accepted as an important aspect of ethical healthcare. In the U.K., NHS antenatal screening policies state that their primary aim is to facilitate reproductive informed choices. These policies, implemented within a multiethnic population, are largely guided by the ethical principle of autonomy. This study was carried out in 2009 in the U.K. and used Q-methodology to explore diversity in the value attached to autonomous informed choice in antenatal screening for genetic disorders and similarities and differences in this value in women from different ethnic origins. Ninety-eight participants of African, British White, Caribbean, Chinese and Pakistani origin completed a 41-statement Q-sort in English, French, Mandarin or Urdu. Q-Factor analysis produced five statistically independent viewpoints of the value of informed choice: choice as an individual right; choice informed by religious values; choice as a shared responsibility; choice advised by health professionals; and choice within the family context. The findings show that women hold a variety of views on the nature of informed choice, and that, contradictory to policies of autonomous informed choice, many women seek and value the advice of health professionals. The findings have implications for the role of health professionals in facilitating informed choice, quality of care and equity of access., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professionals, researchers and parents of children with the condition. Fifty statements originally developed for a UK study and translated into Urdu were Q-sorted by 60 participants. The use of factor analytic techniques identified three independent accounts and qualitative data collected during the Q-sorting exercise supported their interpretation. In two accounts, the 'will of God' was central to an understanding of the existence of people with DS although perceptions about the value and quality of life of the affected individual differed significantly between these accounts as did views about the impact on the family. The third account privileged a more 'scientific worldview' of DS as a genetic abnormality but also a belief that society can further contribute to disabling those affected. Attitudes towards prenatal testing and termination of pregnancy demonstrated that a belief in the will of Allah was not necessarily associated with a rejection of these technologies. Accounts reflect the religious, cultural and economic context of Pakistan and issues associated with raising a child with a learning disability in that country., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

The aim of this study is to explore reasons for and against prenatal testing and termination for a range of conditions in women from two different ethnic backgrounds. A total of 19 Pakistani and European women in West Yorkshire, UK, who either had a child with a genetic condition or had terminated a pregnancy for one, completed a questionnaire about their attitudes regarding prenatal testing and termination for 30 different fetal conditions and were interviewed about their reasons for their responses. There were more similarities than differences between the Pakistani and European white women. The most important factor in most women's decisions about termination of pregnancy was their perception of the quality of the life of a child with the genetic condition, in particular, whether the child would be "suffering." This was described as either physical suffering, as a result of medical treatment, or as emotional suffering, as a result of psychological and/or social factors. These findings highlight the need for detailed information about the potential quality of life for the child and the child's family to enable parents to make informed choices, particularly the extent to which the child is likely to suffer, the nature of such potential "suffering" and the extent to which the child could lead a "normal" life. The findings also challenge stereotypes about cultural differences in attitudes about termination of pregnancy.

Objectives: The Antenatal Screening Web Resource (AnSWeR) was designed to support informed prenatal testing choices by providing balanced information about disability, based on the testimonies of disabled people and their families. We were commissioned by the developers to independently evaluate the website. This paper focused on how participants evaluated AnSWeR in terms of providing balanced information., Setting: West Yorkshire., Participants: A total of 69 people were drawn from three groups: health professionals, people with personal experience of tested-for conditions (Down's syndrome, cystic fibrosis and spina bifida) and people representing potential users of the resource., Method: Data were collected via focus groups and electronic questionnaires., Results: Participants believed that information about the experience of living with the tested-for conditions and terminating a pregnancy for the conditions were important to support informed antenatal testing and termination decisions. However, there were differences in opinion about whether the information about the tested-for conditions was balanced or not. Some people felt that the inclusion of photographs of people with the tested-for conditions introduced biases (both positive and negative). Many participants were also of the opinion that AnSWeR presented insufficient information on termination of an affected pregnancy to support informed choice., Conclusion: This study highlighted the difficulty of designing 'balanced' information about tested-for conditions and a lack of methodology for doing so. It is suggested that AnSWeR currently provides a counterbalance to other websites that focus on the medical aspects of disability. Its aim to provide 'balanced' information would be aided by increasing the number and range of case studies available on the website.

Objectives: To compare the attitudes of women from two different ethnic backgrounds to prenatal testing for a range of conditions, and to see if "clusters" of attitudes to different conditions could be identified, for which prenatal testing might be offered as a package., Methods: Four hundred and twenty white and Pakistani women living in the UK were surveyed about their attitudes to prenatal testing and termination for 30 different fetal conditions. All participants had recently had a baby., Results: Pakistani women held more favourable attitudes to prenatal testing, but less favourable attitudes to termination than their white counterparts. Both groups were most in favour of termination for the same four conditions: anencephaly, trisomy 13 or 18, quadriplegia, Duchenne muscular dystrophy. The rank ordering of conditions was also similar. Only 4% of Pakistani and 2% of white women wanted no prenatal testing at all. Fewer than a quarter of participants would consider a termination of pregnancy for 85% of the conditions, but only 25% of Pakistani women and 6% of white women would consider termination for none of the conditions. More advanced statistical analyses were used to measure how closely associated the 30 conditions were in respondents' answers. These analyses identified a principal dimension, reflecting the overall perceived seriousness of the conditions, and a cluster of severely disabling conditions-anencephaly, trisomy 13 or 18, quadriplegia, Duchenne muscular dystrophy, and severe learning difficulties-which stood out from the rest. Even within this cluster there remained a considerable amount of individual variation., Conclusion: Women in the study wanted to make up their own minds about the conditions that to them merited testing or termination. These findings have implications for obtaining informed consent.

Objectives: Most births of children affected with beta-thalassaemia major in the United Kingdom are to parents of Pakistani origin. A popular explanation for this is that Pakistanis decline termination of pregnancy on religious grounds. However, various factors influence people's attitudes towards prenatal diagnosis and termination of pregnancy, which have not been investigated in a UK Pakistani sample. This study is aimed at exploring the attitudes of pregnant Pakistani women towards prenatal diagnosis and termination of pregnancy for beta-thalassaemia major in the North of England., Methods: Forty-three pregnant women tested for thalassaemia carrier status were interviewed following receipt of their test results. Interviews were analysed using the grounded theory approach., Results: Findings showed: (1) women's awareness of and attitudes towards prenatal diagnosis; (2) the relationship between attitudes towards prenatal diagnosis and termination of an affected foetus; (3) the relationship between attitudes towards termination of pregnancy and religious beliefs, perceptions of severity of the condition, influence of significant others, and (4) the impact of gestational age at the time of the offer of termination of pregnancy., Conclusions: Pakistani women's attitudes towards prenatal diagnosis and termination of pregnancy are influenced by various factors, and therefore their religion should not be taken as a proxy for their attitudes either for or against termination of pregnancy., (2006 John Wiley & Sons, Ltd.)

Background: While 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.Methods: A cross-sectional survey among 327 obstetric professionals (237 midwives, 90 obstetricians) in Hong Kong.Results: Compared 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.Conclusions: Our 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. [ABSTRACT FROM AUTHOR]

When making decisions about prenatal diagnosis, couples not only draw on their understanding of the condition but also broader aspects of their cultural identity. This article looks at how faith and religion mediate attitudes towards screening, prenatal diagnosis and termination of pregnancy for sickle cell and thalassaernia disorders. The article specifically reports on a qualitative study, which used focus groups from a variety of faith communities (Muslim, Sikh, Hindu and Christian), at risk of haemoglobin disorders, living in England. Our findings suggest that the decision about whether or not to have diagnostic testing generally related to attitudes towards the termination of pregnancy. The consequences of the condition were as important as religious beliefs to most people. More generally, faith beliefs emerged as negotiable and contingent: realized within a broader moral framework. Religion was felt not to be prescriptive and reproductive decisions were seen as personal. When making decisions, people utilize faith within a broader context of individual, family and social relationships. [ABSTRACT FROM AUTHOR]