Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and Policy-relevant Ethics in Singapore (SHAPES) Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AIassisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data.
Facilitators and barriers for result sharing are similar to those among Western women. A framework to explain Asian patients' decision-making process identifies optimal counselling opportunities to enhance communication with family.
As opposed to a 'one size fits all' approach, precision medicine uses relevant biological (including genetic), medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone's disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in the Ethical Framework for Big Data in Health and Research (Xafis et al. 2019) to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner.
In this article, I explore the effectiveness of state work-family balance policies in shaping individual reproductive decisions in Singapore, the city-state that ranked third in the Global Competitiveness Report 2009 (World Economic Forum, 2009). I draw on in-depth data from interviews with women of childbearing years, as well as data from focus group discussions with women and their peers, spouses, prospective spouses, and parents. Major findings suggest that to be effective, the state's work-family balance policy measures have to recognize citizens' diverse life plans as well as the attendant requests for certain state benefits and workplace rightssuch as expanding the quota for paid maternity and paternity leave, having family leave financed by the government rather than by the employer, protecting individuals from dismissal on the grounds of leave of absence, and guaranteeing Singaporean workers the right to request shorter, flexible working hours. Despite the limitations of nonprobability sampling, this study indicates that individual preference is associated with an individual's educational attainment and ethnicity. Finally, this study concludes that the effectiveness of any work-family balance policy is a function not merely of individual aspirations but also of the perceived consequences of meeting workplace expectations; thus, the current policies are particularly ineffective in addressing the concerns of employees in private firms. Taken together, these findings suggest that the state needs to reconsider the economic production-at-all-cost approach and become more proactive in supporting workers' right to paid employment and family life.
Background Genetic screening (GS), defined as the clinical testing of a population to identify asymptomatic individuals with the aim of providing those identified as high risk with prevention, early treatment, or reproductive options. Genetic screening (GS) improves patient outcomes and is accessible to the community. Family physicians (FPs) are ideally placed to offer GS. There is a need for FPs to adopt GS to address anticipated genetic specialist shortages. Objective To explore FP attitudes, perceived roles, motivators and barriers, towards GS; and explore similarities and differences between private and public sector FPs. Methods We developed a semi-structured interview guide using existing literature. We interviewed private and public sector FPs recruited by purposive, convenience and snowballing strategies, by telephone or video to theme saturation. All sessions were audio-recorded, transcribed and coded for themes by two independent researchers with an adjudicator. Results Thirty FPs were interviewed (15 private, 15 public). Theme saturation was reached for each group. A total of 12 themes (6 common, 3 from private-practice participants, 3 public-employed participants) emerged. Six common major themes emerged: personal lack of training and experience, roles and relevance of GS to family medicine, reluctance and resistance to adding GS to practice, FP motivations for adoption, patient factors as barrier, and potential solutions. Three themes (all facilitators) were unique to the private group: strong rapport with patients, high practice autonomy, and high patient literacy. Three themes (all barriers) were unique to the public group: lack of control, patients’ lower socioeconomic status, and rigid administrative infrastructure. Conclusion FPs are motivated to incorporate GS but need support for implementation. Policy-makers should consider the practice setting when introducing new screening functions. Strategies to change FP behaviours should be sensitive to their sense of autonomy, and the external factors (either as facilitators or as barriers) shaping FP practices in a given clinical setting.
This paper examines intergenerational and gender relations in the Chinese family system by comparing the division of household labor in nuclear and extended family households. Indepth interview data with thirty-seven new Taiwanese immigrants in Canada show that, in their household practices in Taiwan, the presence of the older generation intensifies the gendered division of labor between spouses, even in matrilocal residences . Husbands do not participate in housework in either patrilocal or matrilocal households. However, shared housework between couples is observed among less well-to-do nuclear families. In general, the dominance of traditional gender norms prevails, especially under extended family living arrangements. In contrast, nuclear family arrangements provide conditions for gender equality.
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