40 research outputs found
Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues
No full text10.1007/s41649-021-00165-3Asian Bioethics Revie
sj-docx-1-bds-10.1177_20539517221108988 - Supplemental material for Sharing precision medicine data with private industry: Outcomes of a citizens’ jury in Singapore
No full textSupplemental material, sj-docx-1-bds-10.1177_20539517221108988 for Sharing precision medicine data with private industry: Outcomes of a citizens’ jury in Singapore by Angela Ballantyne, Tamra Lysaght, Hui Jin Toh, Serene Ong, Andrew Lau, G Owen Schaefer, Vicki Xafis, E Shyong Tai, Ainsley J Newson, Stacy Carter, Chris Degeling and Annette Braunack-Mayer in Big Data & Society</p
Ethical language and decision-making for prenatally diagnosed lethal malformations
No full textIn clinical practice, and in the medical literature, severe congenital malformations such as trisomy 18, anencephaly, and renal agenesis are frequently referred to as 'lethal' or as 'incompatible with life'. However, there is no agreement about a definition of lethal malformations, nor which conditions should be included in this category. Review of outcomes for malformations commonly designated 'lethal' reveals that prolonged survival is possible, even if rare. This article analyses the concept of lethal malformations and compares it to the problematic concept of 'futility'. We recommend avoiding the term 'lethal' and suggest that counseling should focus on salient prognostic features instead. For conditions with a high chance of early death or profound impairment in survivors despite treatment, perinatal and neonatal palliative care would be ethical. However, active obstetric and neonatal management, if desired, may also sometimes be appropriate.Dominic Wilkinson, Lachlan de Crespigny, Vicki Xafi
A randomised controlled trial to compare opt-in and opt-out parental consent for childhood vaccine safety surveillance using data linkage: study protocol
No full textExtent: 10p.Background: The Vaccine Assessment using Linked Data (VALiD) trial compared opt-in and opt-out parental consent for a population-based childhood vaccine safety surveillance program using data linkage. A subsequent telephone interview of all households enrolled in the trial elicited parental intent regarding the return or non-return of reply forms for opt-in and opt-out consent. This paper describes the rationale for the trial and provides an overview of the design and methods. Methods/Design: Single-centre, single-blind, randomised controlled trial (RCT) stratified by firstborn status. Mothers who gave birth at one tertiary South Australian hospital were randomised at six weeks post-partum to receive an opt-in or opt-out reply form, along with information explaining data linkage. The primary outcome at 10 weeks post-partum was parental participation in each arm, as indicated by the respective return or non-return of a reply form (or via telephone or email response). A subsequent telephone interview at 10 weeks post-partum elicited parental intent regarding the return or non-return of the reply form, and attitudes and knowledge about data linkage, vaccine safety, consent preferences and vaccination practices. Enrolment began in July 2009 and 1,129 households were recruited in a three-month period. Analysis has not yet been undertaken. The participation rate and selection bias for each method of consent will be compared when the data are analysed. Discussion: The VALiD RCT represents the first trial of opt-in versus opt-out consent for a data linkage study that assesses consent preferences and intent compared with actual opting in or opting out behaviour, and socioeconomic factors. The limitations to generalisability are discussed.Jesia G Berry, Philip Ryan, Annette J Braunack-Mayer, Katherine M Duszynski, Vicki Xafis, Michael S Gold, the Vaccine Assessment Using Linked Data (VALiD) Working Grou
The acceptability of conducting data linkage research without obtaining consent: lay people's views and justifications
No full textA key ethical issue arising in data linkage research relates to consent requirements. Patients' consent preferences in the context of health research have been explored but their consent preferences regarding data linkage specifically have been under-explored. In addition, the views on data linkage are often those of patient groups. As a result, little is known about lay people's views and their preferences about consent requirements in the context of data linkage. This study explores lay people's views and justifications regarding the acceptability of conducting data linkage research without obtaining consent.A qualitative study explored lay people's views regarding consent requirements in data linkage via four hypothetical data linkage scenarios of increasing complexity. Prior to considering the scenarios, participants were provided with information regarding best practice data linkage processes via discussion and a diagrammatic representation of the process.Lay people were able to understand the intricate processes involved in data linkage and the key protections afforded within a short amount of time. They were supportive of data linkage research and, on the whole, believed it should be conducted without consent provided a data linkage organization de-identifies the data used so that researchers do not handle identifiable data. Many thought that de-identified data holds a different status to identifiable data and should be used without specific consent in research that aims to benefit society. In weighing up conflicting values and interests, participants shifted consent preferences before arriving at their final consent preference for each scenario and provided justifications for their choices. They considered the protection of people's information, societal benefits, and the nature and constraints of research and recognized that these need to be balanced.With some exposure to the features of data linkage, lay people have the capacity to understand the processes sufficiently in order to consider ethical issues associated with consent preferences. Shifts in views reveal the complexity of such decisions. While privacy protection remained an important consideration for most participants, adequate protection measures adopted in best practice data linkage were viewed by most as protection enough for data linkage to proceed without specific individual consent.Vicki Xafi
The ethical, legal, and social acceptability of health data linkage in the Australian context: an investigation of current practices, perceptions, and public attitudes.
No full textVast collections of electronic data are held by a variety of health organisations, including government and non-government agencies, hospitals and universities. Data linkage involves combining such data sets for secondary purposes such as population health research. Data linkage currently occurs in Australia and is rapidly developing into a key tool both for Government and researchers. There are considerable benefits to data linkage, including the ability to conduct high quality research which may lead to advances in clinical practice, the development of public health policy, the prevention of disease, the conduct of public health surveillance. However, the associated ethical and legal issues require analysis and consideration to determine the moral and legal ramifications of such uses of data and so that indeterminate ethical and legal issues do not restrict agencies’ and researchers’ ability to fully support a co-ordinated national approach to data linkage. Lagging substantially behind recent developments in Australia and internationally is knowledge and clarity about the public’s acceptance of data linkage practices. This thesis presents findings of a multi-phase project comprising a theoretical component and two empirical studies. The theoretical component examines the ethical, legal and social acceptability of data linkage (Phase 1), and two empirical components (Phases 2 and 3) present the views of community members about data linkage. In Phase 1 I argue that the non-consensual use of data is morally acceptable under certain conditions. It is currently legally acceptable in Australia despite certain impediments arising from the strict interpretation and complexity of Australian privacy legislation, an issue which is currently being addressed through amendments to the Australian Commonwealth privacy legislation. Phase 2 comprised in-depth face-to-face interviews to determine participant views in relation to privacy and their preferred consent options in four hypothetical data linkage scenarios. Phase 3 involved the administration of a questionnaire before and after a citizens’ jury to gauge, amongst other issues, these citizens’ attitudes to health data linkage and to determine whether the provision of detailed information about the data linkage process, as well as the ethical and legal issues it raises, had an impact on previously held views and perceptions. Participants quickly acquired an understanding of data linkage. They generally supported the non-consensual use of data provided that there were protection mechanisms in place such as the removal of identifiable data. Most participants believed that consent should be sought for data linkage projects if the linkage were being conducted by researchers with fully identifiable data. Participants weighed up opposing values such as the need for privacy against the potential benefits arising from data linkage research using an informal moral reasoning framework. The wealth of justifications for their decisions highlighted the participants’ values. This research aims to contribute to the Australian and international literature at a time when this method of combining data is being considered by researchers world-wide. In addition, the findings will assist in discussions and activities in relation to the development of the national data linkage framework, a key Australian Government research target within the next five to ten years.Thesis (Ph.D.) -- University of Adelaide, School of Population Health and School of Paediatrics and Reproductive Health, 201
Differences in the structure of conversations between a father-child and mother-child dyad: a preliminary investigation
No full textA father-child and a mother-child conversation were analysed based on Stech's (1982) framework in order to determine whether there were structural differences between the two conversations. The child subject was a male, 3:7 years of age. Structural complexity, topic initiation, topic maintenance and development were the key areas examined. The father-child conversation displayed greater structural complexity and a greater balance in contributions between father and child. This conversation also displayed greater cohesion than the mother-child conversation. Conversely, in the mother-child conversation, the mother had greater control of the conversation and introduced most of the topics as a result of which the child contributed less than in the father-child conversation. These differences can be attributed to speaker style, gender-based linguistic differences and parental roles
Overruling parental decisions in paediatric medicine: A comparison of Diekema’s Harm Threshold Framework and the Zone of Parental Discretion Framework
No full textEthically Justified Restrictions on Citizen Science: A Perspective from Singapore
No full text10.1080/15265161.2019.1619872The American Journal of Bioethics19838-4
