scholarly journals Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore

2021 ◽  
Vol 11 (9) ◽  
pp. 921
Author(s):  
Tamra Lysaght ◽  
Angela Ballantyne ◽  
Hui Jin Toh ◽  
Andrew Lau ◽  
Serene Ong ◽  
...  
Keyword(s):  
Precision Medicine ◽  
Data Sharing ◽  
Health Research ◽  
Public Institutions ◽  
Government Agencies ◽  
Broad Consent ◽  
Social License ◽  
The Social ◽  
Age Range ◽  
Data Sensitivity

Background: Precision medicine (PM) programs typically use broad consent. This approach requires maintenance of the social license and public trust. The ultimate success of PM programs will thus likely be contingent upon understanding public expectations about data sharing and establishing appropriate governance structures. There is a lack of data on public attitudes towards PM in Asia. Methods: The aim of the research was to measure the priorities and preferences of Singaporeans for sharing health-related data for PM. We used adaptive choice-based conjoint analysis (ACBC) with four attributes: uses, users, data sensitivity and consent. We recruited a representative sample of n = 1000 respondents for an in-person household survey. Results: Of the 1000 respondents, 52% were female and majority were in the age range of 40–59 years (40%), followed by 21–39 years (33%) and 60 years and above (27%). A total of 64% were generally willing to share de-identified health data for IRB-approved research without re-consent for each study. Government agencies and public institutions were the most trusted users of data. The importance of the four attributes on respondents’ willingness to share data were: users (39.5%), uses (28.5%), data sensitivity (19.5%), consent (12.6%). Most respondents found it acceptable for government agencies and hospitals to use de-identified data for health research with broad consent. Our sample was consistent with official government data on the target population with 52% being female and majority in the age range of 40–59 years (40%), followed by 21–39 years (33%) and 60 years and above (27%). Conclusions: While a significant body of prior research focuses on preferences for consent, our conjoint analysis found consent was the least important attribute for sharing data. Our findings suggest the social license for PM data sharing in Singapore currently supports linking health and genomic data, sharing with public institutions for health research and quality improvement; but does not support sharing with private health insurers or for private commercial use.

scholarly journals Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand

2018 ◽  
Vol 19 (1) ◽  
Author(s):  
Phaik Yeong Cheah ◽  
Nattapat Jatupornpimol ◽  
Borimas Hanboonkunupakarn ◽  
Napat Khirikoekkong ◽  
Podjanee Jittamala ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Data Sharing ◽  
Health Research ◽  
Research Data ◽  
Broad Consent

scholarly journals Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

2019 ◽  
pp. medethics-2019-105651 ◽  
Author(s):  
Shona Kalkman ◽  
Johannes van Delden ◽  
Amitava Banerjee ◽  
Benoît Tyl ◽  
Menno Mostert ◽  
...  
Keyword(s):  
Empirical Evidence ◽  
Data Sharing ◽  
Health Research ◽  
Public Attitudes ◽  
Health Data ◽  
Narrative Review ◽  
Great Promise ◽  
The Public ◽  
Social License ◽  
Public Views

IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing patients’ and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed (MEDLINE), Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised.ResultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.ConclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests.

Fictions of the Human Right to Health: Writing Against the Postcolonial Exotic in Western Medicine

2018 ◽  
Author(s):  
Rosemary J. Jolly
Keyword(s):  
Health Research ◽  
Western Medicine ◽  
Scientific Method ◽  
Medical Humanities ◽  
Right To Health ◽  
The Body ◽  
Health And Wellness ◽  
Human Right ◽  
Cultural Specificity ◽  
The Social

The last decade has witnessed far greater attention to the social determinants of health in health research, but literary studies have yet to address, in a sustained way, how narratives addressing issues of health across postcolonial cultural divides depict the meeting – or non-meeting – of radically differing conceptualisations of wellness and disease. This chapter explores representations of illness in which Western narrators and notions of the body are juxtaposed with conceptualisations of health and wellness entirely foreign to them, embedded as the former are in assumptions about Cartesian duality and the superiority of scientific method – itself often conceived of as floating (mysteriously) free from its own processes of enculturation and their attendant limits. In this respect my work joins Volker Scheid’s, in this volume, in using the capacity of critical medical humanities to reassert the cultural specificity of what we have come to know as contemporary biomedicine, often assumed to be

Prophets and Profits of Racial Science

2018 ◽  
Vol 5 (1) ◽  
Author(s):  
Ruha Benjamin
Keyword(s):  
Political Economy ◽  
Social Construction ◽  
Precision Medicine ◽  
Group Differences ◽  
Racial Science ◽  
The Social ◽  
The Relationship ◽  
Racial Ethnic

In this response to Terence Keel and John Hartigan’s debate over the social construction of race, I aim to push the discussion beyond the terrain of epistemology and ideology to examine the contested value of racial science in a broader political economy. I build upon Keel’s concern that even science motivated by progressive aims may reproduce racist thinking and Hartigan’s proposition that a critique of racial science cannot rest on the beliefs and intentions of scientists. In examining the value of racial-ethnic classifications in pharmacogenomics and precision medicine, I propose that analysts should attend to the relationship between prophets of racial science (those who produce forecasts about inherent group differences) and profits of racial science (the material-semiotic benefits of such forecasts). Throughout, I draw upon the idiom of speculation—as a narrative, predictive, and financial practice—to explain how the fiction of race is made factual, again and again. 

scholarly journals Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues

2021 ◽  
Vol 13 (2) ◽  
pp. 179-194
Author(s):  
Serene Ong ◽  
Jeffrey Ling ◽  
Angela Ballantyne ◽  
Tamra Lysaght ◽  
Vicki Xafis
Keyword(s):  
Precision Medicine ◽  
Ethical Issues ◽  
Personalised Medicine ◽  
Large Population ◽  
Data Sets ◽  
Visual Aids ◽  
Policy Makers ◽  
The Social ◽  
Genomic Analyses ◽  
Common Understanding

AbstractGovernments are investing in precision medicine (PM) with the aim of improving healthcare through the use of genomic analyses and data analytics to develop tailored treatment approaches for individual patients. The success of PM is contingent upon clear public communications that engender trust and secure the social licence to collect and share large population-wide data sets because specific consent for each data re-use is impractical. Variation in the terminology used by different programmes used to describe PM may hinder clear communication and threaten trust. Language is used to create common understanding and expectations regarding precision medicine between researchers, clinicians and the volunteers. There is a need to better understand public interpretations of PM-related terminology. This paper reports on a qualitative study involving 24 focus group participants in the multi-lingual context of Singapore. The study explored how Singaporeans interpret and understand the terms ‘precision medicine’ and ‘personalised medicine’, and which term they felt more aptly communicates the concept and goals of PM. Results suggest that participants were unable to readily link the terms with this area of medicine and initially displayed preferences for the more familiar term of ‘personalised’. The use of visual aids to convey key concepts resonated with participants, some of whom then indicated preferences for the term ‘precision’ as being a more accurate description of PM research. These aids helped to facilitate dialogue around the ethical and social value, as well as the risks, of PM. Implications for programme developers and policy makers are discussed.

The Social Value of Research and Health Research Priority-Setting

2021 ◽  
Author(s):  
D.M. Wenner
Keyword(s):  
Clinical Research ◽  
Priority Setting ◽  
Health Research ◽  
Human Subjects ◽  
Social Value ◽  
Research Priority ◽  
The Social ◽  
Research Questions ◽  
Social Scientific ◽  
Health Research Priority Setting

This chapter discusses the social value requirement in clinical research and its intersection with health research priority-setting. The social value requirement states that clinical research involving human subjects is only ethical if it has the potential to produce socially valuable knowledge. The chapter discusses various ways to specify both the justification for and the content of the social value requirement. It goes on to consider the implications of various accounts of the content and justification for the requirement for the ethics of health research priority-setting, showing that while some accounts of the requirement are largely silent with respect to how research questions should be prioritized, others entail robust obligations to prioritize research that might benefit particular groups. The chapter also briefly examines potential arguments for something like a social value requirement in other kinds of research, specifically social scientific research.

Indigenous standpoint theory as a theoretical framework for decolonizing social science health research with American Indian communities

2021 ◽  
pp. 117718012110420
Author(s):  
Genevieve R Cox ◽  
Paula FireMoon ◽  
Michael P Anastario ◽  
Adriann Ricker ◽  
Ramey Escarcega-Growing Thunder ◽  
...  
Keyword(s):  
Social Sciences ◽  
Social Science ◽  
American Indian ◽  
American Indians ◽  
Health Research ◽  
Cultural Context ◽  
Ways Of Knowing ◽  
Standpoint Theory ◽  
Theoretical Frameworks ◽  
The Social

Theoretical frameworks rooted in Western knowledge claims utilized for public health research in the social sciences are not inclusive of American Indian communities. Developed by Indigenous researchers, Indigenous standpoint theory builds from and moves beyond Western theoretical frameworks. We argue that using Indigenous standpoint theory in partnership with American Indian communities works to decolonize research related to American Indian health in the social sciences and combats the effects of colonization in three ways. First, Indigenous standpoint theory aids in interpreting how the intersections unique to American Indians including the effects of colonization, tribal and other identities, and cultural context are linked to structural inequalities for American Indian communities. Second, Indigenous standpoint theory integrates Indigenous ways of knowing with Western research orientations and methodologies in a collaborative process that works to decolonize social science research for American Indians. Third, Indigenous standpoint theory promotes direct application of research benefits to American Indian communities.

American Medical Research, Past and Present, Studies of the New York Academy of Medicine Committee on Medicine and the Changing Order

PEDIATRICS ◽  
1949 ◽  
Vol 3 (2) ◽  
pp. 253-253
Author(s):  
C. D. MAY
Keyword(s):  
New York ◽  
American Medical ◽  
Medical Research ◽  
Social Order ◽  
Historical Development ◽  
York Academy ◽  
Government Agencies ◽  
The Social

This monograph is one of a series resulting from studies by the Committee on Medicine and the Changing Order of the New York Academy of Medicine. The objective in this report was to trace the historical development of medical research and to define and describe the role of medical research in the social order particularly as regards support for research from government agencies. The comprehensive grasp of the complexities of medical research which Dr. Shryock reveals commands genuine admiration and respect from anyone engaged in such research. Indeed, few engaged in various aspects of medical research could claim anything like his familiarity with the broad outlines of this field.

THEORETICAL ASPECTS OF UNDERSTANDING THE ESSENCE OF ADMINISTRATIVE MANAGEMENT

2017 ◽  
Author(s):  
Olga Kryveshko ◽  
◽  
Galina Kynditska ◽  
Keyword(s):  
Public Administration ◽  
The United States ◽  
Public Institutions ◽  
Scientific Concept ◽  
Late Nineteenth Century ◽  
Government Agencies ◽  
General Management ◽  
Administrative Management ◽  
Commercial Organizations ◽  
Type Of Management

In the article the essence of administrative management as an economic category is considered. Found that the current interpretation of this concept in Western Europe and Ukraine are different. Administrative management as a scientific concept originated in the late nineteenth century in the United States and Europe as a way of managing government agencies and organizations. However, in the process of evolution of this concept, administrative management is transformed into type of management activity in business. According to the analysis of domestic publications, in Ukraine, mainly administrative management is perceived as public administration, and its objects are employees and processes in government agencies and organizations. The analysis of modern publications and observation of the activities of enterprises made it possible to make the statement about necessity of implementation the principles of administrative management for business representatives. There are three main approaches to understanding the essence of administrative management: as a school of management, as public administration, as a special type of management in commercial organizations. It was found that Western scientific thought understands administrative management as the process of managing information through people or as a general management of the organization. The existing interpretations of administrative management for commercial organizations in domestic researches are grouped in two types: 1) as management at the institutional level; 2) as general management of the organization. As a result of the analysis, the conclusion that the essence of administrative management for business and government agencies is different is made. It is noted that administrative processes are typical for auxiliary (support) departments of enterprises. It is proposed to identify administrative management in the profitable organizations as management of the processes in auxiliary departments to achieve the basic purposes of the enterprise and maintenance of uninterrupted functioning of operational area. The essence of administrative managing for public institutions is much broader. It is proposed to define it as any managing in public institutions, aimed at both its internal environment and society.

Standard of Living, Health, and Utilization of Social and Health Services a Survey of the Population of Three Districts in Malmö

1977 ◽  
Vol 5 (2) ◽  
pp. 97-103
Author(s):  
Lars Dahlin
Keyword(s):  
Residential Areas ◽  
Random Choice ◽  
Health Authorities ◽  
The Social ◽  
Background Data ◽  
Impaired Health ◽  
Care Health ◽  
Families With Children ◽  
Age Range ◽  
Made In

A survey of the social and medical conditions of the population in three well-defined districts in Malmö was made in order to obtain background data for the planning of open care. A random choice was made of 70 households from each of the three residential areas for interview purposes. Available data concerning actual individuals were collected from the social and health authorities. Wide variations existed between the three districts. The inhabitants of Kroksbäck, mostly young families with children, were comparatively healthy somatically, whereas many had social problems; mental troubles were common too. In Lorensborg, the inhabitants did not conspicuously deviate from the average, as regards complaints. In Ellstorp, with its elderly population, two in three had impaired health, mostly in the form of somatic complaints; moreover their teeth were in poor condition. One in three of all interviewees had felt ill in some respect during the fortnight preceding the interview, and more than half had some current health problem. Eleven percent of all interviewees had sought medical advice during this fortnight. One in three of the interviewees was using prescribed remedies at the time of the interview. Eleven percent of those in the gainfully employable age range had been sick-listed for some part of the fortnight. The need for a general practitioner service, continuity of care, health centres and integration of social and medical care is discussed.

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