scholarly journals Religious Perspectives on Precision Medicine in Singapore

2021 ◽  
Author(s):  
Hui Jin Toh ◽  
Angela Ballantyne ◽  
Serene Ai Kiang Ong ◽  
Chitra Sankaran ◽  
Hung Yong Tay ◽  
...  
Keyword(s):  
Precision Medicine ◽  
Knowledge Exchange ◽  
Genetic Discrimination ◽  
Social Resources ◽  
Religion And Spirituality ◽  
Data Governance ◽  
Private Industry ◽  
Public Benefit ◽  
Ethical Concerns ◽  
Religious Perspectives

AbstractPrecision medicine (PM) aims to revolutionise healthcare, but little is known about the role religion and spirituality might play in the ethical discourse about PM. This Perspective reports the outcomes of a knowledge exchange fora with religious authorities in Singapore about data sharing for PM. While the exchange did not identify any foundational religious objections to PM, ethical concerns were raised about the possibility for private industry to profiteer from social resources and the potential for genetic discrimination by private health insurers. According to religious authorities in Singapore, sharing PM data with private industry will require a clear public benefit and robust data governance that incorporates principles of transparency, accountability and oversight.

scholarly journals Data Collection, EHRs, and Poverty Determinations

2018 ◽  
Vol 46 (3) ◽  
pp. 622-628 ◽  
Author(s):  
Craig Konnoth
Keyword(s):  
Data Collection ◽  
Social Determinants ◽  
Clinical Care ◽  
Social Resources ◽  
Accurate Information ◽  
Imprecise Data ◽  
Individual Level ◽  
Public Benefit ◽  
Related Data ◽  
Starting Point

Collecting and deploying poverty-related data is an important starting point for leveraging data regarding social determinants of health in precision medicine. However, we must rethink how we collect and deploy such data. Current modes of collection yield imprecise data that is unsuited for research. Better data can be collected by cross-referencing other sources such as employers and public benefit programs, and by incentivizing and encouraging patients and providers to provide more accurate information. Data thus collected can be used to provide appropriate individual-level clinical and non-clinical care, and to systematically determine what share of social resources healthcare should consume.

scholarly journals Supporting international networks through platforms for standardised data collection—the European Registries for Rare Endocrine Conditions (EuRRECa) model

Endocrine ◽  
2021 ◽  
Author(s):  
S. R. Ali ◽  
J. Bryce ◽  
C. Smythe ◽  
M. Hytiris ◽  
A. L. Priego ◽  
...  
Keyword(s):  
Health Care Professionals ◽  
Knowledge Exchange ◽  
Stakeholder Involvement ◽  
Clinical Activity ◽  
Data Governance ◽  
Patient Reported ◽  
Long Term Follow Up ◽  
Life Threatening ◽  
National Boundaries

AbstractRare endocrine pathology is manifested by either a deficiency or excess of one or more hormones. These conditions can be life-threatening and are almost universally associated with long-term morbidity. Understanding the aetiology of these conditions requires multicentre collaboration and expertise, most often across national boundaries, with the capacity for long-term follow-up. The EuRRECa (European Registries for Rare Endocrine Conditions) project (www.eurreca.net), funded by the EU Health Programme, aims to support the needs of the wider endocrine community by maximising the opportunity for collaboration between patients, health care professionals and researchers across Europe and beyond. At the heart of the EuRRECa collaboration is a Core Endocrine Registry that collects a core dataset for all rare endocrine conditions that are covered within Endo-ERN. The registry incorporates patient reported markers of clinical outcome and will signpost participants to high-quality, disease-specific registries. Furthermore, an electronic surveillance programme (e-REC) captures clinical activity and epidemiology for these rare conditions. EuRRECa receives guidance compliant with the highest ethical standards from Expert Working Groups that align with the Main Thematic Groups of Endo-ERN. Security, data quality and data governance are cornerstones of this platform. Clear policies that are acceptable to patients, researchers and industry for data governance coupled with widespread dissemination and knowledge exchange through closely affiliated stakeholders will ensure sustainability beyond the current lifetime of the project. This paper describes the infrastructure that has been developed, stakeholder involvement, the data fields that are captured within the registry and details on the process for using the platform.

scholarly journals Considering religion and spirituality in precision medicine

2019 ◽  
Vol 10 (1) ◽  
pp. 195-203
Author(s):  
Karen H K Yeary ◽  
Kassandra I Alcaraz ◽  
Kimlin Tam Ashing ◽  
Chungyi Chiu ◽  
Shannon M Christy ◽  
...  
Keyword(s):  
Precision Medicine ◽  
Health Beliefs ◽  
Treatment Strategies ◽  
Great Promise ◽  
Religion And Spirituality ◽  
Clinical Practices ◽  
Patient Centered ◽  
Treatment Context ◽  
The Individual ◽  
High Level

Abstract The emerging era of precision medicine (PM) holds great promise for patient care by considering individual, environmental, and lifestyle factors to optimize treatment. Context is centrally important to PM, yet, to date, little attention has been given to the unique context of religion and spirituality (R/S) and their applicability to PM. R/S can support and reinforce health beliefs and behaviors that affect health outcomes. The purpose of this article is to discuss how R/S can be considered in PM at multiple levels of context and recommend strategies for integrating R/S in PM. We conducted a descriptive, integrative literature review of R/S at the individual, institutional, and societal levels, with the aim of focusing on R/S factors with a high level of salience to PM. We discuss the utility of considering R/S in the suitability and uptake of PM prevention and treatment strategies by providing specific examples of how R/S influences health beliefs and practices at each level. We also propose future directions in research and practice to foster greater understanding and integration of R/S to enhance the acceptability and patient responsiveness of PM research approaches and clinical practices. Elucidating the context of R/S and its value to PM can advance efforts toward a more whole-person and patient-centered approach to improve individual and population health.

Governing Commercial Access to Health Data for Public Benefit: Charity Law Solutions

2019 ◽  
Vol 28 (2) ◽  
pp. 247-269
Author(s):  
Jessica L Bell
Keyword(s):  
Health Data ◽  
Independent Data ◽  
Significant Extent ◽  
Data Governance ◽  
The Public ◽  
Public Benefit ◽  
Company Limited ◽  
Access To Health ◽  
Charity Commission ◽  
Access To Data

Abstract There is a growing body of evidence that supports the view that research participants and the public are concerned about commercial access to health data. Evidence also suggests that attitudes are ameliorated when charity organisations are involved and where research promises to deliver ‘public benefit’. To a significant extent, therefore, mechanisms that ensure the public benefit are key to sustaining public and participant support for research access to health data. As a regime founded on the concept of public benefit, charity law provides regulatory and governance mechanisms through which the public benefit of a charity is protected and promoted. This article examines the merits of charity law mechanisms and analyses their significance for governance of commercial access to health data for public benefit, using UK Biobank Ltd, a charitable company limited by guarantee, as an example. The article critically analyses three charity law mechanisms that operate to ensure that an organization providing access to data meets its public benefit requirements: charitable purposes; members’ and directors’ powers and duties; and accountability via the oversight powers of the Charity Commission and charity proceedings in court. The article concludes that there is potential for the charity model to be the benchmark for governing commercial access to health data for public benefit research, but notes the limitations of the model and recommends the appointment of independent data governance committees to further bolster the charity law framework.

scholarly journals Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research (Preprint)

2018 ◽  
Author(s):  
Kerina Helen Jones ◽  
Helen Daniels ◽  
Sharon Heys ◽  
David Vincent Ford
Keyword(s):  
Mobile Phone ◽  
Health Research ◽  
Significant Risk ◽  
Control Measures ◽  
Phone Call ◽  
Social Acceptability ◽  
Data Governance ◽  
Public Benefit ◽  
Public Views ◽  
Call Detail Records

UNSTRUCTURED Data derived from the plethora of networked digital devices hold great potential for public benefit. Among these, mobile phone call detail records (CDRs) present novel opportunities for research and are being used in a variety of health geography studies. Research suggests that the public is amenable to the use of anonymized CDRs for research; however, further work is needed to show that such data can be used appropriately. This study works toward an ethically founded data governance framework with social acceptability. Using a multifaceted approach, this study draws upon data governance arrangements in published health research using CDRs, with a consideration of public views and the public’s information expectations from mobile network operators, and data use scenarios of CDRs in health research. The findings were considered against a backdrop of legislative and regulatory requirements. CDRs can be used at various levels of data and geographic granularity and may be integrated with additional, publicly available or restricted datasets. As such, there may be a significant risk of identity disclosure, which must be mitigated with proportionate control measures. An indicative relative risk of the disclosure model is proposed to aid this process. Subsequently, a set of recommendations is presented, including the need for greater transparency, accountability, and incorporation of public views for social acceptability. This study addresses the need for greater clarity and consistency in data governance for CDRs in health research. While recognizing the need to protect commercial interests, we propose that these recommendations be used to contribute toward an ethically founded practical framework to promote the safe, socially acceptable use of CDR data for public benefit. This pattern needs to be repeated for the appropriate use of new and emerging data types from other networking devices and the wider internet of things.

The meaning and enactment of openness in Personalised and Precision Medicine

2020 ◽  
Author(s):  
Barbara Prainsack
Keyword(s):  
Public Policy ◽  
Social Justice ◽  
Precision Medicine ◽  
Data Sharing ◽  
Personalised Medicine ◽  
Digital Technologies ◽  
Data Sets ◽  
Public Benefit ◽  
Treatment And Prevention ◽  
Ontological Sense

Abstract Along with the proliferation of digital technologies and the datafication of wider areas of people’s bodies and lives, the meaning of Personalised Medicine has shifted. In contemporary Personalised and ‘Precision’ Medicine, openness typically features in terms of calls for data sharing to ensure the availability of the very data sets required for the personalisation of diagnosis, treatment, and prevention. But there are other, more fundamental ways of considering openness in the context of Personalised and Precision Medicine that set different goals for public policy: (1) in an ontological sense, pertaining to the openness of the category of the ‘person’ in Personalised and Precision Medicine; (2) in a pluralistic sense, regarding the plurality of personal and societal perspectives and values in healthcare; and (3) in an emancipatory sense, counteracting concentrations of power around corporate actors—including consumer tech companies—in the health domain. The enhancement of public benefit and social justice and the protection of privacy are key goals for public policy in this context.

Psychiatric Education

2018 ◽  
Author(s):  
Gerrit Glas
Keyword(s):  
Spiritual Needs ◽  
Psychiatric Education ◽  
Professional Lives ◽  
Religion And Spirituality ◽  
Psychiatric Residents ◽  
Ethical Concerns ◽  
Ethical Implications ◽  
Teaching Context ◽  
Spiritual Issues ◽  
Insight Into

This chapter addresses the topic of how to teach psychiatric residents to understand and deal with religion and spirituality in an ethically responsible and sensitive way. It focuses on ethical concerns of both trainees (learning the psychiatrist’s role in dealing with patients’ religious/spiritual issues) and educators (finding a proper stance with respect to religious/spiritual issues that emerge in the teaching context). The competence of professionalism as such is addressed, including ethical implications of dealing with patients’ religious/spiritual issues and interference of these issues with one’s own role fulfillment. Being a psychiatrist requires insight into not only the religious/spiritual needs of the patient but also the affective, moral, and spiritual aspects of the professional’s own journey. Sharing the narrative of one’s journey may provide fresh perspectives on how to deal with the tensions and brokenness that are inevitably part of our professional lives.

Conversational Morality and Information Circulation: How Tacit Notions about Good and Evil Influence Online Knowledge Exchange

2009 ◽  
Vol 68 (2) ◽  
pp. 218-229 ◽  
Author(s):  
Patricia Lange
Keyword(s):  
Informal Learning ◽  
Learning Environments ◽  
Open Source Software ◽  
Knowledge Exchange ◽  
User Needs ◽  
Informal Learning Environments ◽  
Ethical Concerns ◽  
Information Circulation ◽  
Good And Evil ◽  
Competing Technologies

Technologists often support the idea that knowledge exchange is best achieved by engaging in debate that does not involve moral considerations. Such a position is difficult to achieve given that technical choices are often morally laden. Indeed, many supporters of the Free and Open Source Software (F/OSS) movement use specific technologies because of the moral benefits of F/OSS and the ethical concerns about using alternative proprietary technologies and products. F/OSS supporters wish to promote a free exchange of ideas that is not censored by governments or corporations. Ironically, conversations about F/OSS and competing technologies in informal learning environments online can often foreclose wider debate if the participants unreflectively perform their moral affiliation to particular technologies. Participants in online technical communities often show their moral support of technologies and display alignment to certain values associated with the technologies in order to negotiate a favorable identity among peers who espouse similar ideas and goals. However, some interactive identity performances of technical affiliation may complicate online participants' ability to circulate wider knowledge and encourage broader, morally-neutral discussion of user needs and concerns.

The patients view on genetics and functional imaging for precision medicine: a willingness-to-pay analysis

2022 ◽  
Author(s):  
Kerstin Clasen ◽  
Cihan Gani ◽  
Christopher Schroeder ◽  
Olaf Riess ◽  
Daniel Zips ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Personalized Medicine ◽  
Willingness To Pay ◽  
Precision Medicine ◽  
Cancer Patients ◽  
Functional Imaging ◽  
Treatment Success ◽  
Diagnostic Modality ◽  
Ethical Concerns

Purpose: Willingness-to-pay (WTP) analyses can support allocation processes considering the patients preferences in personalized medicine. However, genetic testing especially might imply ethical concerns that have to be considered. Methods: A WTP questionnaire was designed to compare preferences for imaging and genetic testing in cancer patients and to evaluate potential ethical concerns. Results: Comparing the options of imaging and genetics showed comparable WTP values. Ethical concerns about genetic testing seemed to be minor. Treatment success was the top priority irrespective of the diagnostic modality. In general, the majority of patients considered personalized medicine to be beneficial. Conclusion: Most patients valued personalized approaches and rated the benefits of precision medicine of overriding importance irrespective of modality or ethical concerns.

scholarly journals Toward the Development of Data Governance Standards for Using Clinical Free-Text Data in Health Research: Position Paper (Preprint)

2019 ◽  
Author(s):  
Kerina H Jones ◽  
Elizabeth M Ford ◽  
Nathan Lea ◽  
Lucy J Griffiths ◽  
Lamiece Hassan ◽  
...  
Keyword(s):  
Personal Data ◽  
Position Paper ◽  
Free Text ◽  
Data Governance ◽  
Text Data ◽  
Public Benefit ◽  
The United Kingdom ◽  
Protection Legislation ◽  
Text Information ◽  
Rich Information

BACKGROUND Clinical free-text data (eg, outpatient letters or nursing notes) represent a vast, untapped source of rich information that, if more accessible for research, would clarify and supplement information coded in structured data fields. Data usually need to be deidentified or anonymized before they can be reused for research, but there is a lack of established guidelines to govern effective deidentification and use of free-text information and avoid damaging data utility as a by-product. OBJECTIVE This study aimed to develop recommendations for the creation of data governance standards to integrate with existing frameworks for personal data use, to enable free-text data to be used safely for research for patient and public benefit. METHODS We outlined data protection legislation and regulations relating to the United Kingdom for context and conducted a rapid literature review and UK-based case studies to explore data governance models used in working with free-text data. We also engaged with stakeholders, including text-mining researchers and the general public, to explore perceived barriers and solutions in working with clinical free-text. RESULTS We proposed a set of recommendations, including the need for authoritative guidance on data governance for the reuse of free-text data, to ensure public transparency in data flows and uses, to treat deidentified free-text data as potentially identifiable with use limited to accredited data safe havens, and to commit to a culture of continuous improvement to understand the relationships between the efficacy of deidentification and reidentification risks, so this can be communicated to all stakeholders. CONCLUSIONS By drawing together the findings of a combination of activities, we present a position paper to contribute to the development of data governance standards for the reuse of clinical free-text data for secondary purposes. While working in accordance with existing data governance frameworks, there is a need for further work to take forward the recommendations we have proposed, with commitment and investment, to assure and expand the safe reuse of clinical free-text data for public benefit.

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