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Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives.

ABSTRACT: BACKGROUND:Emerging genomic technologies promise more efficient infectious disease control. Whole genome sequencing (WGS) is increasingly being used in tuberculosis (TB) diagnosis, surveillance, and epidemiology. However, while the use of WGS by public health agencies may raise ethical, legal, and socio-political concerns, these challenges are poorly understood. METHOD:Between November 2017 and April 2018, we conducted semi-structured interviews with 22 key stakeholders across the fields of governance and policy, public health, and laboratory sciences representing the major jurisdictions currently using WGS in national TB programs. Thematic analysis of the interviews was conducted using NVivo 11. RESULTS:Respondents identified several ethical and practical challenges associated with WGS in TB care and surveillance, all related to issues of trust, including: 1) the power of public health; 2) data sharing and profits derived from surveillance efforts; and 3) concerns regarding who has access to, and can benefit from, the technology. Additional challenges included: the potential utility that WGS adds to a public health program, the risks associated with linking necessary epidemiological metadata to the genomic data, and challenges associated with jurisdictional capacity to implement the technology. CONCLUSIONS:Successful implementation of WGS is dependent on fostering relationships of trust between those working with genomics technology and those directly impacted by it, including clinicians. Building trust (a) between the public and the public health agencies and (b) within public health agencies themselves is critical due to the inherent complexity of WGS and its implementation for communicable disease control purposes.

SUBMITTER: Jackson C

PROVIDER: S-EPMC6610958 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives.

Jackson Carly C Gardy Jennifer L JL Shadiloo Hedieh C HC Silva Diego S DS

BMC medical ethics 20190704 1

<h4>Background</h4>Emerging genomic technologies promise more efficient infectious disease control. Whole genome sequencing (WGS) is increasingly being used in tuberculosis (TB) diagnosis, surveillance, and epidemiology. However, while the use of WGS by public health agencies may raise ethical, legal, and socio-political concerns, these challenges are poorly understood.<h4>Method</h4>Between November 2017 and April 2018, we conducted semi-structured interviews with 22 key stakeholders across the ...[more]

PMID: 31272443

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Project description:IntroductionData linkage for health research purposes enables the answering of countless new research questions, is said to be cost effective and less intrusive than other means of data collection. Nevertheless, health researchers are currently dealing with a complicated, fragmented, and inconsistent regulatory landscape with regard to the processing of data, and progress in health research is hindered.AimWe designed a qualitative study to assess what different stakeholders perceive as ethical and legal obstacles to data linkage for health research purposes, and how these obstacles could be overcome.MethodsTwo focus groups and eighteen semi-structured in-depth interviews were held to collect opinions and insights of various stakeholders. An inductive thematic analysis approach was used to identify overarching themes.ResultsThis study showed that the ambiguity regarding the 'correct' interpretation of the law, the fragmentation of policies governing the processing of personal health data, and the demandingness of legal requirements are experienced as causes for the impediment of data linkage for research purposes by the participating stakeholders. To remove or reduce these obstacles authoritative interpretations of the laws and regulations governing data linkage should be issued. The participants furthermore encouraged the harmonisation of data linkage policies, as well as promoting trust and transparency and the enhancement of technical and organisational measures. Lastly, there is a demand for legislative and regulatory modifications amongst the participants.ConclusionsTo overcome the obstacles in data linkage for scientific research purposes, perhaps we should shift the focus from adapting the current laws and regulations governing data linkage, or even designing completely new laws, towards creating a more thorough understanding of the law and making better use of the flexibilities within the existing legislation. Important steps in achieving this shift could be clarification of the legal provisions governing data linkage by issuing authoritative interpretations, as well as the strengthening of ethical-legal oversight bodies.

Project description:BackgroundFew studies describe system-level challenges or facilitators to implementing population-based colorectal cancer (CRC) screening outreach programs. Our qualitative study explored viewpoints of multilevel stakeholders before, during, and after implementation of a centralized outreach program. Program implementation was part of a broader quality-improvement initiative.MethodsDuring 2008-2010, we conducted semi-structured, open-ended individual interviews and focus groups at Kaiser Permanente Northwest (KPNW), a not-for-profit group model health maintenance organization using the practical robust implementation and sustainability model to explore external and internal barriers to CRC screening. We interviewed 55 stakeholders: 8 health plan leaders, 20 primary care providers, 4 program managers, and 23 endoscopy specialists (15 gastroenterologists, 8 general surgeons), and analyzed interview transcripts to identify common as well as divergent opinions expressed by stakeholders.ResultsThe majority of stakeholders at various levels consistently reported that an automated telephone-reminder system to contact patients and coordinate mailing fecal tests alleviated organizational constraints on staff's time and resources. Changing to a single-sample fecal immunochemical test (FIT) lessened patient and provider concerns about feasibility and accuracy of fecal testing. The centralized telephonic outreach program did, however, result in some screening duplication and overuse. Higher rates of FIT completion and a higher proportion of positive results with FIT required more colonoscopies.ConclusionsAddressing barriers at multiple levels of a health system by changing the delivery system design to add a centralized outreach program, switching to a more accurate and easier-to-use fecal test, and providing educational and electronic support had both benefits and problematic consequences. Other health care organizations can use our results to understand the complexities of implementing centralized screening programs.

Project description:IntroductionThe process of controlled organ donation after circulatory determination of death (cDCDD) results in ischaemic injury to organs and leads to poorer outcomes in organ recipients. Although not yet used in Canada, normothermic regional perfusion (NRP) is a perfusion technology used postmortem with cDCDD donors to selectively restore perfusion of oxygenated blood to target organs in situ, reversing ischaemic injury and improving organ viability and post-transplant outcomes. However, NRP poses significant ethical challenges. To preserve trust in deceased donation, these ethical challenges must be addressed to the satisfaction of Canadian stakeholders before NRP's implementation. This study will identify ethical issues pertaining to NRP and explore perspectives of NRP among key stakeholders. By developing an explanatory framework delineating how stakeholder perceptions of NRP's ethical implications impact trust in Canada's donation and transplantation systems, this study will inform the development of responsible policy on NRP's use in Canada.Methods and analysisThis study includes two workstreams. Workstream 1 is a scoping review of medical and bioethical literature to identify ethical issues stemming from NRP. We will apply a common search string across Medline, PubMed (other than Medline) and Embase to identify relevant articles. We will identify grey literature through Google searches, websites of organ donation organisations and consultation with our research network. No date limits will be applied. All peer-reviewed publications, commentaries, editorials or documents that engage with ethical issues in NRP (or conceptual and empirical issues as they relate to these ethical issues) will be included. News articles, conference abstracts and publications not in English will be excluded. Workstream 2 consists of interviews with healthcare providers, institutional stakeholders, organ recipients and deceased donors' family members (n=24-36), as well as focus groups with healthcare providers involved in deceased donation and transplantation (n=20-32). Constructivist grounded theory methodology will guide data collection and analysis in workstream 2.Ethics and disseminationThis study was approved by Western University's research ethics committee (Western REM; ID: 120001). All participants will be asked to provide written informed consent to participate. Findings will be shared with Canadian organ donation and transplantation organisations, presented at national conferences and published in medical journals.

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Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives.

Publications

Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives.

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