Normative and conceptual ELSI research: what it is, and why it’s important

Parker, Lisa S.; Sankar, Pamela; Boyer, Joy T; McEwen, J. D.; Kaufman, David

doi:10.1038/s41436-018-0065-x

Cited by 23 publications

(12 citation statements)

References 25 publications

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“…In most contexts, the focus on normative questions within ELSI research means that its impacts on human health can be indirect and difficult to quantify, especially by comparison with those arising from basic science, translational, and clinical research ( Parker et al, 2019 ). Given the sensitive nature of genomics as the subject matter, a history of research exploitation, and lawsuits and policy change in tribal contexts, ELSI work seems essential to ameliorating these issues for the increased benefit and quicker implementation of state-of-the-art research ( Walker & Morrissey, 2012 ).…”

Section: Discussion: Overcoming Challengesmentioning

confidence: 99%

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research

Blanchard¹,

Hiratsuka²,

Beans³

et al. 2020

Collaborations: A Journal of Community-Based Research and Practice

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Persistent, unresolved issues stemming from a legacy of scientific exploitation and bio-colonialism have kept many tribal nations from participating in genomic research. The Center for the Ethics of Indigenous Genomic Research (CEIGR) aims to model meaningful community engagement that moves toward more inclusive and equitable research practices related to genomics. This article reflects on key successes and challenges behind CEIGR's efforts to shape Ethical, Legal and Social Implications (ELSI) research in ways that are informed by Indigenous perspectives, to locate community partnerships at the center of genomics research, and to conduct normative and empirical research with Indigenous communities that is grounded in the concepts of reciprocity, transparency and cultural competency. The structure of CEIGR represents an important shift away from a traditional model centered on a university-based principal investigators toward a partner-centered research approach that emphasizes equity and community control by distributing power and decision-making across all CEIGR partner sites. We discuss three features of CEIGR that have contributed to this shift towards an equitable, community-driven partnership: 1) balancing local priorities with collective goals; 2) distributing power in ways that promote equitable partnerships; and 3) capacity building and co-learning across partner sites. The discussion of these three areas in this article speaks to a particular strength of our Center: the interdependence among partners and collective willingness to maintain a plasticity of leadership that creates space for all of our partners to lead, support, exchange and strengthen ELSI research.

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Section: Discussion: Overcoming Challengesmentioning

confidence: 99%

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research

Blanchard¹,

Hiratsuka²,

Beans³

et al. 2020

Collaborations: A Journal of Community-Based Research and Practice

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“…In this context, ELSI research can make an important contribution to identifying problems and barriers already in the development process and to developing solution strategies for the further course of the project. (Goldenberg et al, 2019;Parker et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

Social, Legal and Economic Implications for the Implementation of an Intelligent Wound Plaster in Outpatient Care

Enste

Kucharski

2021

Front. Polit. Sci.

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Background: The care of chronic wounds is one of the core tasks of inpatient and outpatient care. The correct timing of changes has a significant impact on the positive course of wound healing. The VulnusMON project developed an intelligent wound plaster to determine the optimum time to change the plaster in hospital. Against the background of implementing the solution also in the outpatient sector, this article focuses on the following research questions: What is the legal framework for wound care in outpatient care? What are the differences in wound care between inpatient and outpatient care? What obstacles and barriers arise for the VulnusMON project when it is implemented in the outpatient sector? Can initial economic estimates be made for the transfer to the outpatient sector?Method: Due to the complexity of the different research questions, a mixed method design was used. The qualitative part of the study includes both focus groups and expert interviews. As part of the quantitative analysis, a data set on outpatient wound care was analyzed (n = 463).Results: In summary, it can be stated that the project VulnusMON and its intelligent wound plaster, which aims to determine the ideal time to change a wound plaster is viewed very positively by the professionals. However, there are a number of barriers that inhibit the potential transfer of the new digital solution to the outpatient setting. From an economic point of view, implementation in the outpatient sector makes sense, as travel times can be reduced. However, the study also points out important social implications, that pose several challenges for the actual transfer of the plaster to the outpatient sector.

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“…In the light of any rapidly evolving biomedical scientific field, but particularly PM, there is an ethical duty to consider the implementation impacts of those technologies upon patients, their families, and society as a whole. 25 The NHGRI ELSI portfolio has expanded since its initial funding and now spans multiple domains, including the implementation of genetic/genomic tests into health care settings and health systems so as to ensure fair access, use, and reimbursement. 26 In accordance with these stated priorities, a scoping review was conducted with the following research question: ''what are the current trends in U.S. genetic test use, genetics/genomics healthcare workforce education and training, and available clinical translation tools for healthcare systems?''…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Educational and Ethical Considerations for Genetic Test Implementation Within Health Care Systems

Kurnat-Thoma

2020

Network and Systems Medicine

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Introduction: The precision medicine (PM) era presents unprecedented proliferation of genetic/genomic initiatives, information, and bioinformatic tools to enhance targeted molecular diagnosis and therapeutic treatments. As of February 29, 2020, the National Institutes of Health (NIH) National Center for Biotechnology Information (NCBI) Genetic Testing Registry contained 64,860 genetic tests for 12,268 conditions and 18,686 genes from 560 laboratories, and the Food and Drug Administration had 404 entries for pharmacogeneomic biomarkers used in drug labeling. Population-based research initiatives including NIH's All of Us and Veterans Affairs' Million Veteran Program, and the UK Biobank, combine use of genomic biorepositories with electronic medical records (i.e., National Human Genome Research Institute's [NHGRI's] electronic Medical Records and Genomics [eMERGE] Network). Learning health care systems are implementing clinical genomics screening programs and precision oncology programs. However, there are insufficient medical geneticists, nurse geneticists, and genetics counselors to implement expanding number of clinical genetic tests that are required for PM implementation. Methods: A scoping review of current (2014-2019) trends in U.S. genomic medicine translation, PM health care provider workforce education and training resources, and genomic clinical decision support (CDS) implementation tools was conducted. Results: Health care delivery institutions and systems are beginning to implement genetic tests that are driving PM, particularly in the areas of oncology, pharmacogenetics, obstetrics, and prenatal diagnostics. To ensure safe adoption and clinical translation of PM, health care systems have an ethical responsibility to ensure their providers and front-line staff are adequately prepared to order, use, and interpret genetic test information. Conclusion: There are a number of high-quality evidenced-based educational resources and CDS tools available. Strong partnerships between health care system leaders, front-line providers and staff coupled with reasonable goal setting can help drive PM translation interests.

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Normative and conceptual ELSI research: what it is, and why it’s important

Cited by 23 publications

References 25 publications

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research

Social, Legal and Economic Implications for the Implementation of an Intelligent Wound Plaster in Outpatient Care

Educational and Ethical Considerations for Genetic Test Implementation Within Health Care Systems

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