An Examination of Emerging Bioethical Issues in Biomedical Research Proceedings of a Workshop (2020) / Chapter Skim
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6 Reflecting on the Workshop and Looking to the Future
6 Reflecting on the Workshop and Looking to the Future
Pages 79-90
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From page 79... ...
EVOLVING TECHNOLOGIES, RESEARCH MODELS, AND COLLABORATIONS Ethically Leveraging Digital Technology and Machine Learning for Health From the information presented, it is clear that the use of digital health technologies, artificial intelligence (AI) , and machine learning in bio edical m research and clinical care are placing enormous pressure on current privacy, ethics, and regulatory frameworks, Simoncelli said, and one theme that emerged from the workshop was an urgent call for a new system of data sharing and governance.
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From page 80... ...
(Roberts) • Identifying successful models of integrating bioethics research into multi disciplinary studies.
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• Training those who work in data-intensive sciences and the associated support staff on their roles in the ethical management of data, including safeguarding data privacy. (Castle)
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From page 82... ...
In the interim, Simoncelli said, there is an opportunity to begin mapping out an oversight framework, and perhaps one area where funders could play a role would be to help fund the research that would lay the groundwork for such a framework. New Collaborations Across Disciplines, Institutions, and Stakeholders Simoncelli noted that another key theme that had surfaced throughout the day is that one challenge to developing new rules, standards, and solutions to address the ethics issues surrounding the use of digital technologies, AI, and machine learning in health is that none of the stakeholders involved has the full complement of expertise required.
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From page 83... ...
A question that needs to be asked is whether that is a burden they should have to take on and, if so, how the professional research enterprise might support their efforts. Hiratsuka discussed the role of community leaders in defining the research questions to be asked, the principles of respect and reciprocity that must be adhered to when asking research questions, and what benefit and harm mean in the context of their community.
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From page 84... ...
Based on the scope of the workshop discussions, he suggested that the disciplines of sociology, the history of medicine, critical medical humanities, science and technology studies, and literary theory are also necessary. Bioethics as a field includes disciplines that NIH has classically not funded, and O'Connor highlighted the need to look at the structures of grant making and ensure that the decision makers are diverse and have the disciplinary backgrounds needed to meet the interdisciplinary challenges of bioethics.
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From page 85... ...
Another reason is that social scientists are used to working with other social scientists and humanities researchers, and the idea of conducting integrated, interdisciplinary work with natural scientists or clinical scientists is challenging, especially for early-career researchers who are trying to establish themselves within the conventions of their particular disciplines. DISCUSSION Taking on the Burdens of Self Science There is a collective action problem among citizens and patients, suggested Maria Merritt of Johns Hopkins University.
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Another area where patients are taking on an increasing burden is rare disease research. More and more, rare disease communities are building the research-enabling infrastructure needed to attract researchers and to accelerate research on rare diseases that have been neglected by traditional academic research.
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At Wellcome Trust, O'Connor said, the funding strategy within the humanities and social sciences and the disciplines that make up the broad field of bioethics is to determine what the organization excels at that can add value for finding solutions. For example, Wellcome Trust funds literary studies, which O'Connor said can add to the understanding of how people and communities experience illness.
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From page 88... ...
Wilfond noted that the National Center for Advancing Translational Sciences' Clinical and Translational Science Awards Program originally required institutions to have an ethics component as part of their awards. Although this is no longer a requirement, he said that an element that has been sustained consists of the institutional research ethics consultation services, which he said offer support to investigators who do not have embedded ethicists in their programs.
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From page 89... ...
Ethical issues that researchers might face include, for example, structural bias in the data; unintended consequences of algorithm development use; the potential for dual use of algorithms, applying data from one domain to another domain it was not intended for (e.g., applying AI to data for law enforcement purposes) ; or using data from social media for behavioral modeling that is then used to fundamentally change people's choice architectures.
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