Data Medicine: ‘Broad’ or ‘Dynamic’ Consent?

Stoeklé, Henri‐Corto; Hulier-Ammar, Elisabeth; Hervé, Christian

doi:10.1093/phe/phac014

Cited by 3 publications

(3 citation statements)

References 26 publications

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“…At the individual level, this would improve the identification and evaluation of the dangers and risks of these technologies, and at societal level, it would improve their use, both by patients, and by physicians and biologists. We see dynamic consent as a pertinent way of improving patient education and literacy [ 16 ]. Modern healthcare administrators and executives in hospitals and research institutes would have a key role to play in this process.…”

Section: Perspectivesmentioning

confidence: 99%

Good practice in medicine and biology: scientific integrity needs global bioethics

2023

Self Cite

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We consider scientific integrity to constitute a new theory of morality of science, in a very specific deontological sense. Indeed, at least in practice, scientific integrity extends beyond scientific concerns, seeking to develop specific moral duties and/or procedures based on general moral values and/or standards, leading to common moral frameworks for usual scientific practices. This is, of course, necessary. Contemporary history has shown us only too well that usual scientific practices need common moral frameworks, especially in medicine and biology. However, like scientific practices, and medical and biological practices in particular, the persistence of certain moral values and/or standards and the priority attributed to them, can change significantly, due to changes in society, people, the times and/or environments, and they may be under strong tension. We therefore believe that a new theory of ethics of science, in a very specific teleological sense, may be required in this case, particularly in medicine and biology, in addition to scientific integrity. This ethical theory, through research, professionals and structures in ethics of science also called medical ethics, research ethics or bioethics in the fields of medicine and biology, should seek to identify and find specific ethical solutions to these tensions, applicable at a particular place and time, based on common ethical purposes and/or consequences. As a result, these specific ethical solutions may, or may not, lead to an evolution of common moral frameworks, which may, or may not, be developed on the basis of scientific integrity. In the fields of medicine and biology, this ethical theory is closely related to another theory, global bioethics, but with a number of new conceptual and methodological developments.

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Section: Perspectivesmentioning

confidence: 99%

Good practice in medicine and biology: scientific integrity needs global bioethics

2023

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“…Privacy-preserving innovations include ways to “share” data without movement from protected systems using approaches like federated analyses, data sandboxes, or synthetic data. In addition to exploring privacy-preserving approaches to data sharing, countries and health systems may need to consider broad and dynamic approaches to consent 11 , 12 . As we look to a future where a patient may have thousands of algorithms churning away at their data, efforts to improve data quality and sharing should include enabling patients’ access to and engagement with their own data to encourage them to actively partner in their health and provide transparency on how their data are being used to improve health care.…”

Section: Introductionmentioning

confidence: 99%

The potential for artificial intelligence to transform healthcare: perspectives from international health leaders

Silcox,

Zimlichmann,

Huber

et al. 2024

npj Digit. Med.

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Artificial intelligence (AI) has the potential to transform care delivery by improving health outcomes, patient safety, and the affordability and accessibility of high-quality care. AI will be critical to building an infrastructure capable of caring for an increasingly aging population, utilizing an ever-increasing knowledge of disease and options for precision treatments, and combatting workforce shortages and burnout of medical professionals. However, we are not currently on track to create this future. This is in part because the health data needed to train, test, use, and surveil these tools are generally neither standardized nor accessible. There is also universal concern about the ability to monitor health AI tools for changes in performance as they are implemented in new places, used with diverse populations, and over time as health data may change. The Future of Health (FOH), an international community of senior health care leaders, collaborated with the Duke-Margolis Institute for Health Policy to conduct a literature review, expert convening, and consensus-building exercise around this topic. This commentary summarizes the four priority action areas and recommendations for health care organizations and policymakers across the globe that FOH members identified as important for fully realizing AI’s potential in health care: improving data quality to power AI, building infrastructure to encourage efficient and trustworthy development and evaluations, sharing data for better AI, and providing incentives to accelerate the progress and impact of AI.

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“… 14 , 15 This is slightly different from broad consent, which means consenting to a framework of future research subjected to limited predefined restrictions. 16 , 17 Hence, given the active clinical research agenda in country and the importance of having a robust consenting model for big-data clinical research, the current study explores Jordan’s public views toward providing blanket consent for use of biospecimens and health records, aiming to overcome barriers and enhance positive attitudes toward providing the same.…”

Section: Introductionmentioning

confidence: 99%

Attitudes Toward Providing Open Access for Use of Biospecimens and Health Records: A Cross-Sectional Study from Jordan

Al-Shami¹,

Ahmed²,

Alzoubi³

2023

PPA

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Purpose Biospecimen repositories and big data generated from clinical research are critically important in advancing patient-centered healthcare. However, ethical considerations arising from reusing clinical samples and health records for subsequent research pose a hurdle for big-data health research. This study aims to assess the public’s opinions in Jordan toward providing blanket consent for using biospecimens and health records in research. Participants and Methods A cross-sectional study utilizing a self-reported questionnaire was carried out in different cities in Jordan, targeting adult participants. Outcome variables included awareness of clinical research, participation in clinical research, and opinions toward providing open access to clinical samples and records for research purposes. Descriptive analysis was utilized for reporting the outcome as frequency (percentages) out of the total responses. Univariate and multivariate logistic regression were used to investigate the association between independent variables and the outcome of interest. Results A total of 1033 eligible participants completed the questionnaire. Although the majority (90%) were aware of clinical research, only 24% have ever participated in this type of research. About half (51%) agreed on providing blanket consent for the use of clinical samples, while a lower percentage (43%) agreed on providing open access to their health records. Privacy concerns and lack of trust in the researcher were cited as major barriers to providing blanket consent. Participation in clinical research and having health insurance were predictors for providing open access to clinical samples and records. Conclusion The lack of public trust in Jordan toward data privacy is evident from this study. Therefore, a governance framework is needed to raise and maintain the public’s trust in big-data research that warrants the future reuse of clinical samples and records. As such, the current study provides valuable insights that will inform the design of effective consent protocols required in data-intensive health research.

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Data Medicine: ‘Broad’ or ‘Dynamic’ Consent?

Cited by 3 publications

References 26 publications

Good practice in medicine and biology: scientific integrity needs global bioethics

Good practice in medicine and biology: scientific integrity needs global bioethics

The potential for artificial intelligence to transform healthcare: perspectives from international health leaders

Attitudes Toward Providing Open Access for Use of Biospecimens and Health Records: A Cross-Sectional Study from Jordan

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