Ethical Imperatives for Working With Diverse Populations in Digital Research

doi:10.2196/47884

. 2023 Sep 18:25:e47884.

doi: 10.2196/47884.

Ethical Imperatives for Working With Diverse Populations in Digital Research

Jonathan Herington¹, Kay Connelly^{2

3}, Judy Illes⁴

Affiliations

¹ Department of Health Humanities and Bioethics, University of Rochester, Rochester, NY, United States.
² Department of Informatics, Indiana University, Bloomington, IN, United States.
³ College of Engineering, Michigan State University, Lansing, MI, United States.
⁴ Neuroethics Canada, Division of Neurology, Department of Medicine, University of British Columbia, Vancouver, BC, Canada.

PMID: 37721792
PMCID: PMC10546274
DOI: 10.2196/47884

Ethical Imperatives for Working With Diverse Populations in Digital Research

Jonathan Herington et al. J Med Internet Res. 2023.

. 2023 Sep 18:25:e47884.

doi: 10.2196/47884.

Authors

Jonathan Herington¹, Kay Connelly^{2

3}, Judy Illes⁴

Affiliations

¹ Department of Health Humanities and Bioethics, University of Rochester, Rochester, NY, United States.
² Department of Informatics, Indiana University, Bloomington, IN, United States.
³ College of Engineering, Michigan State University, Lansing, MI, United States.
⁴ Neuroethics Canada, Division of Neurology, Department of Medicine, University of British Columbia, Vancouver, BC, Canada.

PMID: 37721792
PMCID: PMC10546274
DOI: 10.2196/47884

Abstract

Digital research methodologies are driving a revolution in health technology but do not yet fully engage diverse and historically underrepresented populations. In this paper, we explore the ethical imperative for such engagement alongside accompanying challenges related to recruitment, appreciation of risk, and confidentiality, among others. We critically analyze existing research ethics frameworks and find that their reliance on individualistic and autonomy-focused models of research ethics does not offer adequate protection in the context of the diversity imperative. To meet the requirements of justice and inclusivity in digital research, methods will benefit from a reorientation toward more participatory practices.

Keywords: digital health research; diversity; engagement; justice; participatory; research ethics; research participants.

©Jonathan Herington, Kay Connelly, Judy Illes. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 18.09.2023.

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Conflict of interest statement

Conflicts of Interest: None declared.

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References

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[1] Eaneff S, Obermeyer Z, Butte Aj. The case for algorithmic stewardship for artificial intelligence and machine learning technologies. JAMA. 2020;324(14):1397–1398. doi: 10.1001/jama.2020.9371.2770772 - DOI - PubMed

[2] Eaneff S, Obermeyer Z, Butte Aj. The case for algorithmic stewardship for artificial intelligence and machine learning technologies. JAMA. 2020;324(14):1397–1398. doi: 10.1001/jama.2020.9371.2770772 - DOI - PubMed

[3] Obermeyer Z, Powers B, Vogeli C, Mullainathan S. Dissecting racial bias in an algorithm used to manage the health of populations. Science. 2019;366(6464):447–453. doi: 10.1126/science.aax2342. https://www.science.org/doi/10.1126/science.aax2342 366/6464/447 - DOI - DOI - PubMed

[4] Obermeyer Z, Powers B, Vogeli C, Mullainathan S. Dissecting racial bias in an algorithm used to manage the health of populations. Science. 2019;366(6464):447–453. doi: 10.1126/science.aax2342. https://www.science.org/doi/10.1126/science.aax2342 366/6464/447 - DOI - DOI - PubMed

[5] Sounderajah V, McCradden MD, Liu X, Rose S, Ashrafian H, Collins GS, Anderson J, Bossuyt PM, Moher D, Darzi A. Ethics methods are required as part of reporting guidelines for artificial intelligence in healthcare. Nat Mach Intell. 2022;4(4):316–317. doi: 10.1038/s42256-022-00479-3. - DOI

[6] Sounderajah V, McCradden MD, Liu X, Rose S, Ashrafian H, Collins GS, Anderson J, Bossuyt PM, Moher D, Darzi A. Ethics methods are required as part of reporting guidelines for artificial intelligence in healthcare. Nat Mach Intell. 2022;4(4):316–317. doi: 10.1038/s42256-022-00479-3. - DOI

[7] Tindale LC, Chiu D, Minielly N, Hrincu V, Talhouk A, Illes J. Wearable biosensors in the workplace: perceptions and perspectives. Front Digit Health. 2022;4:800367. doi: 10.3389/fdgth.2022.800367. https://www.frontiersin.org/articles/10.3389/fdgth.2022.800367/full - DOI - DOI - PMC - PubMed

[8] Tindale LC, Chiu D, Minielly N, Hrincu V, Talhouk A, Illes J. Wearable biosensors in the workplace: perceptions and perspectives. Front Digit Health. 2022;4:800367. doi: 10.3389/fdgth.2022.800367. https://www.frontiersin.org/articles/10.3389/fdgth.2022.800367/full - DOI - DOI - PMC - PubMed

[9] Claw KG, Anderson MZ, Begay RL, Tsosie KS, Fox K, Garrison NA, Summer internship for INdigenous peoples in Genomics (SING) Consortium A framework for enhancing ethical genomic research with Indigenous communities. Nat Commun. 2018;9(1):2957. doi: 10.1038/s41467-018-05188-3. https://www.nature.com/articles/s41467-018-05188-3 10.1038/s41467-018-05188-3 - DOI - PMC - PubMed

[10] Claw KG, Anderson MZ, Begay RL, Tsosie KS, Fox K, Garrison NA, Summer internship for INdigenous peoples in Genomics (SING) Consortium A framework for enhancing ethical genomic research with Indigenous communities. Nat Commun. 2018;9(1):2957. doi: 10.1038/s41467-018-05188-3. https://www.nature.com/articles/s41467-018-05188-3 10.1038/s41467-018-05188-3 - DOI - PMC - PubMed

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Ethical Imperatives for Working With Diverse Populations in Digital Research

Affiliations

Ethical Imperatives for Working With Diverse Populations in Digital Research

Authors

Affiliations

Abstract

Conflict of interest statement

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