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. 2024;52(4):805-815.
doi: 10.1017/jme.2024.169. Epub 2025 Jan 31.

Far from Home: Managing Incidental Findings in Field Research with Portable MRI

Susan M Wolf  1 , Judy Illes  2
Affiliations

Far from Home: Managing Incidental Findings in Field Research with Portable MRI

Susan M Wolf et al. J Law Med Ethics. 2024.

Abstract

Portable MRI for neuroimaging research in remote field settings can reach populations previously excluded from research, including communities underrepresented in current brain neuroscience databases and marginalized in health care. However, research conducted far from a medical institution and potentially in populations facing barriers to health care access raises the question of how to manage incidental findings (IFs) that may warrant clinical workup. Researchers should not withhold information about IFs from historically excluded and underserved population when members consent to receive it, and instead should facilitate access to information and a pathway to clinical care.

Keywords: Field Research; Incidental Findings; Neuroimaging; Portable MRI; Research Ethics; Underserved Populations.

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    1. The authors recognize their positionality as urban academic scholars who have participated in past research projects involving participants from traditionally underserved communities that are underrepresented in neuroscience databases, but who are not themselves members of those communities. Recommendations in this chapter are intended to offer initial guidance on managing the challenges that relate to IFs and the questions that any researcher-community team should jointly ask and resolve before embarking on a study in a rural or remote area.
    1. For discussion of the concept of actionability in return of results and IFs, see, e.g., Wolf S.M. and Green R.C., “Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal,” Annual Review of Genomics and Human Genetics 24 (2023): 393–414; J. Illes et al., “Working Group on Incidental Findings in Brain Imaging Research. Ethics: Incidental Findings in Brain Imaging Research,” Science 311, no. 5762 (2006): 783–784; J. Illes et al., “Practical Approaches to Incidental Findings in Brain Imaging Research,” Neurology 70, no. 5 (2008): 384–390. Not all guidelines limit return of IFs to those deemed clinically actionable. See Wolf and Green, supra.
    1. See Ortiz-Osorno A., Ehler L.A., and Brooks J., “Considering Actionability at the Participant’s Research Setting Level for Anticipatable Incidental Findings from Clinical Research,” Journal of Law, Medicine & Ethics 43, no. 3 (2015): 619–632; C.E. McMahon et al., “Interrogating the Value of Return of Results for Diverse Populations: Perspectives from Precision Medicine Researchers,” AJOB Empirical Bioethics 15, no. 2 (2024): 108–119, at 117. The authors of the latter article report empirical analysis of researcher perspectives, but their discussion section then concludes, “Failing to account for the structural inequities in diverse populations’ ability to access, apprehend, and act on [return of results] raises fundamental concerns about the approach to, and depth of, PMR’s commitment to diversity and inclusion. Moreover, such over-promise may further erode trust….” They urge looking for alternatives to return of results. - PubMed
    1. See, e.g., Sullivan H.K. and Berkman B.E., “Incidental Findings in Low-Resource Settings,” Hastings Center Report 48, no. 3 (2018): 20–28; C.A. Stewart et al., “Pragmatic Clinical Trial-Collateral Findings: Recognizing the Needs of Low-Resource Research Participants,” American Journal of Bioethics 20, no. 1 (2020): 19–21; M.B. Raymond et al., “Practices and Attitudes Toward Returning Genomic Research Results to Low-Resource Research Participants,” Public Health Genomics 24, no. 5–6 (2021): 241–252. A substantial literature discusses duties of ancillary care and researcher responsibilities to return results and IFs in resource-challenged international settings. See, e.g., H.S. Richardson and L. Belsky, “The Ancillary-Care Responsibilities of Medical Researchers: An Ethical Framework for Thinking about the Clinical Care that Researchers Owe Their Subjects,” Hastings Center Report 34, no. 1 (2004): 25–33; D. Ralefala et al., “Do Solidarity and Reciprocity Obligations Compel African Researchers to Feedback Individual Genetic Results in Genomics Research?” BMC Medical Ethics 21, no. 1 (2020): 1–11. - PMC - PubMed
    1. The distinction between secondary findings and incidental findings has been much debated in the context of genomic research, where the usual contrast drawn is between a predetermined list of genes and variants to be ascertained versus unexpected findings. See Wolf and Green, supra note 2. In large-scale genomic sequencing studies, a secondary findings list can circumscribe what can otherwise be a wide field of potential IFs. However, this distinction between secondary findings and IFs has garnered less attention in imaging research, where the scan itself limits the field of findings to be interpreted and radiologist conventions for reporting observed pathology are well established.