Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Jun;32(6):3839-3845.
doi: 10.1007/s00330-021-08474-9. Epub 2022 Jan 12.

Impact of incidental findings on young adult participants in brain imaging research: an interview study

Anke J M Oerlemans  1 , Daniëlle M H Barendregt  2 , Sabine C Kooijman  3 , Eline M Bunnik  4
Affiliations

Impact of incidental findings on young adult participants in brain imaging research: an interview study

Anke J M Oerlemans et al. Eur Radiol. 2022 Jun.

Abstract

Objectives: The current study aims to investigate young adult research participants' experiences with and preferences regarding the disclosure of MRI incidental findings (IFs) in brain imaging research, and to elucidate the impact and long-term effects of IF disclosure on these participants.

Methods: We conducted 11 semi-structured interviews with 10 research participants to whom an IF was disclosed after they participated in brain MRI research at the Donders Institute, Centre for Cognitive Neuroimaging (DCCN) in the Netherlands. Interview transcripts were analyzed using the constant comparative method.

Results: The analysis yielded five themes regarding the impact of IF disclosure: the initial shock of disclosure, a period of uncertainty, results of the follow-up examination, long-term impact, and participants' biomedical background. Participants were primarily impacted by the uncertainty in the period immediately following IF disclosure. For our participants, disclosure has had no health benefits and some, albeit mostly temporary and limited, negative impact.

Conclusions: Our study suggests that it is important to carefully consider IF disclosure in a population of young healthy participants and emphasizes the relevance of systematic, large-scale follow-up studies to monitor risks and benefits of IF disclosure in this population. The insights from this study can be of added value to improve current research procedures or frameworks for the management and disclosure of IFs in imaging studies.

Key points: • Participants were primarily impacted by the uncertainty in the period immediately following IF disclosure. • Our study suggests that it is important to carefully consider IF disclosure in a population of healthy young adult participants. • Our study emphasizes the relevance of systematic, large-scale follow-up studies to monitor the risks and benefits of IF disclosure in this population.

Keywords: Disclosure; Incidental findings; Neuroimaging; Qualitative research; Research ethics.

PubMed Disclaimer

Comment in

Similar articles

See all similar articles

Cited by

References

    1. Illes J (2003) Neuroethics in a new era of neuroimaging. AJNR Am J Neuroradiol 24:1739–1741
    1. Bomhof CHC, van Bodegom L, Vernooij MW, Pinxten W, de Beaufort ID, Bunnik EM (2020) The impact of incidental findings detected during brain imaging on research participants of the Rotterdam Study: an interview study. Camb Q Healthc Ethics 29:542–556 - DOI
    1. Morris Z, Whiteley WN, Longstreth WT Jr et al (2009) Incidental findings on brain magnetic resonance imaging: systematic review and meta-analysis. BMJ 339:b3016 - DOI
    1. Ikram MA, van der Lugt A, Niessen WJ et al (2015) The Rotterdam scan study: design update 2016 and main findings. Eur J Epidemiol 30:1299–1315 - DOI
    1. Poldrack RA, Farah MJ (2015) Progress and challenges in probing the human brain. Nature 526:371–379 - DOI

LinkOut - more resources