Communicating results in post-Belmont era biomonitoring studies: lessons from genetics and neuroimaging research

Rachel Morello-Frosch; Julia Varshavsky; Max Liboiron; Phil Brown; Julia G Brody

doi:10.1016/j.envres.2014.10.001

Communicating results in post-Belmont era biomonitoring studies: lessons from genetics and neuroimaging research

Environ Res. 2015 Jan:136:363-72. doi: 10.1016/j.envres.2014.10.001. Epub 2014 Nov 25.

Authors

Rachel Morello-Frosch¹, Julia Varshavsky², Max Liboiron³, Phil Brown⁴, Julia G Brody⁵

Affiliations

¹ University of California Berkeley, School of Public Health and Department of Environmental Science, Policy and Management, 130 Mulford Hall, Berkeley, CA 94720-3114, USA. Electronic address: rmf@berkeley.edu.
² University of California Berkeley, School of Public Health, 50 University Hall, #7360, Berkeley, CA 94720-7360, USA. Electronic address: juliav@berkeley.edu.
³ Memorial University of Newfoundland and Labrador, Department of Sociology, St. John's, NL, Canada A1C 5S7. Electronic address: mliboiron@mun.ca.
⁴ Northeastern University, Social Science Environmental Health Research Institute, Department of Sociology and Anthropology and Department of Health Sciences, 360 Huntington Avenue, 500 Holmes Hall, Boston, MA 02115, USA. Electronic address: p.brown@neu.edu.
⁵ Silent Spring Institute, 29 Crafts St, Newton, MA 02458, USA. Electronic address: brody@silentspring.org.

Abstract

Background: Biomonitoring is a critical tool to assess the effects of chemicals on health, as scientists seek to better characterize life-course exposures from diverse environments. This trend, coupled with increased institutional support for community-engaged environmental health research, challenge established ethical norms related to biomonitoring results communication and data sharing between scientists, study participants, and their wider communities.

Methods: Through a literature review, participant observation at workshops, and interviews, we examine ethical tensions related to reporting individual data from chemical biomonitoring studies by drawing relevant lessons from the genetics and neuroimaging fields.

Results: In all three fields ethical debates about whether/how to report-back results to study participants are precipitated by two trends. First, changes in analytical methods have made more data accessible to stakeholders. For biomonitoring, improved techniques enable detection of more chemicals at lower levels, and diverse groups of scientists and health advocates now conduct exposure studies. Similarly, innovations in genetics have catalyzed large-scale projects and broadened the scope of who has access to genetic information. Second, increasing public interest in personal medical information has compelled imaging researchers to address demands by participants to know their personal data, despite uncertainties about their clinical significance. Four ethical arenas relevant to biomonitoring results communication emerged from our review: tensions between participants' right-to-know their personal results versus their ability or right-to-act to protect their health; whether and how to report incidental findings; informed consent in biobanking; and open-access data sharing.

Conclusion: Ethically engaging participants in biomonitoring studies requires consideration of several issues, including scientific uncertainty about health implications and exposure sources, the ability of participants to follow up on potentially problematic results, tensions between individual and community research protections, governance and consent regarding secondary use of tissue samples, and privacy challenges in open access data sharing.

Keywords: Bioethics; Biomonitoring; Informed consent; Risk communication.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Review

MeSH terms

Environmental Health
Environmental Monitoring / methods*
Humans
Neuroimaging

Abstract

Publication types

MeSH terms

Grants and funding