Abstract
Biomonitoring and personal exposure assessments – measurements in people’s blood, urine, breast milk, and other tissues, or in household dust, air, or other personal space – are vital tools for scientists to discover and monitor the links between environmental chemicals and health. For participants who contribute their samples, these methods generate curiosity: What did you find, was it safe, and what should I do? These motivating questions make the process of reporting back to study participants and communities a powerful opportunity to improve environmental health literacy. Decisions about what to report can be challenging, though, because scientists may not yet fully understand how the chemicals affect health, where they come from, or how to reduce exposures. This chapter explores the ethical foundations, evidence-based methods, and outcomes in environmental health studies that reported results for emerging contaminants.
Decisions about what and how to report back are guided by human research ethics and knowledge from social science and communications research. Report-back balances the Belmont Report values to avoid harm, maximize benefit, and support the autonomy of study participants, and it goes farther, to support the principles of community-based participatory research, including co-ownership of data, community problem-solving, and shared knowledge as an avenue to shared power and democratizing science. Research about environmental disasters, embodied health movements, and risk communication can guide development of ethical and effective report-back models.
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References
[Anonymous]. (2011). Communicating individual-level results to participant families. In Breast Cancer and the environment research program annual meeting. Cincinnati.
Adams, C., Brown, P., Morello-Frosch, R., Brody, J. G., Rudel, R., Zota, A., et al. (2011). Disentangling the exposure experience: The roles of community context and report-back of environmental exposure data. Journal of Health and Social Behavior, 52(2), 180–196.
Altman, R. G., Morello-Frosch, R., Brody, J. G., Rudel, R., Brown, P., & Averick, M. (2008). Pollution comes home and gets personal: women's experience of household chemical exposure. Journal of Health and Social Behavior, 49(4), 417–435.
Barlow, J., & Kushi, L. (2011, November 16). Communicating individual-level research results to participant families. In Proceedings of the BCERP annual meeting. Cincinnati.
Becker, K., Seiwert, M., Casteleyn, L., Joas, R., Joas, A., Biot, P., et al. (2014). A systematic approach for designing a HBM pilot study for Europe. International Journal of Hygiene and Environmental Health, 217(2–3), 312–322.
Bennett, D., Bellinger, D. C., Birnbaum, L. S., Bradman, A., Chen, A., Cory-Slechta, D. A., et al. (2016). Project TENDR: Targeting environmental neuro-developmental risks the TENDR consensus statement. Environmental Health Perspectives, 124(7), A118–A122.
Boronow, K. E., Susmann, H. P., Gajos, K. Z., Rudel, R. A., Arnold, K. C., Brown, P., et al. (2017). DERBI: A digital method to help researchers offer “right-to-know” personal exposure results. Environmental Health Perspectives, 125(2), A27–A33.
Brody, J. G., Aschengrau, A., McKelvey, W., Rudel, R. A., Swartz, C. H., & Kennedy, T. (2004). Breast cancer risk and historical exposure to pesticides from wide-area applications assessed with GIS. Environmental Health Perspectives, 112(8), 889.
Brody, J. G., Tickner, J., & Rudel, R. A. (2005). Community-initiated breast cancer and environment studies and the precautionary principle. Environmental Health Perspectives, 113(8), 920.
Brody, J. G., Morello-Frosch, R., Brown, P., Rudel, R. A., Altman, R. G., Frye, M., et al. (2007). Improving disclosure and consent: “Is it safe?”: New ethics for reporting personal exposures to environmental chemicals. American Journal of Public Health, 97(9), 1547–1554.
Brody, J. G., Morello-Frosch, R., Zota, A., Brown, P., Perez, C., & Rudel, R. A. (2009). Linking exposure assessment science with policy objectives for environmental justice and breast cancer advocacy: The northern California household exposure study. American Journal of Public Health, 99(Suppl 3), S600–S609.
Brody, J. G., Dunagan, S. C., Morello-Frosch, R., Brown, P., Patton, S., & Rudel, R. A. (2014). Reporting individual results for biomonitoring and environmental exposures: Lessons learned from environmental communication case studies. Environmental Health, 13, 40.
Brown, P. (2007). Toxic exposures: Contested illnesses and the environmental health movement. New York: Columbia University Press.
Brown, P., & Mikkelsen, E. J. (1997). No safe place: Toxic waste, leukemia, and community action. Berkeley: University of California Press.
Brown, P., Morello-Frosch, R., Brody, J. G., Altman, R. G., Rudel, R. A., Senier, L., et al. (2010). Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: A case study. Environmental Health, 9, 39.
Brown, P., Brody, J. G., Morello-Frosch, R., Tovar, J., Zota, A. R., & Rudel, R. A. (2012). Measuring the success of community science: The northern California household exposure study. Environmental Health Perspectives, 120(3), 326.
Brown-Williams, H., Graham, C., & Oliver, M. (2009). Report on CYGNET study focus groups: Communicating results to study participants. Berkeley: Health Research to Action, University of California, Berkeley School of Public Health.
Cordner, A., Mulcahy, M., & Brown, P. (2013). Chemical regulation on fire: Rapid policy advances on flame retardants. Environmental Science & Technology, 47(13), 7067–7076.
Day, B., Langlois, R., Tremblay, M., & Knoppers, B. M. (2007). Canadian health measures survey: Ethical, legal and social issues. Health Reports, 18(Suppl), 37–51.
Delbanco, T., Walker, J., Darer, J. D., et al. (2010). Open notes: Doctors and patients signing on. Annals of Internal Medicine, 153(2), 121–125.
Department of Health Education and Welfare. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Federal Register, 44(76), 23192–23197.
Di Renzo, G. C., Conry, J. A., Blake, J., DeFrancesco, M. S., DeNicola, N., Martin, J. N., et al. (2015). International Federation of Gynecology and Obstetrics opinion on reproductive health impacts of exposure to toxic environmental chemicals. International Journal of Gynaecology and Obstetrics, 131(3), 219–225.
Dodson, R. E., Nishioka, M., Standley, L. J., Perovich, L. J., Brody, J. G., & Rudel, R. A. (2012a). Endocrine disruptors and asthma-associated chemicals in consumer products. Environmental Health Perspectives, 120(7), 935–943.
Dodson, R. E., Perovich, L. J., Covaci, A., Van den Eede, N., Ionas, A. C., Dirtu, A. C., et al. (2012b). After the PBDE phase-out: A broad suite of flame retardants in repeat house dust samples from California. Environmental Science & Technology, 46(24), 13056–13066.
Dunagan, S., Brody, J., Morello-Frosch, R., Brown, P., Goho, S., Tovar, J., et al. (2013). When pollution is personal: Handbook for reporting results to participants in biomonitoring and personal exposure studies. Newton: Silent Spring Institute.
Edelstein, M. R. (2004). Contaminated communities: Coping with residential toxic exposure. Boulder: Westview Press.
Emmett, E. A., Zhang, H., Shofer, F. S., Rodway, N., Desai, C., Freeman, D., et al. (2009). Development and successful application of a “community-first” communication model for community-based environmental health research. Journal of Occupational and Environmental Medicine, 51(2), 146–156.
Few, S. (2004). Show me the numbers: Designing tables and graphs to enlighten. Oakland: Analytics Press.
Finn, S., & O’Fallon, L. (2017). The emergence of environmental health literacy—From its roots to its future potential. Environmental Health Perspectives, 125(4), 495.
Gibbs, L. M. (2011). Love Canal: And the birth of the environmental health movement. Washington, DC: Island Press.
Goho, S. A. (2016). The legal implications of report back in household exposure studies. Environmental Health Perspectives, 124(11), 1662–1670.
Gore, A. C., Chappell, V. A., Fenton, S. E., Flaws, J. A., Nadal, A., Prins, G. S., et al. (2015). Executive summary to EDC-2: The Endocrine Society’s second scientific statement on endocrine-disrupting chemicals. Endocrine Reviews, 36(6), 593–602.
Harley, K. G., Kogut, K., Madrigal, D. S., Cardenas, M., Vera, I. A., Meza-Alfaro, G., et al. (2016). Reducing phthalate, paraben, and phenol exposure from personal care products in adolescent girls: Findings from the HERMOSA intervention study. Environmental Health Perspectives, 124(10), 1600–1607.
Hawthorne, M. (2017). Federal panel votes to warn public about flame retardants in baby products, furniture. Chicago Tribune (Chicago) 20 September 2017.
Hernick, A. D., Brown, M. K., Pinney, S. M., Biro, F. M., Ball, K. M., & Bornschein, R. L. (2011). Sharing unexpected biomarker results with study participants. Environmental Health Perspectives, 119(1), 1.
HHS (Department of Health and Human Services). (2017a). NHANES health measurements. Available: https://wwwn.cdc.gov/nchs/data/nhanes/2017-2018/documents/2017_health_measurements_list.pdf. Accessed 18 Oct 2017.
HHS (Department of Health and Human Services). (2017b). National report on human exposure to environmental chemicals: Frequently asked questions. Available: https://www.cdc.gov/exposurereport/faq.html. Accessed 23 Oct 2017.
Is it in us?. (2017). Project results. Available: http://isitinus.org/project.php. Accessed 10 Oct 2017.
Judd, S., & Plumb, M. (2012). Reporting personal exposures to environmental chemicals: Focus group feedback. Oakland: Child Health and Development Studies, Public Health Institute.
Judge, J. M., Brown, P., Brody, J. G., & Ryan, S. (2016). The exposure experience: Ohio river valley residents respond to local perfluorooctanoic acid (PFOA) contamination. Journal of Health and Social Behavior, 57(3), 333–350.
Kosslyn, S. M. (2006). Graph design for the eye and mind. New York: Oxford University Press.
Kroll-Smith, J. S., & Couch, S. R. (1991). As if exposure to toxins were not enough: The social and cultural system as a secondary stressor. Environmental Health Perspectives, 95, 61–66.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.
Loewenstein, G. (1994). The psychology of curiosity: A review and reinterpretation. Psychological Bulletin, 116(1), 75.
Mackendrick, N. (2014). More work for mother: Chemical body burdens as a maternal responsibility. Gender & Society, 28(5), 705–728.
Mackendrick, N. (2015). Protecting ourselves from chemicals: A study of gender and precautionary consumption. In D. N. Scott (Ed.), Our chemical selves: Gender, toxics, and environmental health (pp. 58–77). Vancouver: UBC Press.
Mastroianni, A. C., & Kahn, J. P. (2002). Risk and responsibility: Ethics, Grimes v Kennedy Krieger, and public health research involving children. American Journal of Public Health, 92(7), 1073–1076.
McKelvey, W., Brody, J. G., Aschengrau, A., & Swartz, C. H. (2004). Association between residence on Cape Cod, Massachusetts, and breast cancer. Annals of Epidemiology, 14(2), 89–94.
Mind Disrupted. (2017). About the report. Available: http://minddisrupted.org/about.php. Accessed 10 Oct 2017.
Minkler, M., & Wallerstein, N. (Eds.). (2008). Community-based participatory research for health: From process to outcomes. San Francisco: Jossey-Bass.
Morello-Frosch, R., Brody, J. G., Brown, P., Altman, R. G., Rudel, R. A., & Pérez, C. (2009). Toxic ignorance and right-to-know in biomonitoring results communication: A survey of scientists and study participants. Environmental Health, 8(1), 6.
Morgan, M., Fischhoff, B., Bostrom, A., & Atman, C. (2002). Risk communication: A mental models approach. Cambridge: Cambridge University Press.
National Research Council. (1989). Improving risk communication, report of the committee on risk perception and communication, commission on Behavioural and social sciences and education, National Research Council. Washington, DC: National Academy Press.
Nelson, J. W., Scammell, M. K., Altman, R. G., Webster, T. F., & Ozonoff, D. M. (2009). A new spin on research translation: The Boston consensus conference on human biomonitoring. Environmental Health Perspectives, 117(4), 495–499.
Ohayon, J. L., Cousins, E., Brown, P., Morello-Frosch, R., & Brody, J. G. (2017). Researcher and institutional review board perspectives on the benefits and challenges of reporting back biomonitoring and environmental exposure results. Environmental Research, 153, 140–149.
O'Rourke, D. (2005). Market movements: Nongovernmental organization strategies to influence global production and consumption. Journal of Industrial Ecology, 9(1–2), 115–128.
Quandt, S. A., Doran, A. M., Rao, P., Hoppin, J. A., Snively, B. M., & Arcury, T. A. (2004). Reporting pesticide assessment results to farmworker families: Development, implementation, and evaluation of a risk communication strategy. Environmental Health Perspectives, 112(5), 636.
Quigley, D. (2012). Applying bioethical principles to place-based communities and cultural group protections: The case of biomonitoring results communication. The Journal of Law, Medicine & Ethics, 40(2), 348–358.
Ramirez-Andreotta, M. D., Brody, J. G., Lothrop, N., Loh, M., Beamer, P. I., & Brown, P. (2016). Reporting back environmental exposure data and free choice learning. Environmental Health, 15(1), 2.
Rudel, R. A., Camann, D. E., Spengler, J. D., Korn, L. R., & Brody, J. G. (2003). Phthalates, alkylphenols, pesticides, polybrominated diphenyl ethers, and other endocrine-disrupting compounds in indoor air and dust. Environmental Science & Technology, 37(20), 4543–4553.
Rudel, R. A., Seryak, L. M., & Brody, J. G. (2008). PCB-containing wood floor finish is a likely source of elevated PCBs in residents' blood, household air and dust: A case study of exposure. Environmental Health, 7, 2.
Rudel, R. A., Dodson, R. E., Perovich, L. J., Morello-Frosch, R., Camann, D. E., Zuniga, M. M., et al. (2010). Semivolatile endocrine-disrupting compounds in paired indoor and outdoor air in two northern California communities. Environmental Science & Technology, 44(17), 6583–6590.
Rudel, R. A., Gray, J. M., Engel, C. L., Rawsthorne, T. W., Dodson, R. E., Ackerman, J. M., et al. (2011). Food packaging and bisphenol A and bis(2-ethyhexyl) phthalate exposure: Findings from a dietary intervention. Environmental Health Perspectives, 119(7), 914–920.
SACHRP (Secretary’s Advisory Committee on Human Research Protections). (2016). Attachment B: Return of individual research results in July 21, 2016 SACHRP Letter to the HHS Secretary.U.S. Department of health and human services.
Saxton, D. I., Brown, P., Seguinot-Medina, S., Eckstein, L., Carpenter, D. O., Miller, P., et al. (2015). Environmental health and justice and the right to research: Institutional review board denials of community-based chemical biomonitoring of breast milk. Environmental Health, 14(1), 90.
Silent Spring Institute. (2017). MyCHDSReport. Available: http://45.33.82.210/. Accessed 18 October 2017.
State of California Senate. (2006). California environmental contaminant biomonitoring program (Senate Bill No. 1379). California Health and Safety Code § 105440–105444.
UNEP/WHO. (2013). State of the science of endocrine disrupting chemicals - 2012. Geneva: United Nations Environment Programme and the World Health Organization.
Wu, N., McClean, M. D., Brown, P., Aschengrau, A., & Webster, T. F. (2009). Participant experiences in a breastmilk biomonitoring study: A qualitative assessment. Environmental Health, 8, 4.
Zikmund-Fisher, B. J., Turkelson, A., Franzblau, A., Diebol, J. K., Allerton, L. A., & Parker, E. A. (2013). The effect of misunderstanding the chemical properties of environmental contaminants on exposure beliefs: A case involving dioxins. Science of the Total Environment, 447, 293–300.
Zota, A. R., Rudel, R. A., Morello-Frosch, R. A., & Brody, J. G. (2008). Elevated house dust and serum concentrations of PBDEs in California: Unintended consequences of furniture flammability standards? Environmental Science & Technology, 42(21), 8158–8164.
Zota, A. R., Singla, V., Adamkiewicz, G., Mitro, S. D., & Dodson, R. E. (2017). Reducing chemical exposures at home: Opportunities for action. Journal of Epidemiology and Community Health, 71(9), 937–940.
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Brody, J.G., Brown, P., Morello-Frosch, R.A. (2019). Returning Chemical Exposure Results to Individuals and Communities. In: Finn, S., O'Fallon, L. (eds) Environmental Health Literacy. Springer, Cham. https://doi.org/10.1007/978-3-319-94108-0_6
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