DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results

• Katherine E. Boronow ^[1] ; Herbert P. Susmann ^[1] ; Krzysztof Z. Gajos ^[3] ; Ruthann A. Rudel ^[1] ; Kenneth C. Arnold ^[3] ; Phil Brown ^[2] ; Rachel Morello-Frosch ^[4] ; Laurie Havas ^[5] ; Julia Green Brody ^[1]
  1. [1] Silent Spring Institute

     Silent Spring Institute

     City of Newton, Estados Unidos

     
  2. [2] Northeastern University

     Northeastern University

     City of Boston, Estados Unidos

     
  3. [3] 2 Harvard John A. Paulson School of Engineering and Applied Sciences, Cambridge, Massachusetts, USA
  4. [4] 4 Department of Environmental Science, Policy and Management and School of Public Health, University of California, Berkeley, California, USA
  5. [5] 5 Child Health and Development Studies Participant Advisory Council, Berkeley, California, USA

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• Localización: Environmental health perspectives, ISSN 0091-6765, Vol. 125, Nº. 2, 2017, págs. 27-33
• Idioma: inglés
• DOI: 10.1289/EHP702
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• Resumen

  • Researchers and clinicians in environmental health and medicine increasingly show respect for participants and patients by involving them in decision-making. In this context, the return of personal results to study participants is becoming ethical best practice, and many participants now expect to see their data. However, researchers often lack the time and expertise required for report-back, especially as studies measure greater numbers of analytes, including many without clear health guidelines. In this article, our goal is to demonstrate how a prototype digital method, the Digital Exposure Report-Back Interface (DERBI), can reduce practical barriers to high-quality report-back. DERBI uses decision rules to automate the production of personalized summaries of notable results and generates graphs of individual results with comparisons to the study group and benchmark populations. Reports discuss potential sources of chemical exposure, what is known and unknown about health effects, strategies for exposure reduction, and study-wide findings. Researcher tools promote discovery by drawing attention to patterns of high exposure and offer novel ways to increase participant engagement. DERBI reports have been field tested in two studies. Digital methods like DERBI reduce practical barriers to report-back thus enabling researchers to meet their ethical obligations and participants to get knowledge they can use to make informed choices.

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