Improving Disclosure and Consent

Brody, Julia Green; Morello‐Frosch, Rachel; Brown, Phil; Rudel, Ruthann A.; Altman, Rebecca Gasior; Frye, Margaret; Osimo, Cheryl A.; Pérez, Carla; Seryak, Liesel M.

doi:10.2105/ajph.2006.094813

Cited by 109 publications

(104 citation statements)

References 16 publications

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“…Communicating individual results when there is a lack of health guidance values to interpret the data may empower individuals or could cause worry and concern (Brody et al, 2007). Washburn's experience from interviewing HBM study participants suggested that frustration due to an individual's limited ability to take action to protect themselves from future exposures is also an issue (Washburn, 2014).…”

Section: Introductionmentioning

confidence: 99%

Communication in a Human biomonitoring study: Focus group work, public engagement and lessons learnt in 17 European countries

Exley

Cano

Aerts

et al. 2015

Environmental Research

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A communication strategy was developed by The Consortium to Perform Human Biomonitoring on a European Scale (COPHES), as part of its objectives to develop a framework and protocols to enable the collection of comparable human biomonitoring data throughout Europe. The framework and protocols were tested in the pilot study DEMOCOPHES (Demonstration of a study to Coordinate and Perform Human biomonitoring on a European Scale). The aims of the communication strategy were to raise awareness of human biomonitoring, encourage participation in the study and to communicate the study results and their public health significance. It identified the audiences and key messages, documented the procedure for dissemination of results and was updated as the project progressed. A communication plan listed the tools and materials such as press releases, flyers, recruitment letters and information leaflets required for each audience with a time frame for releasing them. Public insight research was used to evaluate the recruitment material, and the feedback was used to improve the documents. Dissemination of results was coordinated in a step by step approach by the participating countries within DEMOCOPHES, taking into account specific national messages according to the needs of each country. Participants received individual results, unless they refused to be informed, along with guidance on what the results meant. The aggregate results and policy recommendations were then communicated to the general public and stakeholders, followed by dissemination at European level. Several lessons were learnt that may assist other future human biomonitoring studies. Recruitment took longer than anticipated and so social scientists, to help with community engagement, should be part of the research team from the start. As a European study, involving multiple countries, additional considerations were needed for the numerous organisations, different languages, cultures, policies and priorities. Therefore, communication documents should be seen as templates with essential information clearly indicated and the option for each country to tailor the material to reflect these differences. Future studies should consider setting up multidisciplinary networks of medical professionals and communication experts, and holding training workshops to discuss the interpretation of results and risk communication. Publicity and wide dissemination of the results helped to raise awareness of human biomonitoring to the general public, policy makers and other key stakeholders. Effective and timely communication, at all stages of a study, is essential if the potential of human biomonitoring research to improve public health is to be realised.

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Section: Introductionmentioning

confidence: 99%

Communication in a Human biomonitoring study: Focus group work, public engagement and lessons learnt in 17 European countries

Exley

Cano

Aerts

et al. 2015

Environmental Research

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“…justice, equity, and truth) into risk analysis by involving the affected public in assessing risk and designing risk communication methods (NRC 1996a; Cox 2013). This is similar to the four guidelines to protecting human research participants and deciding whether to report individual results outlined in Brody et al (2007) and Fernandez et al (2003): autonomy (right to know), beneficence (maximum good), nonmalfeasance (minimize harm), and justice (distribution of benefits and harm). A cultural model of risk communication makes use of local knowledge in risk studies and recognizes the relevant experience of the local community (Cox 2006; Corburn 2005; Dewey 1954).…”

Section: 0 Participatory Approachesmentioning

confidence: 82%

“…Communicating the findings and the potential risks associated with the findings is a crucial and integral step in the ERT process. Community members need to learn the results of exposure studies and the potential associated risks regardless of their educational background (Brody et al 2007; Morello-Frosch et al 2009; Adams et al 2011). .…”

Section: 0 Environmental Research Translationmentioning

confidence: 99%

Environmental Research Translation: Enhancing interactions with communities at contaminated sites

Ramírez‐Andreotta

Brusseau

Artiola

et al. 2014

Science of The Total Environment

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The characterization and remediation of contaminated sites are complex endeavors fraught with numerous challenges. One particular challenge that is receiving increased attention is the development and encouragement of full participation by communities and community members affected by a given site in all facets of decision-making. Many disciplines have been grappling with the challenges associated with environmental and risk communication, public participation in environmental data generation, and decision-making and increasing community capacity. The concepts and methods developed by these disciplines are reviewed, with a focus on their relevance to the specific dynamics associated with environmental contamination sites. The contributions of these disciplines are then synthesized and integrated to help develop Environmental Research Translation (ERT), a proposed framework for environmental scientists to promote interaction and communication among involved parties at contaminated sites. This holistic approach is rooted in public participation approaches to science, which includes: a transdisciplinary team, effective collaboration, information transfer, public participation in environmental projects, and a cultural model of risk communication. Although there are challenges associated with the implementation of ERT, it is anticipated that application of this proposed translational science method could promote more robust community participation at contaminated sites.

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“…Furthermore, social media became an important avenue by which the research team was contacted to conduct interviews with local media (eg local newspapers, radio). Social media has previously been identified as a means of increasing the impact and the accessibility of research for participants, including participants living in Indigenous communities [32,33]. …”

Section: Communicationmentioning

confidence: 99%

Design of a human biomonitoring community-based project in the Northwest Territories Mackenzie Valley, Canada, to investigate the links between nutrition, contaminants and country foods

Ratelle

Laird

Majowicz

et al. 2018

International Journal of Circumpolar Health

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Community-based projects place emphasis on a collaborative approach and facilitate research among Indigenous populations regarding local issues and challenges, such as traditional foods consumption, climate change and health safety. Country foods (locally harvested fish, game birds, land animals and plants), which contribute to improved food security, can also be a primary route of contaminant exposure among populations in remote regions. A community-based project was launched in the Dehcho and Sahtù regions of the Northwest Territories (Canada) to: 1) assess contaminants exposure and nutrition status; 2) investigate the role of country food on nutrient and contaminant levels and 3) understand the determinants of message perception on this issue. Consultation with community members, leadership, local partners and researchers was essential to refine the design of the project and implement it in a culturally relevant way. This article details the design of a community-based biomonitoring study that investigates country food use, contaminant exposure and nutritional status in Canadian subarctic First Nations in the Dehcho and Sahtù regions. Results will support environmental health policies in the future for these communities. The project was designed to explore the risks and benefits of country foods and to inform the development of public health strategies.

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Improving Disclosure and Consent

Cited by 109 publications

References 16 publications

Communication in a Human biomonitoring study: Focus group work, public engagement and lessons learnt in 17 European countries

Communication in a Human biomonitoring study: Focus group work, public engagement and lessons learnt in 17 European countries

Environmental Research Translation: Enhancing interactions with communities at contaminated sites

Design of a human biomonitoring community-based project in the Northwest Territories Mackenzie Valley, Canada, to investigate the links between nutrition, contaminants and country foods

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