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1.
Am J Public Health ; 114(5): 501-510, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38489500

RESUMO

Objectives. To assess the US incarcerated population's risk of exposure to per- and polyfluoroalkyl substances (PFASs). Methods. We assessed how many of the 6118 US carceral facilities were located in the same hydrologic unit code watershed boundaries as known or likely locations of PFAS contamination. We conducted geospatial analyses on data aggregated from Environmental Protection Agency databases and a PFAS site tracker in 2022 to model the hydrologically feasible known and presumptive PFAS contamination sites for nearly 2 million incarcerated people. Results. Findings indicate that 5% (∼310) of US carceral facilities have at least 1 known source of PFAS contamination in the same watershed boundary and that it is at a higher elevation than the facility; also 47% (∼2285) have at least 1 presumptive source. A minimum of 990 000 people are incarcerated in these facilities, including at least 12 800 juveniles. Exposure risks faced by incarcerated youths are disproportionately underassessed. Conclusions. The long-term impacts from potential exposures to PFAS are preventable and exacerbate health inequities among incarcerated populations. Widespread public attention to PFASs can be parlayed into broader environmental monitoring for imprisoned people. (Am J Public Health. 2024;114(5):501-510. https://doi.org/10.2105/AJPH.2024.307571).


Assuntos
Fluorocarbonos , Estados Unidos , Humanos , Adolescente , Fluorocarbonos/análise , Monitoramento Ambiental , United States Environmental Protection Agency
2.
Environ Sci Technol ; 58(15): 6616-6627, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38569050

RESUMO

While the extent of environmental contamination by per- and polyfluoroalkyl substances (PFAS) has mobilized considerable efforts around the globe in recent years, publicly available data on PFAS in Europe were very limited. In an unprecedented experiment of "expert-reviewed journalism" involving 29 journalists and seven scientific advisers, a cross-border collaborative project, the "Forever Pollution Project" (FPP), drew on both scientific methods and investigative journalism techniques such as open-source intelligence (OSINT) and freedom of information (FOI) requests to map contamination across Europe, making public data that previously had existed as "unseen science". The FPP identified 22,934 known contamination sites, including 20 PFAS manufacturing facilities, and 21,426 "presumptive contamination sites", including 13,745 sites presumably contaminated with fluorinated aqueous film-forming foam (AFFF) discharge, 2911 industrial facilities, and 4752 sites related to PFAS-containing waste. Additionally, the FPP identified 231 "known PFAS users", a new category for sites with an intermediate level of evidence of PFAS use and considered likely to be contamination sources. However, the true extent of contamination in Europe remains significantly underestimated due to a lack of comprehensive geolocation, sampling, and publicly available data. This model of knowledge production and dissemination offers lessons for researchers, policymakers, and journalists about cross-field collaborations and data transparency.


Assuntos
Fluorocarbonos , Poluentes Químicos da Água , Fluorocarbonos/análise , Poluentes Químicos da Água/análise , Poluição Ambiental , Europa (Continente) , Comércio
3.
Environ Health ; 21(Suppl 1): 121, 2023 01 12.
Artigo em Inglês | MEDLINE | ID: mdl-36635700

RESUMO

BACKGROUND: Understanding, characterizing, and quantifying human exposures to environmental chemicals is critical to protect public health. Exposure assessments are key to determining risks to the general population and for specific subpopulations given that exposures differ between groups. Exposure data are also important for understanding where interventions, including public policies, should be targeted and the extent to which interventions have been successful. In this review, we aim to show how inadequacies in exposure assessments conducted by polluting industries or regulatory agencies have led to downplaying or disregarding exposure concerns raised by communities; that underestimates of exposure can lead regulatory agencies to conclude that unacceptable risks are, instead, acceptable, allowing pollutants to go unregulated; and that researchers, risk assessors, and policy makers need to better understand the issues that have affected exposure assessments and how appropriate use of exposure data can contribute to health-protective decisions. METHODS: We describe current approaches used by regulatory agencies to estimate human exposures to environmental chemicals, including approaches to address limitations in exposure data. We then illustrate how some exposure assessments have been used to reach flawed conclusions about environmental chemicals and make recommendations for improvements. RESULTS: Exposure data are important for communities, public health advocates, scientists, policy makers, and other groups to understand the extent of environmental exposures in diverse populations. We identify four areas where exposure assessments need to be improved due to systemic sources of error or uncertainty in exposure assessments and illustrate these areas with examples. These include: (1) an inability of regulatory agencies to keep pace with the increasing number of chemicals registered for use or assess their exposures, as well as complications added by use of 'confidential business information' which reduce available exposure data; (2) the failure to keep assessments up-to-date; (3) how inadequate assumptions about human behaviors and co-exposures contribute to underestimates of exposure; and (4) that insufficient models of toxicokinetics similarly affect exposure estimates. CONCLUSION: We identified key issues that impact capacity to conduct scientifically robust exposure assessments. These issues must be addressed with scientific or policy approaches to improve estimates of exposure and protect public health.


Assuntos
Exposição Ambiental , Poluentes Ambientais , Humanos , Exposição Ambiental/efeitos adversos , Exposição Ambiental/prevenção & controle , Poluentes Ambientais/toxicidade , Poluentes Ambientais/análise , Saúde Pública , Política Pública , Incerteza , Medição de Risco
4.
Environ Health ; 21(Suppl 1): 132, 2023 01 12.
Artigo em Inglês | MEDLINE | ID: mdl-36635734

RESUMO

The manufacture and production of industrial chemicals continues to increase, with hundreds of thousands of chemicals and chemical mixtures used worldwide, leading to widespread population exposures and resultant health impacts. Low-wealth communities and communities of color often bear disproportionate burdens of exposure and impact; all compounded by regulatory delays to the detriment of public health. Multiple authoritative bodies and scientific consensus groups have called for actions to prevent harmful exposures via improved policy approaches. We worked across multiple disciplines to develop consensus recommendations for health-protective, scientific approaches to reduce harmful chemical exposures, which can be applied to current US policies governing industrial chemicals and environmental pollutants. This consensus identifies five principles and scientific recommendations for improving how agencies like the US Environmental Protection Agency (EPA) approach and conduct hazard and risk assessment and risk management analyses: (1) the financial burden of data generation for any given chemical on (or to be introduced to) the market should be on the chemical producers that benefit from their production and use; (2) lack of data does not equate to lack of hazard, exposure, or risk; (3) populations at greater risk, including those that are more susceptible or more highly exposed, must be better identified and protected to account for their real-world risks; (4) hazard and risk assessments should not assume existence of a "safe" or "no-risk" level of chemical exposure in the diverse general population; and (5) hazard and risk assessments must evaluate and account for financial conflicts of interest in the body of evidence. While many of these recommendations focus specifically on the EPA, they are general principles for environmental health that could be adopted by any agency or entity engaged in exposure, hazard, and risk assessment. We also detail recommendations for four priority areas in companion papers (exposure assessment methods, human variability assessment, methods for quantifying non-cancer health outcomes, and a framework for defining chemical classes). These recommendations constitute key steps for improved evidence-based environmental health decision-making and public health protection.


Assuntos
Poluentes Ambientais , Humanos , Exposição Ambiental/efeitos adversos , Exposição Ambiental/prevenção & controle , Saúde Ambiental , Poluentes Ambientais/análise , Saúde Pública , Medição de Risco , Conferências de Consenso como Assunto
5.
Environ Res ; 212(Pt A): 113173, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35351450

RESUMO

Participants in biomonitoring studies who receive personal exposure reports seek information to reduce exposures. Many chemical exposures are driven by systems-level policies rather than individual actions; therefore, change requires engagement in collective action. Participants' perceptions of collective action and use of report-back to support engagement remain unclear. We conducted virtual focus groups during summer 2020 in a diverse group of peripartum people from cohorts in the Environmental influences on Child Health Outcomes (ECHO) Program (N = 18). We assessed baseline exposure and collective action experience, and report-back preferences. Participants were motivated to protect the health of their families and communities despite significant time and cognitive burdens. They requested time-conscious tactics and accessible information to enable action to reduce individual and collective exposures. Participant input informed the design of digital report-back in the cohorts. This study highlights opportunities to shift responsibility from individuals to policymakers to reduce chemical exposures at the systems level.


Assuntos
Exposição Ambiental , Monitoramento Ambiental , Criança , Exposição Ambiental/análise , Exposição Ambiental/prevenção & controle , Grupos Focais , Humanos , Período Periparto
6.
Matern Child Health J ; 24(1): 22-29, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31728717

RESUMO

Puerto Rico was hit by two major hurricanes in September 2017 causing great devastation, losing over 90% of the power grid, wireless communication and access to potable water, and destroying many homes. Our research programs: Puerto Rico Testsite for Exploring Contamination Threats (PROTECT), Center for Research on Early Childhood Exposure and Development in Puerto Rico (CRECE), Zika in Infants and Pregnancy (ZIP), and Environmental Influences on Child Health Outcomes (ECHO) are ongoing observational cohort studies that have been investigating environmental risk factors for perinatal health outcomes among Puerto Rican mothers and infants. Our projects paused operations for about two weeks, to begin recovery process and become a source of assistance, retaining 95% of study participants across all research programs. We joined with various groups to ensure the safety and welfare of team members, study participants, community health center partners, and members of the surrounding communities. We learned important lessons about the impact of these hurricanes and the difficulties of the recovery. Major challenges post-hurricanes were access to care and nutrition, maternal stress, and environmental damage. We understood the need to integrate disaster preparedness into our programs' operating procedures and future applications, recognizing that these events will recur. We will grow resilience among our staff, maternal and child health partners, and participants by building on the experience of these two storms.


Assuntos
Saúde da Criança , Tempestades Ciclônicas , Desastres , Serviços de Saúde Materno-Infantil/organização & administração , Criança , Planejamento em Desastres/organização & administração , Feminino , Humanos , Lactente , Masculino , Porto Rico
7.
Popul Environ ; 42(1): 95-111, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33746324

RESUMO

Prior to Hurricane Maria, Puerto Rico already had 200+ hazardous waste sites, significant contamination of water resources, and among the highest rates of preterm birth in the US. To address these issues, the Puerto Rico Testsite for Exploring Contamination Threats (PROTECT) Center was formed in 2010 to investigate prenatal environmental exposures, particularly phthalates, and adverse birth outcomes. Recent work from the PROTECT study confirms that in utero exposure to certain phthalates is associated with shorter gestation and increased risk of preterm birth. However, previous research also suggests that pregnant women who experience a natural disaster such as Hurricane Maria are at higher risk of adverse birth outcomes, but it is unknown whether this is due to stress, hazardous exposures, or a combination of factors. Thus, the aim of this analysis was to characterize hurricane-related changes in phthalate exposures and experiences within the PROTECT cohort. Among 176 participants who were pregnant during or within 5 months after Maria, 122 completed a questionnaire on hurricane-related experiences. Questionnaire results and biomarkers of exposure suggest that participants did not have regular access to fresh foods and water during hurricane recovery, and almost half reported structural damage to their home. In addition, biomarker concentrations of phthalates commonly used in food packaging were higher among participants post-hurricane, while phthalates commonly used in personal care products were lower compared to pre-hurricane levels. Hurricane-related increases in phthalate exposure, as well as widespread structural damage, food and water shortages, and long-term absence of electricity and cell phone service, likely increased the risk of adverse birth outcomes among this already vulnerable population.

8.
Sci Eng Ethics ; 25(2): 477-517, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-29299754

RESUMO

Researchers of the Northeast Ethics Education Partnership (NEEP) at Brown University sought to improve an understanding of the ethical challenges of field researchers with place-based communities in environmental studies/sciences and environmental health by disseminating a questionnaire which requested information about their ethical approaches to these researched communities. NEEP faculty sought to gain actual field guidance to improve research ethics and cultural competence training for graduate students and faculty in environmental sciences/studies. Some aspects of the ethical challenges in field studies are not well-covered in the literature. More training and information resources are needed on the bioethical challenges in environmental field research relating to maximizing benefits/reducing risks to local inhabitants and ecosystems from research; appropriate and effective group consent and individual consent processes for many diverse communities in the United States and abroad; and justice considerations of ensuring fair benefits and protections against exploitation through community-based approaches, and cultural appropriateness and competence in researcher relationships.


Assuntos
Competência Cultural , Ecologia/ética , Meio Ambiente , Saúde Ambiental/ética , Ética em Pesquisa , Características de Residência , Justiça Social , Temas Bioéticos , Relações Comunidade-Instituição , Ecossistema , Humanos , Consentimento Livre e Esclarecido , Ética Baseada em Princípios , Projetos de Pesquisa , Pesquisadores , Rhode Island , Inquéritos e Questionários , Universidades
9.
Am J Public Health ; 108(S2): S89-S94, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29698086

RESUMO

We explore and contextualize changes at the Environmental Protection Agency (EPA) over the first 6 months of the Trump administration, arguing that its pro-business direction is enabling a form of regulatory capture. We draw on news articles, public documents, and a rapid response, multisited interview study of current and retired EPA employees to (1) document changes associated with the new administration, (2) contextualize and compare the current pro-business makeover with previous ones, and (3) publicly convey findings in a timely manner. The lengthy, combined experience of interviewees with previous Republican and Democratic administrations made them valuable analysts for assessing recent shifts at the Scott Pruitt-led EPA and the extent to which these shifts steer the EPA away from its stated mission to "protect human and environmental health." Considering the extent of its pro-business leanings in the absence of mitigating power from the legislative branch, we conclude that its regulatory capture has become likely-more so than at similar moments in the agency's 47-year history. The public and environmental health consequences of regulatory capture of the EPA will probably be severe and far-reaching.


Assuntos
Saúde Ambiental/legislação & jurisprudência , United States Environmental Protection Agency/organização & administração , Comércio/legislação & jurisprudência , Política , Estados Unidos
10.
Am J Public Health ; 108(S2): S95-S103, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29698097

RESUMO

The Trump administration has undertaken an assault on the Environmental Protection Agency (EPA), an agency critical to environmental health. This assault has precedents in the administrations of Ronald Reagan and George W. Bush. The early Reagan administration (1981-1983) launched an overt attack on the EPA, combining deregulation with budget and staff cuts, whereas the George W. Bush administration (2001-2008) adopted a subtler approach, undermining science-based policy. The current administration combines both these strategies and operates in a political context more favorable to its designs on the EPA. The Republican Party has shifted right and now controls the executive branch and both chambers of Congress. Wealthy donors, think tanks, and fossil fuel and chemical industries have become more influential in pushing deregulation. Among the public, political polarization has increased, the environment has become a partisan issue, and science and the mainstream media are distrusted. For these reasons, the effects of today's ongoing regulatory delays, rollbacks, and staff cuts may well surpass those of the administrations of Reagan and Bush, whose impacts on environmental health were considerable.


Assuntos
Conservação dos Recursos Naturais/legislação & jurisprudência , Saúde Ambiental/história , Política , Política Pública/história , Saúde Ambiental/legislação & jurisprudência , História do Século XX , História do Século XXI , Humanos , Estados Unidos , United States Environmental Protection Agency/economia , United States Environmental Protection Agency/legislação & jurisprudência
11.
Environ Health ; 17(1): 48, 2018 05 21.
Artigo em Inglês | MEDLINE | ID: mdl-29784007

RESUMO

BACKGROUND: Emerging evidence about the effects of endocrine disruptors on asthma symptoms suggests new opportunities to reduce asthma by changing personal environments. Right-to-know ethics supports returning personal results for these chemicals to participants, so they can make decisions to reduce exposures. Yet researchers and institutional review boards have been reluctant to approve results reports in low-income communities, which are disproportionately affected by asthma. Concerns include limited literacy, lack of resources to reduce exposures, co-occurring stressors, and lack of models for effective reporting. To better understand the ethical and public health implications of returning personal results in low-income communities, we investigated parents' experiences of learning their children's environmental chemical and biomonitoring results in the Green Housing Study of asthma. METHODS: The Green Housing Study measured indoor chemical exposures, allergens, and children's asthma symptoms in "green"-renovated public housing and control sites in metro-Boston and Cincinnati in 2011-2013. We developed reports for parents of children in the study, including results for their child and community. We observed community meetings where results were reported, and metro-Boston residents participated in semi-structured interviews in 2015 about their report-back experience. Interviews were systematically coded and analyzed. RESULTS: Report-back was positively received, contributed to greater understanding, built trust between researchers and participants, and facilitated action to improve health. Sampling visits and community meetings also contributed to creating a positive study experience for participants. Participants were able to make changes in their homes, such as altering product use and habits that may reduce asthma symptoms, though some faced roadblocks from family members. Participants also gained access to medical resources, though some felt that clinicians were not responsive. Participants wanted larger scale change from government or industry and wanted researchers to leverage study results to achieve change. CONCLUSIONS: Report-back on environmental chemical exposures in low-income communities can enhance research benefits by engaging residents with personally relevant information that informs and motivates actions to reduce exposure to asthma triggers. Ethical practices in research should support deliberative report-back in vulnerable communities.


Assuntos
Asma/etiologia , Exposição Ambiental/análise , Pais/psicologia , Saúde Pública/ética , Boston , Criança , Cidades , Feminino , Humanos , Entrevistas como Assunto , Alfabetização , Masculino , Ohio , Habitação Popular
12.
BMC Med Educ ; 18(1): 155, 2018 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-29970068

RESUMO

BACKGROUND: The goals of this study were (1) to determine early intervention (EI) Speech-Language Pathologists' (SLPs) level of training and knowledge on environmental toxicants and their effect on infant and child development; and (2) to examine the effectiveness of a continuing education (CE) event designed to enhance the knowledge of EI SLPs on environmental toxicants and their effects on child development. METHODS: A survey was launched via Qualtrics and posted on the American Speech-Language Hearing Association's Early Intervention Community page to assess environmental health knowledge of SLPs. Results from this survey were used to create an environmental health CE event targeted towards EI SLPs. Attendees were given a pre- and post-test to assess the effectiveness of our program. RESULTS: One hundred and fifty-eight participants completed the online survey and a majority (61%, n = 97) of participants reported some level of dissatisfaction with their previous training in regards to environmental exposures. Fifty-six percent (n = 89) of the participants also reported feeling unprepared to be a health advocate regarding environmental exposure concerns within their community. Forty-eight people (26 SLPs and 22 SLP master's students) attended the CE event. Paired t-tests revealed significant improvements from the pre- to the post- test results among all attendees. CONCLUSIONS: These findings suggest that SLPs who work in EI feel undertrained and unprepared to advocate for environmental health to the families they serve. This study reveals that CE is one way by which to increase the knowledge base of SLPs on environmental health.


Assuntos
Desenvolvimento Infantil , Intervenção Educacional Precoce , Saúde Ambiental/educação , Poluentes Ambientais/toxicidade , Conhecimentos, Atitudes e Prática em Saúde , Patologia da Fala e Linguagem/educação , Criança , Humanos , Patologia da Fala e Linguagem/estatística & dados numéricos , Inquéritos e Questionários
13.
Soc Stud Sci ; 48(5): 691-714, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30235980

RESUMO

Understandings of environmental governance both assume and challenge the relationship between expert knowledge and corresponding action. We explore this interplay by examining the context of knowledge production pertaining to a contested class of chemicals. Per-and polyfluorinated alkyl substances (PFASs) are widely used industrial compounds containing chemical chains of carbon and fluorine that are persistent, bioaccumulative and toxic. Although industry and regulatory scientists have studied the exposure and toxicity concerns of these compounds for decades, and several contaminated communities have documented health concerns as a result of their high levels of exposure, PFAS use remains ubiquitous in a large range of consumer and industrial products. Despite this significant history of industry knowledge production documenting exposure and toxicity concerns, the regulatory approach to PFASs has been limited. This is largely due to a regulatory framework that privileges industry incentives for rapid market entry and trade secret protection over substantive public health protection, creating areas of unseen science, research that is conducted but never shared outside of institutional boundaries. In particular, the risks of PFASs have been both structurally hidden and unexamined by existing regulatory and industry practice. This reveals the uneven pathways that construct issues of social and scientific concern.


Assuntos
Regulamentação Governamental/história , Hidrocarbonetos Fluorados/história , Saúde Pública/história , Pesquisa/história , História do Século XX , Hidrocarbonetos Fluorados/efeitos adversos , Hidrocarbonetos Fluorados/economia , Pesquisa/organização & administração
14.
Environ Res ; 153: 140-149, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27960129

RESUMO

As the number of personal exposure studies expands and trends favor greater openness and transparency in the health sciences, ethical issues arise around reporting back individual results for contaminants without clear health guidelines. Past research demonstrates that research participants want their results even when the health implications are not known. The experiences of researchers and institutional review boards (IRBs) in studies that have reported personal chemical exposures can provide insights about ethical and practical approaches while also revealing areas of continued uncertainty. We conducted semi-structured interviews with 17 researchers and nine IRB members from seven personal exposure studies across the United States to investigate their experiences and attitudes about the report-back process. Researchers reported multiple benefits of report-back, including increasing retention and recruitment, advancing environmental health literacy, empowering study participants to take actions to reduce exposures, encouraging shifts in government and industry practices, and helping researchers discover sources of exposure through participant consultation. Researchers also reported challenges, including maintaining ongoing contact with participants, adopting protocols for notification of high exposures to chemicals without health guidelines, developing meaningful report-back materials, and resource limitations. IRB members reported concern for potential harm to participants, such as anxiety about personal results and counterproductive behavior changes. In contrast, researchers who have conducted personal report-back in their studies said that participants did not appear overly alarmed and noted that worry can be a positive outcome to motivate action to reduce harmful exposures. While key concerns raised during the early days of report-back have been substantially resolved for scientists with report-back experience, areas of uncertainty remain. These include ethical tensions surrounding the responsibility of researchers to leverage study results and resources to assist participants in policy or community-level actions to reduce chemical exposures, and how to navigate report-back to vulnerable populations.


Assuntos
Disruptores Endócrinos/efeitos adversos , Exposição Ambiental , Monitoramento Ambiental/ética , Comitês de Ética em Pesquisa , Pesquisadores , Atitude , Monitoramento Ambiental/métodos , Humanos , Estados Unidos
15.
Environ Sci Technol ; 50(23): 12584-12591, 2016 12 06.
Artigo em Inglês | MEDLINE | ID: mdl-27934269

RESUMO

Concern about the toxicity and exposure of per- and polyfluoroalkyl substances (PFASs) is growing among scientists, regulators, and residents of contaminated communities. In 2016, the United States Food and Drug Administration (FDA) removed three food contact substances (FCSs) containing perfluorinated chemicals from the list of approved FCSs due to concerns regarding chemical safety. To investigate the significance and limitations of the FDA's regulatory action for environmental health research, advocacy, and regulation, we conducted a media analysis and qualitative interviews with a range of involved stakeholders. We find that the FDA's regulatory action represents a potential shift from chemical-by-chemical regulation toward class-based regulation, where groups of chemicals can be identified as sharing properties and risks, and are thus evaluated and regulated together. The FDA decision sets an important precedent of using a petition process to delist chemicals based on a safety standard. However, the narrow reach of this action also highlights the need for more comprehensive, precautionary chemical regulation capable of thoroughly evaluating classes of chemicals, and raises important questions about how classes of chemicals are delimited in environmental health science and regulation.


Assuntos
Saúde Ambiental , Alimentos , Contaminação de Alimentos , Estados Unidos , United States Food and Drug Administration
18.
Environ Health ; 15: 2, 2016 Jan 09.
Artigo em Inglês | MEDLINE | ID: mdl-26748908

RESUMO

Reporting data back to study participants is increasingly being integrated into exposure and biomonitoring studies. Informal science learning opportunities are valuable in environmental health literacy efforts and report back efforts are filling an important gap in these efforts. Using the University of Arizona's Metals Exposure Study in Homes, this commentary reflects on how community-engaged exposure assessment studies, partnered with data report back efforts are providing a new informal education setting and stimulating free-choice learning. Participants are capitalizing on participating in research and leveraging their research experience to meet personal and community environmental health literacy goals. Observations from report back activities conducted in a mining community support the idea that reporting back biomonitoring data reinforces free-choice learning and this activity can lead to improvements in environmental health literacy. By linking the field of informal science education to the environmental health literacy concepts, this commentary demonstrates how reporting data back to participants is tapping into what an individual is intrinsically motivated to learn and how these efforts are successfully responding to community-identified education and research needs.


Assuntos
Participação da Comunidade/métodos , Pesquisa Participativa Baseada na Comunidade/métodos , Exposição Ambiental/prevenção & controle , Monitoramento Ambiental/métodos , Exposição Ambiental/estatística & dados numéricos , Humanos , Comportamento de Busca de Informação , Prevenção Primária/métodos , Características de Residência/estatística & dados numéricos , Estados Unidos
19.
Hastings Cent Rep ; 46(1): 36-45, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26678513

RESUMO

An individual's health, genetic, or environmental-exposure data, placed in an online repository, creates a valuable shared resource that can accelerate biomedical research and even open opportunities for crowd-sourcing discoveries by members of the public. But these data become "immortalized" in ways that may create lasting risk as well as benefit. Once shared on the Internet, the data are difficult or impossible to redact, and identities may be revealed by a process called data linkage, in which online data sets are matched to each other. Reidentification (re-ID), the process of associating an individual's name with data that were considered deidentified, poses risks such as insurance or employment discrimination, social stigma, and breach of the promises often made in informed-consent documents. At the same time, re-ID poses risks to researchers and indeed to the future of science, should re-ID end up undermining the trust and participation of potential research participants. The ethical challenges of online data sharing are heightened as so-called big data becomes an increasingly important research tool and driver of new research structures. Big data is shifting research to include large numbers of researchers and institutions as well as large numbers of participants providing diverse types of data, so the participants' consent relationship is no longer with a person or even a research institution. In addition, consent is further transformed because big data analysis often begins with descriptive inquiry and generation of a hypothesis, and the research questions cannot be clearly defined at the outset and may be unforeseeable over the long term. In this article, we consider how expanded data sharing poses new challenges, illustrated by genomics and the transition to new models of consent. We draw on the experiences of participants in an open data platform-the Personal Genome Project-to allow study participants to contribute their voices to inform ethical consent practices and protocol reviews for big-data research.


Assuntos
Privacidade Genética/ética , Pesquisa em Genética/ética , Projeto Genoma Humano/ética , Consentimento Livre e Esclarecido/ética , Medicina de Precisão/ética , Análise de Sequência de DNA/ética , Anonimização de Dados , Feminino , Grupos Focais , Genoma Humano , Humanos , Consentimento Livre e Esclarecido/normas , Masculino , Medicina de Precisão/tendências , Medição de Risco
20.
Anal Chem ; 87(20): 10338-45, 2015 Oct 20.
Artigo em Inglês | MEDLINE | ID: mdl-26398529

RESUMO

Real-time measurements of many low-abundance volatile organic compounds (VOCs) in breath and air samples are already feasible due to progress in analytical technologies, such as proton transfer reaction mass spectrometry (PTR-MS). Nevertheless, the information content of real-time measurements is not fully exploited, due to the lack of suitable data handling methods. This study develops a data scientific procedure to enhance data analysis and interpretation of longitudinal, multivariate data sets from real-time, in vivo, aroma-release studies. The developed procedure includes an automated data preprocessing and a multivariate assessment of the test panel performance. A large multifactorial PTR-MS data set is investigated that includes four experimental protocols, two tested food products, four aroma compounds, and eight panelists. Real-time measurements are converted into standardized breath profiles by preprocessing, and 10 kinetic parameters are derived. Next to this, panel performance is evaluated per experimental protocol and food product. Comprehensive information about panel performance, individual panelists, studied products, aroma compounds, and kinetic parameters is extracted, demonstrating the great value of the developed approach.

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