Cohort Profile: The Mexico City Prospective Study

Tapia-Conyer, Roberto; Kuri‐Morales, Pablo; Alegre-Díaz, Jesús; Whitlock, Gary; Emberson, Jonathan; Clark, Sarah L.; Pető, Richárd; Collins, Rory

doi:10.1093/ije/dyl042

Cited by 64 publications

(82 citation statements)

References 4 publications

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“…Several studies highlight national and organizational context as important features of biobank support [19,30,59]. Cultural differences are bound to increase when we consider new biobanks in, for example, China [60], The Gambia [61], Japan [62], India [63], Mexico [64], and Taiwan [65]. Familial obligations, gender issues, economic circumstances, and expectations of healthcare delivery through research participation are all issues which can be expected to be viewed differently, but factors we know very little about.…”

Section: Consent and Re-consent: One Size Fits All?mentioning

confidence: 99%

Donors Perceptions of Consent to and Feedback from Biobank Research: Time to Acknowledge Diversity?

Hoeyer

2009

Public Health Genomics

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Background: Many studies have explored public perspectives on when and how to provide informed consent to biobank research and when to get feedback on research results. Little has been done to explore overarching trends in these studies. Methods: The article is based on a critical reading of the literature found through Medline searches and the PRIVILEGED project compilation of empirical studies. Results: I suggest that tissue type, procurement situation including who is asked to provide consent, and the biobank’s geographical, social and historical context influence how various potential donors view the issues of consent, re-consent, and feedback of research results. In light of this, universal ethical standards for informed consent to and feedback of research results from biobank research seem to run contrary to the diversity of perceptions and expectations among different donors. Conclusion: To respect donor interests, it is necessary to pay more attention to diversity with regard to biobank types and different contexts for donation. We should avoid assuming that words like ‘biobank’ and ‘donor’ can be used in a generic sense – always referring to the same – if we wish to respect and care for the diverse group of individuals who comprise the donating public.

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Section: Consent and Re-consent: One Size Fits All?mentioning

confidence: 99%

Donors Perceptions of Consent to and Feedback from Biobank Research: Time to Acknowledge Diversity?

Hoeyer

2009

Public Health Genomics

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“…And the people that biobanks seek to help rarely involve the poorest of the poor in lowincome countries, though a few exceptions do of course exist. [87][88][89] Besides sharing of medical benefits, the sharing of potential financial benefits is a pertinent issue. 90 The actual size of financial benefits is contested and only limited amounts of evidence are publically available.…”

Section: Ethical Issuesmentioning

confidence: 99%

Size matters: the ethical, legal, and social issues surrounding large-scale genetic biobank initiatives

Hoeyer¹

2012

Nor J Epidemiol

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During the past ten years the complex ethical, legal and social issues (ELSI) typically surrounding large-scale genetic biobank research initiatives have been intensely debated in academic circles. In many ways genetic epidemiology has undergone a set of changes resembling what in physics has been called a transition into Big Science. This article outlines consequences of this transition and suggests that the change in scale implies challenges to the roles of scientists and public alike. An overview of key issues is presented, and it is argued that biobanks represent not just scientific endeavors with purely epistemic objectives, but also political projects with social implications. As such, they demand clever maneuvering among social interests to succeed.

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“…Successful cohort studies exploring risk factors produce more robust results ascertaining causation with influential outputs due to their dimension and data richness [6–9], and illustrate the benefit of country–specific data for specialised intervention programs [10]. In low resource settings, India, China and Mexico have succeeded in establishing large scale cohort studies [6–8]. However, several low resource settings have restricted disease diagnostic infrastructure or death notification so the capacity to establish cohort studies is limited.…”

mentioning

confidence: 99%

“…On the other hand, the World Health Organization STEPwise approach focuses on collecting consistent data between and within countries with flexibility of use across all settings, including low resource settings, and collected using standardised tools to measure eight behavioural and biological NCD risk factors [9]. In addition, there are a number of multicentre national projects using similar principles of harmonisation and standardisation from which we saw the progression to online project management and increased flexibility in survey content to improve data collection [6–8]. However, large–scale projects are resource intensive and the data collection tools are often lengthy and context specific.…”

mentioning

confidence: 99%

Developing the environmental and lifestyle exposure assessment (ELEA) tool for cancer epidemiology research in low resource settings

Feletto¹,

Schüz²,

Sitas³

2016

Journal of Global Health

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Cohort Profile: The Mexico City Prospective Study

Cited by 64 publications

References 4 publications

Donors Perceptions of Consent to and Feedback from Biobank Research: Time to Acknowledge Diversity?

Donors Perceptions of Consent to and Feedback from Biobank Research: Time to Acknowledge Diversity?

Size matters: the ethical, legal, and social issues surrounding large-scale genetic biobank initiatives

Developing the environmental and lifestyle exposure assessment (ELEA) tool for cancer epidemiology research in low resource settings

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