ArticleAmerican journal of public health2006
Voluntary participation and informed consent to international genetic research.
Article in American journal of public health, 2006. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 44 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
44 citing papers in PubMed, 3 syntheses or guidelines pooled it, 89 citations in OpenAlex.
- Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.BMC medical ethics · 2025Pooled it
- Recruitment of Yoruba families from Nigeria for genetic research: experience from a multisite keloid study.BMC medical ethics · 2014Pooled it
- Recruiting underserved populations to dermatologic research: a systematic review.International journal of dermatology · 2011Pooled it
- Reported consent processes and demographics: a substudy of the INSIGHT Strategic Timing of AntiRetroviral Treatment (START) trial.HIV medicine · 2015Trial
- A randomized controlled trial of short and standard-length consent forms for a genetic cohort study: is longer better?Journal of epidemiology · 2012Trial
- Translating and Adapting Research Bioethical Principles to the African Socio-Cultural Contexts: An Integrative Review.African journal of bioethics · 2026Article
- COVID-19 and Challenging Working Environments: Experiences of Black Sub-Saharan African (BSSA) Front-Line Health Care Professionals Amid of COVID-19 Pandemic in the English Midlands Region.Journal of racial and ethnic health disparities · 2025Article
- Analysis of informed consent forms of patients undergoing cancer genetic testing in the era of next-generation sequencing.Hereditary cancer in clinical practice · 2025Article
- Improving prenatal diagnosis through standards and aggregation.Prenatal diagnosis · 2024Review
- Comprehension of informed consent and voluntary participation in registration cohorts for phase IIb HIV vaccine trial in Dar Es Salaam, Tanzania: a qualitative descriptive study.BMC medical ethics · 2024Article
- Hunter-gatherer genetics research: Importance and avenues.Evolutionary human sciences · 2024Article
- Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study.Research ethics · 2022Article
- Feedback of individual genetic and genomics research results: A qualitative study involving grassroots communities in Uganda.PloS one · 2022Article
- Gurus and Griots: Revisiting the research informed consent process in rural African contexts.BMC medical ethics · 2021Review
- African genetic diversity and adaptation inform a precision medicine agenda.Nature reviews. Genetics · 2021Review
- Qualitative study of comprehension of heritability in genomics studies among the Yoruba in Nigeria.BMC medical ethics · 2020Article
- Harmonization of Outcomes and Vision Endpoints in Vision Restoration Trials: Recommendations from the International HOVER Taskforce.Translational vision science & technology · 2020Article
- Big Data Privacy in Biomedical Research.IEEE transactions on big data · 2020Article
- Informed consent in genomic research and biobanking: taking feedback of findings seriously.Global bioethics = Problemi di bioetica · 2020Article
- The ethics and logistics of field-based genetic paternity studies.Evolutionary human sciences · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 1 institution in 1 country.
Funding
Abstract
objectivesWe compared voluntary participation and comprehension of informed consent among individuals of African ancestry enrolled in similarly designed genetic studies of hypertension in the United States and Nigeria.
methodsSurvey questionnaires were used to evaluate factors associated with voluntariness (the number of people volunteering) and understanding of the study's genetic purpose. A total of 655 individuals (United States: 348; Nigeria: 307) were interviewed after participation in the genetic studies.
resultsMost US respondents (99%), compared with 72% of Nigerian respondents, reported being told the study purpose. Fewer than half of the respondents at both sites reported that the study purpose was to learn about genetic inheritance of hypertension. Most respondents indicated that their participation was voluntary. In the United States, 97% reported that they could withdraw, compared with 67% in Nigeria. In Nigeria, nearly half the married women reported asking permission from husbands to enroll in the hypertension study; no respondents sought permission from local elders to participate in the study.
conclusionsOur findings highlight the need for more effective approaches and interventions to improve comprehension of consent for genetic research among ethnically and linguistically diverse populations in all settings.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.