ReviewJournal of medical ethics2005
How to handle informed consent in longitudinal studies when participants have a limited understanding of the study.
Review in Journal of medical ethics, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
14 citing papers in PubMed.
- Trial
- Participants' recall and understanding of genomic research and large-scale data sharing.Journal of empirical research on human research ethics : JERHRE · 2013Trial
- Passive Data Use for Ethical Digital Public Health Surveillance in a Postpandemic World.Journal of medical Internet research · 2022Article
- Survey of motivation to participate in a birth cohort.Journal of human genetics · 2016Article
- 'Mirroring' the ethics of biobanking: what should we learn from the analysis of consent documents[corrected]?Science and engineering ethics · 2014Article
- Informed consent in community-based oral health research.The Journal of forensic odonto-stomatology · 2014Article
- Psychometric properties of the Pediatric Testing Attitudes Scale-Diabetes (P-TAS-D) for parents of children undergoing predictive risk screening.Pediatric diabetes · 2013Article
- Parental views on informed consent for expanded newborn screening.Health expectations : an international journal of public participation in health care and health policy · 2013Article
- Behavioral Science Research Informs Bioethical Issues in the Conduct of Large-Scale Studies of Children's Disease Risk.AJOB primary research · 2013Article
- Physician-Researchers' Experiences of the Consent Process in the Sociocultural Context of a Developing Country.AJOB primary research · 2011Article
- Post-consent assessment of dental subjects' understanding of informed consent in oral health research in Nigeria.BMC medical ethics · 2009Article
- Genetic research on rare familial disorders: consent and the blurred boundaries between clinical service and research.Journal of medical ethics · 2008Article
- Securing recruitment and obtaining informed consent in minority ethnic groups in the UK.BMC health services research · 2008Article
- Ethics of Adaptive Designs for Randomized Controlled Trials.Ethics & human researchArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Empirical findings from a Swedish longitudinal screening study show that many of the research subjects had a limited understanding of the study. Nevertheless they were satisfied with the understanding they had and found it sufficient for informed continued participation. Were they wrong? In this paper, it is argued that the kind of understanding that is morally required depends partly on the kind of understanding on which the research subjects want to base their decisions, and partly on what kind of knowledge they lack. Researchers must ensure that the information process is not flawed and that participants receive the information they want. To achieve this, new information efforts may be needed. Researchers must also ensure that research subjects have knowledge about aspects of importance to them. Lack of understanding may, however, be the result of conscious choices by research subjects to disregard some of the information because it is not important to them. Such choices should normally be respected.
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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.