ArticleJournal of medical ethics2005
Informed consent, participation in, and withdrawal from a population based cohort study involving genetic analysis.
Article 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 24 papers.
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
24 citing papers in PubMed.
- Participant-reported personal utility of genetic testing for Parkinson's disease and interest in clinical trial participation.NPJ Parkinson's disease · 2024Article
- Factors that influence a patient's decision to engage in genetic research.Frontiers in public health · 2023Article
- An Idealized Clinicogenomic Registry to Engage Underrepresented Populations Using Innovative Technology.Journal of personalized medicine · 2022Article
- Consent for Use of Genetic Data among US Hispanics/Latinos: Results from the Hispanic Community Health Study/ Study of Latinos.Ethnicity & disease · 2021Article
- Pilot study to establish a prospective neonatal cohort: Study of Preterm Infants and Neurodevelopmental Genes (SPRING).BMJ paediatrics open · 2020Article
- Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age.Frontiers in genetics · 2020Article
- Inclusion of special populations in clinical research: important considerations and guidelines.Journal of clinical and translational research · 2018Article
- Recruitment and Participation of Recreational Runners in a Large Epidemiological and Genetic Research Study: Retrospective Data Analysis.JMIR research protocols · 2018Article
- Reducing attrition within clinical trials: The communication of retention and withdrawal within patient information leaflets.PloS one · 2018Article
- Cost and yield considerations when expanding recruitment for genetic studies: the primary open-angle African American glaucoma genetics study.BMC medical research methodology · 2017Article
- Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.BMC medical ethics · 2017Article
- Genetic research participation in a young adult community sample.Journal of community genetics · 2014Article
- Patient characteristics and participation in a genetic study: a type 2 diabetes cohort.Journal of investigative medicine : the official publication of the American Federation for Clinical Research · 2014Article
- How are European birth-cohort studies engaging and consulting with young cohort members?BMC medical research methodology · 2013Article
- Characteristics of Australian cohort study participants who do and do not take up an additional invitation to join a long-term biobank: The 45 and Up Study.BMC research notes · 2012Article
- Consent for use of clinical leftover biosample: a survey among Chinese patients and the general public.PloS one · 2012Article
- Reflexive research ethics in fetal tissue xenotransplantation research.Accountability in research · 2012Article
- Frequencies of glutathione s-transferase (GSTM1, GSTM3 AND GSTT1) polymorphisms in a Malaysian population.Archives of medical science : AMS · 2011Article
- Factors influencing patient willingness to participate in genetic research after a myocardial infarction.Genome medicine · 2011Article
- Effect of ethnicity, gender and drug use history on achieving high rates of affirmative informed consent for genetics research: impact of sharing with a national repository.Journal of medical ethics · 2011Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivePopulation based cohort studies involving genetic research have been initiated in several countries. However, research published to date provides little information on the willingness of the general population to participate in such studies. Furthermore, there is a need to discover the optimal methods for acquiring fully informed consent from the general population. We therefore examined the results of a population based genetic cohort study to identify the factors affecting the participation rate by members of the general public and also specifically to examine the impact of different consent procedures on the rate of participation by prospective candidates and their subsequent withdrawal rate from the study.
designDescriptive analyses. SETTING AND
participantsThe study evaluated two non-genetic subcohorts comprising 3166 people attending for a health checkup during 2002, and two genetic subcohorts comprising 2195 people who underwent a checkup during 2003. MAIN OUTCOME MEASUREMENTS: Analysis endpoints were differences in participation rates between the non-genetic and genetic subcohorts, differences between providing non-extensive and extensive preliminary information, and changes in participation status between baseline and at 6 months.
resultsParticipation rates in the genetic subcohorts were 4.7-9.3% lower than those in the non-genetic subcohorts. The odds ratios (OR) of participation in genetic research were between 0.60 and 0.77, and the OR for withdrawal from the research was over 7.70; providing preliminary extensive information about genetic research reduced the withdrawal risks (OR 0.15 for all dependent variables) but worsened participation rates (OR 0.63-0.74).
conclusionsThe general population responded sceptically towards genetic research. It is crucial that genetic researchers utilise an informative and educational consent process worthy of public trust.
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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.