ArticleEuropean journal of human genetics : EJHG2011
Motivators for participation in a whole-genome sequencing study: implications for translational genomics research.
Article in European journal of human genetics : EJHG, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 94 papers, 4 of them syntheses that pooled it.
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
94 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Demographic Characteristics Associated With Perceptions of Personal Utility in Genetic and Genomic Testing: A Systematic Review.JAMA network open · 2023Pooled it
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Personal utility in genomic testing: a systematic literature review.European journal of human genetics : EJHG · 2017Pooled it
- Retention and Evaluation of Precision and Generic Prevention Materials for Melanoma: A Qualitative Study Comparing Young Adults and Adults.Cancer prevention research (Philadelphia, Pa.) · 2022Trial
- Motivation, Perception, and Treatment Beliefs in the Myocardial Infarction Genes (MI-GENES) Randomized Clinical Trial.Journal of genetic counseling · 2017Trial
- Recommendations for return of secondary genomic findings in observational cohort studies.Nature genetics · 2026Review
- Implementing secondary findings analysis in a genetic and environmental research study.Genetics in medicine : official journal of the American College of Medical Genetics · 2025Article
- Black community member perceptions and ethics recommendations on epigenomic research.Clinical epigenetics · 2025Article
- Public awareness, attitudes, and motivation toward biobanks: a survey of China.BMC medical ethics · 2025Article
- Developing a genetic return of results service core.Journal of clinical and translational science · 2025Article
- Testing the impact of recruitment message content on open rate and consent rate for population-based genomic screening.Journal of clinical and translational science · 2025Article
- Evaluation of CTRL: a web application for dynamic consent and engagement with individuals involved in a cardiovascular genetic disorders cohort.European journal of human genetics : EJHG · 2024Article
- Lessons learned during the process of reporting individual genomic results to participants of a population-based biobank.European journal of human genetics : EJHG · 2023Article
- Factors that influence a patient's decision to engage in genetic research.Frontiers in public health · 2023Article
- Australasian Genetic Counselors' Perceptions of Their Role in Supporting Clients' Behavior Change.Journal of personalized medicine · 2022Article
- Motivations and Barriers to Participation in a Randomized Trial on Melanoma Genomic Risk: A Mixed-Methods Analysis.Journal of personalized medicine · 2022Article
- Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis.JMIR cancer · 2022Article
- Motivations and concerns of patients considering participation in an implementation study of a hereditary cancer risk assessment program in diverse primary care settings.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- "If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.New genetics and society · 2022Article
34 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
The promise of personalized medicine depends on the ability to integrate genetic sequencing information into disease risk assessment for individuals. As genomic sequencing technology enters the realm of clinical care, its scale necessitates answers to key social and behavioral research questions about the complexities of understanding, communicating, and ultimately using sequence information to improve health. Our study captured the motivations and expectations of research participants who consented to participate in a research protocol, ClinSeq, which offers to return a subset of the data generated through high-throughput sequencing. We present findings from an exploratory study of 322 participants, most of whom identified themselves as white, non-Hispanic, and coming from higher socio-economic groups. Participants aged 45-65 years answered open-ended questions about the reasons they consented to ClinSeq and about what they anticipated would come of genomic sequencing. Two main reasons for participating were as follows: a conviction to altruism in promoting research, and a desire to learn more about genetic factors that contribute to one's own health risk. Overall, participants expected genomic research to help improve understanding of disease causes and treatments. Our findings offer a first glimpse into the motivations and expectations of individuals seeking their own genomic information, and provide initial insights into the value these early adopters of technology place on information generated by high-throughput sequencing studies.
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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.