ArticleEuropean journal of human genetics : EJHG2016
Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project.
Article in European journal of human genetics : EJHG, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 59 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.
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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
59 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Barriers and Facilitators for Population Genetic Screening in Healthy Populations: A Systematic Review.Frontiers in genetics · 2022Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled 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
- Elective genomic sequencing for adults in research, clinical and commercial contexts.BMC medical genomics · 2026Article
- Evaluating the Acceptability of Virtual Preventive Genetic Counseling Supporting Adult Primary Care Practices.Journal of general internal medicine · 2026Article
- Elective genomic sequencing for adults in research, clinical and commercial contexts.medRxiv : the preprint server for health sciences · 2026Article
- Adolescents' and young adults' reactions to and perceived utility of carrier screening results in the context of a genomic research study.Journal of genetic counseling · 2025Article
- How people undergoing genomic sequencing interpret and react to varied secondary findings with limited actionability.Personalized medicine · 2025Article
- Research participants' perspectives regarding the feedback of secondary findings-A cohort from the DDD-Africa study, South Africa.Journal of genetic counseling · 2024Article
- Publics' knowledge of, attitude to and motivation towards health-related genomics: a scoping review.European journal of human genetics : EJHG · 2024Article
- Balancing the safeguarding of privacy and data sharing: perceptions of genomic professionals on patient genomic data ownership in Australia.European journal of human genetics : EJHG · 2024Article
- 'Research ethics · 2024Article
- Challenges and solutions to system-wide use of precision oncology as the standard of care paradigm.Cambridge prisms. Precision medicine · 2024Review
- Medical and psychosocial outcomes of state-funded population genomic screening.Clinical genetics · 2023Article
- Article
- Motivations and Barriers to Participation in a Randomized Trial on Melanoma Genomic Risk: A Mixed-Methods Analysis.Journal of personalized medicine · 2022Article
- Establishing the Medical Actionability of Genomic Variants.Annual review of genomics and human genetics · 2022Review
- Willingness to participate in various nontherapeutic cancer research activities among urban and rural African American and Latinx healthy volunteers.Cancer causes & control : CCC · 2022Article
- Perspectives of diverse Spanish- and English-speaking patients on the clinical use of polygenic risk scores.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
Corrections and comments
- Erratum issued
Authors and funding
9 authors.
Funding
Abstract
Whole exome/genome sequencing (WES/WGS) is increasingly offered to ostensibly healthy individuals. Understanding the motivations and concerns of research participants seeking out personal WGS and their preferences regarding return-of-results and data sharing will help optimize protocols for WES/WGS. Baseline interviews including both qualitative and quantitative components were conducted with research participants (n=35) in the HealthSeq project, a longitudinal cohort study of individuals receiving personal WGS results. Data sharing preferences were recorded during informed consent. In the qualitative interview component, the dominant motivations that emerged were obtaining personal disease risk information, satisfying curiosity, contributing to research, self-exploration and interest in ancestry, and the dominant concern was the potential psychological impact of the results. In the quantitative component, 57% endorsed concerns about privacy. Most wanted to receive all personal WGS results (94%) and their raw data (89%); a third (37%) consented to having their data shared to the Database of Genotypes and Phenotypes (dbGaP). Early adopters of personal WGS in the HealthSeq project express a variety of health- and non-health-related motivations. Almost all want all available findings, while also expressing concerns about the psychological impact and privacy of their results.
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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.