ArticleJournal of empirical research on human research ethics : JERHRE2016
Participants and Study Decliners' Perspectives About the Risks of Participating in a Clinical Trial of Whole Genome Sequencing.
Article in Journal of empirical research on human research ethics : JERHRE, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03276637 (The MilSeq Project), which is not on this map. Cited by 38 papers, 1 of them a synthesis 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.
The MilSeq Project: Enabling Personalized Medicine Through Exome Sequencing in the U.S. Air Force
Who cites it
38 citing papers in PubMed, 1 synthesis or guideline pooled it, 49 citations in OpenAlex.
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- The goldilocks conundrum: Disclosing discrimination risks in informed consent.Journal of genetic counseling · 2022Trial
- Reasons for Declining Preconception Expanded Carrier Screening Using Genome Sequencing.Journal of genetic counseling · 2017Trial
- The Impact of Whole-Genome Sequencing on the Primary Care and Outcomes of Healthy Adult Patients: A Pilot Randomized Trial.Annals of internal medicine · 2017Trial
- When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing.AJOB empirical bioethicsTrial
- Evaluating the Acceptability of Virtual Preventive Genetic Counseling Supporting Adult Primary Care Practices.Journal of general internal medicine · 2026Article
- Genomics and Discrimination in New Zealand Health and Life Insurance.Journal of the Royal Society of New Zealand · 2026Article
- Genetic and Conventional Risk Stratification Are Complementary for Primary Prevention of CAD.Methodist DeBakey cardiovascular journal · 2026Review
- How people undergoing genomic sequencing interpret and react to varied secondary findings with limited actionability.Personalized medicine · 2025Article
- Primary Care Providers' Experiences With an Active Elective Genetic Testing Program.Health education & behavior : the official publication of the Society for Public Health Education · 2025Article
- Genomics and insurance in the United Kingdom: increasing complexity and emerging challenges.Health economics, policy, and law · 2024Article
- Targeted long-read sequencing enriches disease-relevant genomic regions of interest to provide complete Mendelian disease diagnostics.JCI insight · 2024Article
- Pretesting Discrete-Choice Experiments: A Guide for Researchers.The patient · 2024Article
- Insights from social media into public perspectives on investigative genetic genealogy.Frontiers in genetics · 2024Article
- Factors that influence a patient's decision to engage in genetic research.Frontiers in public health · 2023Article
- The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- A Comparison of Recruitment Methods for a Prospective Cohort Study of Perinatal Psychoneuroimmunology among Black American Women.Journal of urban health : bulletin of the New York Academy of Medicine · 2021Article
- Behavioral and psychological impact of genome sequencing: a pilot randomized trial of primary care and cardiology patients.NPJ genomic medicine · 2021Article
- Polygenic risk scores in the clinic: new perspectives needed on familiar ethical issues.Genome medicine · 2021Article
- Development and Validation of a Comprehensive Genomics Knowledge Scale.Public health genomics · 2021Article
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 4 institutions in 1 country.
Funding
Abstract
An increasing number of individuals are being recruited to whole genome sequencing (WGS) research. When asked hypothetically, the majority of the public express willingness to participate in this type of research, yet little is known about how many individuals will actually consent to research participation or what they perceive the risks to be. The MedSeq Project is a clinical trial exploring WGS in clinical care. We documented primary reason(s) for declining participation and reviewed audio-recorded informed consent sessions to identify participants' concerns. Of 514 individuals recruited, 173 (34%) actively declined, 205 (40%) enrolled, and the remaining 136 (26%) were ineligible, unresponsive or waitlisted. Although the majority of active decliners cited logistical barriers, 40% cited risks related to the ethical, legal, and social implications (ELSI) of WGS research. Participants similarly discussed ELSI-related concerns but felt the potential benefits of participation outweighed the risks. Findings provide insight into the perspectives of potential WGS research participants and identify potential barriers to participation.
Indexed as
Identifiers
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.