ArticlePublic health genomics2012
Motivations and perceptions of early adopters of personalized genomics: perspectives from research participants.
Article in Public health genomics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 95 papers, 3 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
95 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review.Journal of medical Internet research · 2015Pooled it
- Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.PloS one · 2014Pooled it
- Direct-to-consumer genomic testing: systematic review of the literature on user perspectives.European journal of human genetics : EJHG · 2012Pooled it
- Outcomes of a Randomized Controlled Trial of Genomic Counseling for Patients Receiving Personalized and Actionable Complex Disease Reports.Journal of genetic counseling · 2017Trial
- Motivation, Perception, and Treatment Beliefs in the Myocardial Infarction Genes (MI-GENES) Randomized Clinical Trial.Journal of genetic counseling · 2017Trial
- Interest and informational preferences regarding genomic testing for modest increases in colorectal cancer risk.Public health genomics · 2014Trial
- Disclosure of genetic information and change in dietary intake: a randomized controlled trial.PloS one · 2014Trial
- Public knowledge of and attitudes toward genetics and genetic testing.Genetic testing and molecular biomarkers · 2013Trial
- Clinical translation of polygenic scores for prostate cancer screening.Nature reviews. Urology · 2026Review
- Acceptability, consideration, intention, and uptake of six common types of direct-to-consumer genetic tests in the Netherlands.Journal of genetic counseling · 2025Article
- Motivations, perceptions and impacts of direct-to-consumer genetic testing among users in Brazil.Journal of community genetics · 2025Article
- The case for integrating genetic counselors into primary care: A paradigm shift for our profession.Journal of genetic counseling · 2025Article
- Attitudes, knowledge, and risk perceptions of patients who received elective genomic testing as a clinical service.Genetics in medicine : official journal of the American College of Medical Genetics · 2024Article
- Donor-Derived Malignancy and Transplantation Morbidity: Risks of Patient and Donor Genetics in Allogeneic Hematopoietic Stem Cell Transplantation.Transplantation and cellular therapy · 2024Review
- A qualitative study exploring the consumer experience of receiving self-initiated polygenic risk scores from a third-party website.European journal of human genetics : EJHG · 2023Article
- Article
- On the determinants and the role of the payers in the uptake of genetic testing and data sharing in personalized health.Frontiers in public health · 2023Article
- Public Health Genomics: Time to Sharpen the Focus.Public health genomics · 2023Article
- FarGen - participants in the genetic research infrastructure of the Faroe Islands.Scandinavian journal of public health · 2022Article
- Attitudes Toward Glaucoma Genetic Risk Assessment in Unaffected Individuals.Translational vision science & technology · 2022Article
35 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
8 authors.
Funding
Abstract
BACKGROUND/
aimsTo predict the potential public health impact of personal genomics, empirical research on public perceptions of these services is needed. In this study, 'early adopters' of personal genomics were surveyed to assess their motivations, perceptions and intentions.
methodsParticipants were recruited from everyone who registered to attend an enrollment event for the Coriell Personalized Medicine Collaborative, a United States-based (Camden, N.J.) research study of the utility of personalized medicine, between March 31, 2009 and April 1, 2010 (n = 369). Participants completed an Internet-based survey about their motivations, awareness of personalized medicine, perceptions of study risks and benefits, and intentions to share results with health care providers.
resultsRespondents were motivated to participate for their own curiosity and to find out their disease risk to improve their health. Fewer than 10% expressed deterministic perspectives about genetic risk, but 32% had misperceptions about the research study or personal genomic testing. Most respondents perceived the study to have health-related benefits. Nearly all (92%) intended to share their results with physicians, primarily to request specific medical recommendations.
conclusionEarly adopters of personal genomics are prospectively enthusiastic about using genomic profiling information to improve their health, in close consultation with their physicians. This suggests that early users (i.e. through direct-to-consumer companies or research) may follow up with the health care system. Further research should address whether intentions to seek care match actual behaviors.
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.