ReviewHuman genetics2011
Population biobanks and returning individual research results: mission impossible or new directions?
Review in Human genetics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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
17 citing papers in PubMed, 38 citations in OpenAlex.
- The Impact of Research Results Feedback on the Lived Experiences of Elderly Participants in the DIMAMO Health Demographic Site: A Case of AWI-Gen Participants.International journal of environmental research and public health · 2025Article
- Researchers' perspectives on return of individual genetics results to research participants: a qualitative study.Global bioethics = Problemi di bioetica · 2021Article
- Returning Individual Genetic Research Results to Research Participants: Uptake and Outcomes Among Patients With Breast Cancer.JCO precision oncology · 2018Article
- Public Understanding and Opinions regarding Genetic Research on Alzheimer's Disease.Public health genomics · 2018Article
- Population-based biobank participants' preferences for receiving genetic test results.Journal of human genetics · 2017Article
- Effect of Genetic Information Regarding Salt-Sensitive Hypertension on the Intent to Maintain a Reduced Salt Diet: Implications for Health Communication in Japan.Journal of clinical hypertension (Greenwich, Conn.) · 2017Article
- Public preferences for the return of research results in genetic research: a conjoint analysis.Genetics in medicine : official journal of the American College of Medical Genetics · 2014Article
- Returning findings within longitudinal cohort studies: the 1958 birth cohort as an exemplar.Emerging themes in epidemiology · 2014Article
- Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study.Journal of community genetics · 2013Article
- Risk terminology in biobanking and genetic research: what's in a name?American journal of medical genetics. Part A · 2013Article
- Population studies: return of research results and incidental findings Policy Statement.European journal of human genetics : EJHG · 2013Article
- Biobanking past, present and future: responsibilities and benefits.AIDS (London, England) · 2013Review
- Attitudes of African-American parents about biobank participation and return of results for themselves and their children.Journal of medical ethics · 2012Article
- Managing incidental findings and research results in genomic research involving biobanks and archived data sets.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- The art and science of biobanking.Human genetics · 2011Article
- DiseaseComps: a metric that discovers similar diseases based upon common toxicogenomic profiles at CTD.Bioinformation · 2011Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Historically, large-scale longitudinal genomic research studies have not returned individual research results to their participants, as these studies are not intended to find clinically significant information for individuals, but to produce 'generalisable' knowledge for future research. However, this stance is now changing. Commentators now argue that there is an ethical imperative to return clinically significant results and individuals are now expressing a desire to have them. This shift reflects societal changes, such as the rise of social networking and an increased desire to participate in medical decision-making, as well as a greater awareness of genetic information and the increasing ability of clinicians to use this information in health care treatment. This paper will discuss the changes that have prompted genomic research studies to reconsider their position and presents examples of projects that are actively engaged in returning individual research results.
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.