Public expectations for return of results--time to stop being paternalistic?

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.

1. Ethical Issues in Newborn Sequencing Research: The Case Study of BabySeq.Pediatrics · 2019
   Article
2. Return of individual results in epilepsy genomic research: A view from the field.Epilepsia · 2018
   Article
3. Clinician-Stakeholders' Perspectives on Using Patient Portals to Return Lynch Syndrome Screening Results.Journal of genetic counseling · 2018
   Article
4. Return of individual genomic research results: what do consent forms tell participants?European journal of human genetics : EJHG · 2016
   Article
5. Timing and context: important considerations in the return of genetic results to research participants.Journal of community genetics · 2016
   Article
6. Ethical considerations when making exceptions to "rules" in psychiatry.Innovations in clinical neuroscience · 2014
   Article
7. Do participants in genome sequencing studies of psychiatric disorders wish to be informed of their results? A survey study.PloS one · 2014
   Article
8. Funding considerations for the disclosure of genetic incidental findings in biobank research.Clinical genetics · 2013
   Review
9. 'Information is information': a public perspective on incidental findings in clinical and research genome-based testing.Clinical genetics · 2013
   Article
10. Recommendations for ethical approaches to genotype-driven research recruitment.Human genetics · 2012
    Article
11. 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 · 2012
    Article
12. Opinions and intentions of parents of an autistic child toward genetic research results: two typical profiles.European journal of human genetics : EJHG · 2011
    Article
13. Population biobanks and returning individual research results: mission impossible or new directions?Human genetics · 2011
    Review
14. Ethical challenges in genotype-driven research recruitment.Genome research · 2010
    Article
15. Informed consent in genomics and genetic research.Annual review of genomics and human genetics · 2010
    Review
16. Prospective biorepository participants' perspectives on access to research results.Journal of empirical research on human research ethics : JERHRE · 2009
    Article
17. IRB chairs' perspectives on genotype-driven research recruitment.IRB
    Article

Corrections and comments

• Comment on
  Public expectations for return of results from large-cohort genetic research.2008

Authors and funding

1 author.

Funding

No grant is acknowledged in the PubMed record.

Abstract

PubMed holds no abstract for this paper.

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