Evidence map›Paper›PMID 38306053›Full record

ReviewJournal of Alzheimer's disease : JAD2024

The Return of Biomarker Results in Research: Balancing Complexity, Precision, and Ethical Responsibility.

Julie M Robillard, Mario Masellis, Susanna E Martin, Ara S Khachaturian, Roger A Dixon

Abstract readReview
In one paragraph

Review in Journal of Alzheimer's disease : JAD, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

11 citing papers in PubMed.

  1. Return of Research Results to Participants in Longitudinal Cohort Studies in Health Research: Findings From 24 Cohorts of the Amsterdam Cohort Hub.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  2. Review
  3. Article
  4. Article
  5. Article
  6. Review
  7. Article
  8. Article
  9. Article
  10. Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Article
  11. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Julie M RobillardDepartment of Medicine, Division of Neurology, University of British Columbia, Vancouver, BC, Canada.
Mario MasellisDivision of Neurology, Department of Medicine, Sunnybrook Health Sciences Centre, Toronto, ON, Canada.
Susanna E MartinDepartment of Medicine, Division of Neurology, University of British Columbia, Vancouver, BC, Canada.
Ara S KhachaturianThe Campaign to Prevent Alzheimer's Disease 2020, Inc. Rockville, MD, USA.
Roger A DixonDepartment of Psychology, Faculty of Science, University of Alberta, Edmonton, AB, Canada.

Funding

CIHR
6 · The paper itself

Abstract

Recent research aimed at the discovery, integration, and communication of health outcome measures (or "biomarkers") in Alzheimer's disease has raised challenging questions related to whether, how and when results from these investigations should be disclosed to research participants. Reflecting the apparent heterogeneity of many neurodegenerative diseases, biomarker or other risk factor results are often probabilistic, interactive, multi-modal, and selective. Such characteristics make it very complex to summarize and communicate to clinicians, researchers, and research participants. Whereas the format and content of academic literature is well-managed by the peer-review process, reporting individualized results to participants involves complex, sensitive, and ethical considerations. This paper describes three key factors to consider in decisions about the return of results to research participants: complexity, precision, and responsibility. The paper also presents six practical recommendations for implementing meaningful and ethical communication with research participants.

Indexed as

Alzheimer DiseaseBiomarkersHumansBiomarkersAlzheimer’s diseasebiomarkersdementiadisclosureethics

Identifiers

PMID38306053
PMCPMC10836546

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

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.