Evidence map›Paper›PMID 40373741›Full record

ArticleCell genomics2025

Ethics choices during the Human Genome Project reflected their policy world, not ours.

Jonathan E LoTempio, Christopher R Donohue, Jonathan D Moreno, Robert Cook-Deegan

Abstract readHistorical Article
In one paragraph

Article in Cell genomics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. 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

4 authors.

Jonathan E LoTempioUniversity of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA. Electronic address: lotempio@upenn.edu.
Christopher R DonohueNational Human Genome Research Institute, Bethesda, MD, USA.
Jonathan D MorenoUniversity of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.
Robert Cook-DeeganArizona State University School for the Future of Innovation in Society, Tempe, AZ, USA.

Funding

Center for Human Genome Reference DiversityUM1HG010971 · NHGRI · UNIVERSITY OF CALIFORNIA SANTA CRUZ · PI Robert Mullan Cook-Deegan, Evan Eichler · 2024 to 2026
$8.6M
The Penn Postdoctoral Training Program in the Ethical, Legal and Social Implications of Genetics and GenomicsT32HG009496 · NHGRI · UNIVERSITY OF PENNSYLVANIA · PI Steven Joffe · 2017 to 2026
$3.4M
NHGRI NIH HHS T32 HG009496NHGRI NIH HHS UM1 HG010971
6 · The paper itself

Abstract

Since human genomic data produced in the 1990s are still a significant part of the reference genome, decades-old decisions pertinent to the creation of these data persist. Here, we discuss how historical documents illustrate the 1990s policy and legal environment and how they affected ethical choices in the Human Genome Project (HGP). These documents inform current controversies about informed consent and how IRBs review similar protocols today. Finally, we discuss how this informs active work in large reference pangenome efforts.

Indexed as

Consent FormsGenetic PrivacyHuman Genome ProjectConfidentialityEthics Committees, ResearchHistory, 20th CenturyHumans

Identifiers

PMID40373741
PMCPMC12143320

What OpenQuestion holds

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LicenceCC BY
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.