Evidence map›Paper›PMID 38549845›Full record

ReviewCambridge prisms. Precision medicine2024

The ethical challenges of diversifying genomic data: A qualitative evidence synthesis.

Faranak Hardcastle, Kate Lyle, Rachel Horton, Gabrielle Samuel, Susie Weller, Lisa Ballard, Rachel Thompson, Luiz Valerio De Paula Trindade, José David Gómez Urrego, Daniel Kochin and 11 more

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Cambridge prisms. Precision medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing 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

8 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
  4. Article
  5. Article
  6. Article
  7. Article
  8. Review
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

21 authors.

Faranak HardcastleClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.ORCID https://orcid.org/0000-0003-4629-9557
Kate LyleClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.
Rachel HortonClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.ORCID https://orcid.org/0000-0001-6080-6354
Gabrielle SamuelClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.
Susie WellerClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.
Lisa BallardClinical Ethics, Law and Society (CELS), The NIHR Southampton Biomedical Research Centre, University of Southampton, Southampton, UK.
Rachel ThompsonClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.
Luiz Valerio De Paula TrindadeClinical Ethics, Law and Society (CELS), The NIHR Southampton Biomedical Research Centre, University of Southampton, Southampton, UK.
José David Gómez UrregoClinical Ethics, Law and Society (CELS), The NIHR Southampton Biomedical Research Centre, University of Southampton, Southampton, UK.
Daniel KochinClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.
Tess JohnsonClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.
Nechama Tatz-WiederBig Data Institute, University of Oxford, Oxford, UK.
Elizabeth Redrup HillPHG Foundation, University of Cambridge, Cambridge, UK.
Florence Robinson AdamsClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.
Yoseph EskandarClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.
Eli HarrissBodleian Health Care Libraries, University of Oxford, Oxford, UK.
Krystal S TsosieArizona State University, Tempe, AZ, USA.
Padraig DixonClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.
Maxine MackintoshGenomics England Ltd, London, UK.
Lyra NightingaleGenomics England Ltd, London, UK.
Anneke LucassenClinical Ethics, Law and Society group (CELS), and Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.ORCID https://orcid.org/0000-0003-3324-4338

Funding

Wellcome Trust
6 · The paper itself

Abstract

This article aims to explore the ethical issues arising from attempts to diversify genomic data and include individuals from underserved groups in studies exploring the relationship between genomics and health. We employed a qualitative synthesis design, combining data from three sources: 1) a rapid review of empirical articles published between 2000 and 2022 with a primary or secondary focus on diversifying genomic data, or the inclusion of underserved groups and ethical issues arising from this, 2) an expert workshop and 3) a narrative review. Using these three sources we found that ethical issues are interconnected across structural factors and research practices. Structural issues include failing to engage with the politics of knowledge production, existing inequities, and their effects on how harms and benefits of genomics are distributed. Issues related to research practices include a lack of reflexivity, exploitative dynamics and the failure to prioritise meaningful co-production. Ethical issues arise from both the structure and the practice of research, which can inhibit researcher and participant opportunities to diversify data in an ethical way. Diverse data are not ethical in and of themselves, and without being attentive to the social, historical and political contexts that shape the lives of potential participants, endeavours to diversify genomic data run the risk of worsening existing inequities. Efforts to construct more representative genomic datasets need to develop ethical approaches that are situated within wider attempts to make the enterprise of genomics more equitable.

Indexed as

data scienceethicsgenomicspersonalised medicineprecision medicine

Identifiers

PMID38549845
PMCPMC10953735

What OpenQuestion holds

Textmetadata
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.