Evidence map›Paper›PMID 34155499›Full record

ReviewHuman molecular genetics2021

Three decades of genetic privacy: a metaphoric journey.

Bartha Maria Knoppers, Michael J S Beauvais

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Human molecular genetics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.

0numbers the graph read from it
0cells of the map it votes in
13citing 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

13 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
  4. Review
  5. Article
  6. Article
  7. Article
  8. Article
  9. Article
  10. Article
  11. Session Introduction: TOWARDS ETHICAL BIOMEDICAL INFORMATICS: LEARNING FROM OLELO NOEAU, HAWAIIAN PROVERBS.Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing · 2023
    Article
  12. Article
  13. 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

2 authors.

Bartha Maria KnoppersCentre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, 740 av Dr Penfield, Montreal, Quebec H3A 0G1 Canada.
Michael J S BeauvaisCentre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, 740 av Dr Penfield, Montreal, Quebec H3A 0G1 Canada.ORCID 0000-0002-8371-3836

Funding

CIHR SBD-163124
6 · The paper itself

Abstract

Debates surrounding genetic privacy have taken on different forms over the past 30 years. Taking genetic privacy to mean an interest that individuals, families, or even communities have with respect to genetic information, we examine the metaphors used in these debates to chronicle the development of genetic privacy. In 1990-2000, we examine claims for ownership and of 'humanity' spurred by the launch of the Human Genome Project and related endeavors. In 2000-2010, we analyze the interface of law and ethics with research infrastructures such as biobanks, for which notions of citizenship and 'public goods' were central. In 2010-2020, we detail the relational turn of genetic privacy in response of large international research consortia and big data. Although each decade had its leading conceptions of genetic privacy, the subject is neither strictly chronological nor static. We conclude with reflections on the nature of genetic privacy and the necessity to bring together the unique and private genetic self with the human other.

Indexed as

Ethics, ClinicalGenetic PrivacyHuman Genome ProjectHumanitiesHumansOwnership

Identifiers

PMID34155499
PMCPMC8490012

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.