Evidence map›Paper›PMID 27681358›Full record

ReviewAnnals of the New York Academy of Sciences2017

Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States.

Shuang Wang, Xiaoqian Jiang, Siddharth Singh, Rebecca Marmor, Luca Bonomi, Dov Fox, Michelle Dow, Lucila Ohno-Machado

Abstract readReview
In one paragraph

Review in Annals of the New York Academy of Sciences, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers.

0numbers the graph read from it
0cells of the map it votes in
35citing 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

35 citing papers in PubMed.

  1. Article
  2. Review
  3. Review
  4. Article
  5. Review
  6. Article
  7. Review
  8. Aging precisely: Precision medicine through the lens of an older adult.Journal of the American Geriatrics Society · 2024
    Review
  9. Review
  10. Article
  11. Review
  12. Article
  13. Review
  14. Article
  15. Article
  16. Review
  17. Article
  18. Identifying individuals using proteomics: are we there yet?Frontiers in molecular biosciences · 2022
    Review
  19. Article
  20. 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

8 authors.

Shuang WangDepartment of Biomedical Informatics, University of California San Diego, La Jolla, California.
Xiaoqian JiangDepartment of Biomedical Informatics, University of California San Diego, La Jolla, California.
Siddharth SinghDepartment of Biomedical Informatics, University of California San Diego, La Jolla, California.
Rebecca MarmorDepartment of Biomedical Informatics, University of California San Diego, La Jolla, California.
Luca BonomiDepartment of Biomedical Informatics, University of California San Diego, La Jolla, California.
Dov FoxSchool of Law, University of San Diego, San Diego, California.
Michelle DowDepartment of Biomedical Informatics, University of California San Diego, La Jolla, California.
Lucila Ohno-MachadoDepartment of Biomedical Informatics, University of California San Diego, La Jolla, California.

Funding

UC San Diego Clinical and Translational Research InstituteUL1TR001442 · NCATS · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI FIRESTEIN, GARY S, HOGARTH, MICHAEL · 2015 to 2024
$88.3M
iDASH: Integrating Data for Analysis, Anonymization, and SharingU54HL108460 · NHLBI · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI OHNO-MACHADO, LUCILA · 2010 to 2015
$19.1M
San Diego Biomedical Informatics Education & Research (SABER)T15LM011271 · NLM · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI SHAMIM NEMATI · 2012 to 2026
$9.7M
Protection of Records: Privacy (PReP) Technology for Medical ResearchR00LM011392 · NLM · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI JIANG, XIAOQIAN · 2013 to 2015
$650k
Protecting the pRivacy Of Genomes in REsearch StudieS (PROGRESS)R00HG008175 · NHGRI · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI WANG, SHUANG · 2016 to 2018
$527k
Protect Privacy of Healthcare Data in the CloudR21LM012060 · NLM · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI JIANG, XIAOQIAN · 2014 to 2015
$376k
NCATS NIH HHS UL1 TR001442NHGRI NIH HHS R00 HG008175NHLBI NIH HHS U54 HL108460NLM NIH HHS R00 LM011392NLM NIH HHS R21 LM012060NLM NIH HHS T15 LM011271
6 · The paper itself

Abstract

Accessing and integrating human genomic data with phenotypes are important for biomedical research. Making genomic data accessible for research purposes, however, must be handled carefully to avoid leakage of sensitive individual information to unauthorized parties and improper use of data. In this article, we focus on data sharing within the scope of data accessibility for research. Current common practices to gain biomedical data access are strictly rule based, without a clear and quantitative measurement of the risk of privacy breaches. In addition, several types of studies require privacy-preserving linkage of genotype and phenotype information across different locations (e.g., genotypes stored in a sequencing facility and phenotypes stored in an electronic health record) to accelerate discoveries. The computer science community has developed a spectrum of techniques for data privacy and confidentiality protection, many of which have yet to be tested on real-world problems. In this article, we discuss clinical, technical, and ethical aspects of genome data privacy and confidentiality in the United States, as well as potential solutions for privacy-preserving genotype-phenotype linkage in biomedical research.

Indexed as

Genetic PrivacyComputational BiologyComputer SecurityData MiningGenomicsHumansInformed ConsentMedical Record LinkageRisk ManagementUnited Statesethicsgenome privacy and confidentialityprivacy lawrecord linkage

Identifiers

PMID27681358
PMCPMC5266631

What OpenQuestion holds

Textmetadata
LicenceTDM
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.