Evidence map›Paper›PMID 30994073›Full record

ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2019

BRCA1/2 Variant Data-Sharing Practices.

Juli M Bollinger, Abhi Sanka, Lena Dolman, Rachel G Liao, Robert Cook-Deegan

Abstract read
In one paragraph

Article in The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Article
  2. Physician-reported patient involvement and treatment decisions in first-line ovarian cancer in the USA and Europe.International journal of gynecological cancer : official journal of the International Gynecological Cancer Society · 2024
    Article
  3. 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.

Juli M BollingerJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Abhi Sanka is a Science Policy Fellow at the Science and Technology Policy Institute. He was formerly a Research Associate at the School for the Future of Innovation in Society at Arizona State University. Lena Dolman, M.S., is currently a medical student at McMaster University, Hamilton, Ontario, Canada. She was formerly a manager of Strategy and Outreach, as well as manager of the Clinical & Phenotypic Data Capture Work Stream, for the Global Alliance for Genomics and Health. Rachel G. Liao, Ph.D., is a Scientific Advisor to the Director at the Broad Institute of MIT and Harvard. She was formerly a manager for the Global Alliance for Genomics and Health, where she led the successful launch and growth of the BRCA Challenge project and its foundational product, the BRCA Exchange. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU.
Abhi SankaJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Abhi Sanka is a Science Policy Fellow at the Science and Technology Policy Institute. He was formerly a Research Associate at the School for the Future of Innovation in Society at Arizona State University. Lena Dolman, M.S., is currently a medical student at McMaster University, Hamilton, Ontario, Canada. She was formerly a manager of Strategy and Outreach, as well as manager of the Clinical & Phenotypic Data Capture Work Stream, for the Global Alliance for Genomics and Health. Rachel G. Liao, Ph.D., is a Scientific Advisor to the Director at the Broad Institute of MIT and Harvard. She was formerly a manager for the Global Alliance for Genomics and Health, where she led the successful launch and growth of the BRCA Challenge project and its foundational product, the BRCA Exchange. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU.
Lena DolmanJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Abhi Sanka is a Science Policy Fellow at the Science and Technology Policy Institute. He was formerly a Research Associate at the School for the Future of Innovation in Society at Arizona State University. Lena Dolman, M.S., is currently a medical student at McMaster University, Hamilton, Ontario, Canada. She was formerly a manager of Strategy and Outreach, as well as manager of the Clinical & Phenotypic Data Capture Work Stream, for the Global Alliance for Genomics and Health. Rachel G. Liao, Ph.D., is a Scientific Advisor to the Director at the Broad Institute of MIT and Harvard. She was formerly a manager for the Global Alliance for Genomics and Health, where she led the successful launch and growth of the BRCA Challenge project and its foundational product, the BRCA Exchange. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU.
Rachel G LiaoJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Abhi Sanka is a Science Policy Fellow at the Science and Technology Policy Institute. He was formerly a Research Associate at the School for the Future of Innovation in Society at Arizona State University. Lena Dolman, M.S., is currently a medical student at McMaster University, Hamilton, Ontario, Canada. She was formerly a manager of Strategy and Outreach, as well as manager of the Clinical & Phenotypic Data Capture Work Stream, for the Global Alliance for Genomics and Health. Rachel G. Liao, Ph.D., is a Scientific Advisor to the Director at the Broad Institute of MIT and Harvard. She was formerly a manager for the Global Alliance for Genomics and Health, where she led the successful launch and growth of the BRCA Challenge project and its foundational product, the BRCA Exchange. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU.
Robert Cook-DeeganJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Abhi Sanka is a Science Policy Fellow at the Science and Technology Policy Institute. He was formerly a Research Associate at the School for the Future of Innovation in Society at Arizona State University. Lena Dolman, M.S., is currently a medical student at McMaster University, Hamilton, Ontario, Canada. She was formerly a manager of Strategy and Outreach, as well as manager of the Clinical & Phenotypic Data Capture Work Stream, for the Global Alliance for Genomics and Health. Rachel G. Liao, Ph.D., is a Scientific Advisor to the Director at the Broad Institute of MIT and Harvard. She was formerly a manager for the Global Alliance for Genomics and Health, where she led the successful launch and growth of the BRCA Challenge project and its foundational product, the BRCA Exchange. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU.

Funding

Building the Medical Information Commons: Participant Engagement and PolicyR01HG008918 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI COOK-DEEGAN, ROBERT MULLAN, MCGUIRE, AMY L · 2015 to 2017
$2.4M
NHGRI NIH HHS R01 HG008918
6 · The paper itself

Abstract

Accessing BRCA1/2 data facilitates the detection of disease-associated variants, which is critical to informing clinical management of risks. BRCA1/2 data sharing is complex and many practices exist. We describe current BRCA1/2 data-sharing practices, in the United States and globally, and discuss obstacles and incentives to sharing, based on 28 interviews with personnel at U.S. and non-U.S. clinical laboratories and databases. Our examination of the BRCA1/2 data-sharing landscape demonstrates strong support for and robust sharing of BRCA1/2 data around the world, increasing global accesses to diverse data sets.

Indexed as

Databases, GeneticBRCA1 ProteinBRCA2 ProteinGenetic TestingHumansInformation DisseminationInternationalityLaboratoriesUnited StatesBRCA1 ProteinBRCA1 protein, humanBRCA2 ProteinBRCA2 protein, human

Identifiers

PMID30994073
PMCPMC6748872

What OpenQuestion holds

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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.