Evidence map›Paper›PMID 31160753›Full record

ReviewGenetics in medicine : official journal of the American College of Medical Genetics2019

Improving recommendations for genomic medicine: building an evolutionary process from clinical practice advisory documents to guidelines.

Wylie Burke, Ellen Wright Clayton, Susan M Wolf, Susan A Berry, Barbara J Evans, James P Evans, Ralph Hall, Diane Korngiebel, Anne-Marie Laberge, Bonnie S LeRoy and 1 more

Abstract readReview
In one paragraph

Review in Genetics in medicine : official journal of the American College of Medical Genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing 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

7 citing papers in PubMed.

  1. Article
  2. Physician services and costs after disclosure of diagnostic sequencing results in the NYCKidSeq program.Genetics in medicine : official journal of the American College of Medical Genetics · 2024
    Article
  3. "Choice of law" in precision medicine research.American journal of human genetics · 2022
    Review
  4. Review
  5. Exome sequencing compared with standard genetic tests for critically ill infants with suspected genetic conditions.Genetics in medicine : official journal of the American College of Medical Genetics · 2020
    Article
  6. From Genetics to Genomics: Facing the Liability Implications in Clinical Care.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020
    Article
  7. How Can Law and Policy Advance Quality in Genomic Analysis and Interpretation for Clinical Care?The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020
    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

11 authors.

Wylie BurkeDepartment of Bioethics and Humanities, University of Washington, Seattle, WA, USA. wburke@uw.edu.ORCID http://orcid.org/0000-0003-2914-0560
Ellen Wright ClaytonDepartment of Pediatrics, Center for Biomedical Ethics, and School of Law, Vanderbilt University, Nashville, TN, USA.ORCID http://orcid.org/0000-0002-0308-4110
Susan M WolfLaw School, Medical School, and Consortium on Law and Values in Health, Environment & the Life Science, University of Minnesota, Minneapolis, MN, USA.
Susan A BerryDepartment of Pediatrics, Division of Genetics and Metabolism, University of Minnesota, Minneapolis, MN, USA.ORCID http://orcid.org/0000-0001-7970-688X
Barbara J EvansLaw Center, Department of Electrical and Computer Engineering, Center for Biotechnology & Law, University of Houston, Houston, TX, USA.ORCID http://orcid.org/0000-0001-8115-7971
James P EvansDepartments of Medicine and Genetics, University of North Carolina, Chapel Hill, NC, USA.
Ralph HallUniversity of Minnesota Law School, Minneapolis, MN, USA.
Diane KorngiebelDepartment of Bioinformatics and Medical Education, University of Washington, Seattle, WA, USA.ORCID http://orcid.org/0000-0001-5704-4416
Anne-Marie LabergeDepartment of Pediatrics, CHU Sainte-Justine and Université de Montréal, Montreal, QC, Canada.
Bonnie S LeRoyDepartment of Genetics, Cell Biology and Development, University of Minnesota, Minneapolis, MN, USA.
Amy L McGuireCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.

Funding

Genomic Health Care and the Medically UnderservedP50HG003374 · NHGRI · UNIVERSITY OF WASHINGTON · PI BURKE, WYLIE G. · 2004 to 2014
$9.8M
VGER, the Vanderbilt Genome-Electronic Records ProjectU01HG008672 · NHGRI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI DENNY, JOSHUA C., RODEN, DAN M · 2015 to 2019
$5.1M
LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical ApplicationR01HG008605 · NHGRI · UNIVERSITY OF MINNESOTA · PI CLAYTON, ELLEN WRIGHT, LAWRENZ, FRANCES PATRICIA · 2016 to 2018
$2.2M
Ethically responsible clinical decision support for Lynch Syndrome screeningK01HG008180 · NHGRI · UNIVERSITY OF WASHINGTON · PI KORNGIEBEL, DIANE M · 2014 to 2018
$611k
NHGRI NIH HHS K01 HG008180NHGRI NIH HHS P50 HG003374NHGRI NIH HHS R01 HG008605NHGRI NIH HHS U01 HG008672
6 · The paper itself

Abstract

Genomic sequencing and multigene panel tests are moving rapidly into clinical practice for a range of indications, but the evidence to guide appropriate use is currently limited. Well-crafted advice is needed to reduce unjustified practice variation, minimize risk of error and harm to patients, and encourage best practices. In the absence of definitive evidence, provisional advice can be helpful if it clarifies the potential benefits and risks of different courses of action and identifies the knowledge gaps most important to address in future research. This paper proposes an evolutionary process starting with clinical practice advisory documents (CPADs) and culminating in clinical practice guidelines (CPGs), using two case examples to illustrate the need for this process. When evidence is limited, CPADs can clarify current practice options and identify key knowledge gaps. Added evidence can then support updates to the CPADs over time. Ultimately CPADs can provide the foundation for definitive CPGs as the evidence base matures. This approach addresses an important challenge in genomics and may be applicable to other fields in which technology and practice are outpacing evidence generation.

Indexed as

Evidence-Based MedicineGenomicsHumansPractice Guidelines as Topicclinical practice guidelinesevidencegenomic medicinegenomicspractice advice

Identifiers

PMID31160753
PMCPMC8607994

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.