Evidence map›Paper›PMID 25503495›Full record

SynthesisGenetics in medicine : official journal of the American College of Medical Genetics2015

Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature.

Ellen Otten, Mirjam Plantinga, Erwin Birnie, Marian A Verkerk, Anneke M Lucassen, Adelita V Ranchor, Irene M Van Langen

Abstract readSystematic Review
PubMed Publisher
In one paragraph

Synthesis in Genetics in medicine : official journal of the American College of Medical Genetics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 48 papers.

0numbers the graph read from it
0cells of the map it votes in
48citing papers in PubMed
4.4field-weighted citation impact, top 5% of its field
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

48 citing papers in PubMed, 92 citations in OpenAlex.

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  17. Recontacting registry participants with genetic updates through GenomeConnect, the ClinGen patient registry.Genetics in medicine : official journal of the American College of Medical Genetics · 2021
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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

7 authors at 2 institutions in 2 countries.

Ellen OttenDepartment of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
Mirjam PlantingaDepartment of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
Erwin BirnieDepartment of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
Marian A VerkerkDepartment of Internal Medicine, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.ORCID 0000000233816431
Anneke M Lucassen1] Faculty of Medicine, Clinical Ethics and Law, University of Southampton, Southampton, UK [2] Wessex Clinical Genetic Service, Southampton, UK.
Adelita V RanchorDepartment of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
Irene M Van LangenDepartment of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
University Medical Center Groningen · NLWessex Regional Genetics Laboratory · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeWith rapid advances in genetic technologies, new genetic information becomes available much faster today than just a few years ago. This has raised questions about whether clinicians have a duty to recontact eligible patients when new genetic information becomes available and, if such duties exist, how they might be implemented in practice.

methodsWe report the results of a systematic literature search on the ethical, legal, social (including psychological), and practical issues involved in recontacting former patients who received genetic services. We identified 1,428 articles, of which 61 are covered in this review.

resultsThe empirical evidence available indicates that most but not all patients value being recontacted. A minority of (older) articles conclude that recontacting should be a legal duty. Most authors consider recontacting to be ethically desirable but practically unfeasible. Various solutions to overcome these practical barriers have been proposed, involving efforts of laboratories, clinicians, and patients.

conclusionTo advance the discussion on implementing recontacting in clinical genetics, we suggest focusing on the question of in what situations recontacting might be regarded as good standard of care. To this end, reaching a professional consensus, obtaining more extensive empirical evidence, and developing professional guidelines are important.

Indexed as

AustraliaCanadaDuty to RecontactEthics, MedicalEuropean UnionGenetic TestingHumansIndiaIsraelJurisprudenceUnited States

Identifiers

PMID25503495
OpenAlexW2167702302

What OpenQuestion holds

Textmetadata
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.