Is There a Duty to Recontact in Light of New Genetic Technologies? A Systematic Review of the Literature

Overview

Journal Genet Med

Publisher Elsevier

Specialty Genetics

Date 2014 Dec 16

PMID 25503495

Citations 40

Authors

Ellen Otten

Mirjam Plantinga

Erwin Birnie

Marian A Verkerk

Anneke M Lucassen

Adelita V Ranchor

Irene M van Langen

Affiliations

Soon will be listed here.

Abstract

Purpose: With 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.

Methods: We 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.

Results: The 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.

Conclusion: To 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.

Citing Articles

Population-based genetic carrier screening. A consensus statement from the Spanish societies: AEGH, AEDP, ASEBIR, SEAGEN, SEF and SEGCD.

Vendrell X, Abuli A, Serra C, Guillen J, Rueda J, Garcia-Planells J Eur J Hum Genet. 2024; .

PMID: 39623216 DOI: 10.1038/s41431-024-01751-3.

DNA sequencing in oncology: a focus group study on a duty to recontact.

Giesbertz N, Assen L, van Harten W, Bredenoord A Future Sci OA. 2024; 10(1):2432233.

PMID: 39578423 PMC: 11587842. DOI: 10.1080/20565623.2024.2432233.

Canadian College of Medical Geneticists: clinical practice advisory document - responsibility to recontact for reinterpretation of clinical genetic testing.

Goh E, Chad L, Richer J, Bombard Y, Mighton C, Agatep R J Med Genet. 2024; 61(12):1123-1131.

PMID: 39362754 PMC: 11672037. DOI: 10.1136/jmg-2024-110330.

The Importance of Copy Number Variant Analysis in Patients with Monogenic Kidney Disease.

Claus L, Ernst R, Elferink M, van Deutekom H, Van der Zwaag B, van Eerde A Kidney Int Rep. 2024; 9(9):2695-2704.

PMID: 39291214 PMC: 11403095. DOI: 10.1016/j.ekir.2024.06.026.

GENETIC DUTIES.

Roberts J, Foulkes A William Mary Law Rev. 2023; 62(1):143-211.

PMID: 37654734 PMC: 10471136.

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