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

Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature
Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature
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.
clinical genetics, duty to recontact, ethical, legal, and social (including psychological) issues, next-generation technologies, professional and patient perspectives
1098-3600
Otten, Ellen
e91c0774-d6cb-4ce4-8669-96c8a3d353ab
Plantinga, Mirjam
80329f67-dce0-4e72-ad91-8aff2212dde6
Birnie, Erwin
dad5871f-46ff-4765-9c3f-b2d89aa71a31
Verkerk, Marian A
1594fa5d-be2e-4d44-8089-176cfe5116ee
Lucassen, Anneke M
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Ranchor, Adelita V
cdd2a224-eb27-4523-9c17-0e67241f59d4
Van Langen, Irene M
7a08ddd7-ab68-43a4-8220-7f56575cf40e
Otten, Ellen
e91c0774-d6cb-4ce4-8669-96c8a3d353ab
Plantinga, Mirjam
80329f67-dce0-4e72-ad91-8aff2212dde6
Birnie, Erwin
dad5871f-46ff-4765-9c3f-b2d89aa71a31
Verkerk, Marian A
1594fa5d-be2e-4d44-8089-176cfe5116ee
Lucassen, Anneke M
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Ranchor, Adelita V
cdd2a224-eb27-4523-9c17-0e67241f59d4
Van Langen, Irene M
7a08ddd7-ab68-43a4-8220-7f56575cf40e

Otten, Ellen, Plantinga, Mirjam, Birnie, Erwin, Verkerk, Marian A, Lucassen, Anneke M, Ranchor, Adelita V and Van Langen, Irene M (2014) Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature. Genetics in Medicine. (doi:10.1038/gim.2014.173). (PMID:25503495)

Record type: Article

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.

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More information

Published date: 11 December 2014
Keywords: clinical genetics, duty to recontact, ethical, legal, and social (including psychological) issues, next-generation technologies, professional and patient perspectives
Organisations: Faculty of Medicine

Identifiers

Local EPrints ID: 372910
URI: http://eprints.soton.ac.uk/id/eprint/372910
ISSN: 1098-3600
PURE UUID: 12bd966b-08bf-430e-9575-6ed48cb9d834
ORCID for Anneke M Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

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Date deposited: 05 Jan 2015 11:45
Last modified: 18 Feb 2021 16:58

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Contributors

Author: Ellen Otten
Author: Mirjam Plantinga
Author: Erwin Birnie
Author: Marian A Verkerk
Author: Adelita V Ranchor
Author: Irene M Van Langen

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