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Consent and autonomy in the genomics era

Consent and autonomy in the genomics era
Consent and autonomy in the genomics era
Purpose of review: genomic tests offer increased opportunity for diagnosis, but their outputs are often uncertain and complex; results may need to be revised and/or may not be relevant until some future time. We discuss the challenges that this presents for consent and autonomy.

Recent findings: popular discourse around genomic testing tends to be strongly deterministic and optimistic, yet many findings from genomic tests are uncertain or unclear. Clinical conversations need to anticipate and potentially challenge unrealistic expectations of what a genomic test can deliver in order to enhance autonomy and ensure that consent to genomic testing is valid.

Summary: we conclude that ‘fully informed’ consent is often not possible in the context of genomic testing, but that an open-ended approach is appropriate. We consider that such broad consent can only work if located within systems or organisations that are trustworthy and that have measures in place to ensure that such open-ended agreements are not abused. We suggest that a relational concept of autonomy has benefits in encouraging focus on the networks and relationships that allow decision making to flourish.
85-91
Horton, Rachel
f79e8b73-2edc-47aa-b29a-1801ad10fe6b
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Horton, Rachel
f79e8b73-2edc-47aa-b29a-1801ad10fe6b
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5

Horton, Rachel and Lucassen, Anneke (2019) Consent and autonomy in the genomics era. Current Genetic Medicine Reports, 7 (2), 85-91. (doi:10.1007/s40142-019-00164-9).

Record type: Article

Abstract

Purpose of review: genomic tests offer increased opportunity for diagnosis, but their outputs are often uncertain and complex; results may need to be revised and/or may not be relevant until some future time. We discuss the challenges that this presents for consent and autonomy.

Recent findings: popular discourse around genomic testing tends to be strongly deterministic and optimistic, yet many findings from genomic tests are uncertain or unclear. Clinical conversations need to anticipate and potentially challenge unrealistic expectations of what a genomic test can deliver in order to enhance autonomy and ensure that consent to genomic testing is valid.

Summary: we conclude that ‘fully informed’ consent is often not possible in the context of genomic testing, but that an open-ended approach is appropriate. We consider that such broad consent can only work if located within systems or organisations that are trustworthy and that have measures in place to ensure that such open-ended agreements are not abused. We suggest that a relational concept of autonomy has benefits in encouraging focus on the networks and relationships that allow decision making to flourish.

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e-pub ahead of print date: 2 May 2019

Identifiers

Local EPrints ID: 432736
URI: http://eprints.soton.ac.uk/id/eprint/432736
PURE UUID: 96866e2e-a310-4dde-bb8c-c25cce3658ba
ORCID for Anneke Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

Catalogue record

Date deposited: 25 Jul 2019 16:30
Last modified: 22 Nov 2021 02:47

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