A Systematic Review on the Impact of Genetic Testing for Familial Melanoma II: Psychosocial Outcomes and Attitudes

Clare A Primiero; Tatiane Yanes; Anna Finnane; H Peter Soyer; Aideen M McInerney-Leo

doi:10.1159/000513576

A Systematic Review on the Impact of Genetic Testing for Familial Melanoma II: Psychosocial Outcomes and Attitudes

Dermatology. 2021;237(5):816-826. doi: 10.1159/000513576. Epub 2021 Jan 28.

Authors

Clare A Primiero¹, Tatiane Yanes¹, Anna Finnane², H Peter Soyer^{1

3}, Aideen M McInerney-Leo⁴

Affiliations

¹ The University of Queensland Diamantina Institute, The University of Queensland, Dermatology Research Centre, Brisbane, Queensland, Australia.
² School of Public Health, The University of Queensland, Brisbane, Queensland, Australia.
³ Department of Dermatology, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
⁴ The University of Queensland Diamantina Institute, The University of Queensland, Dermatology Research Centre, Brisbane, Queensland, Australia, a.mcinerney@uq.edu.au.

PMID: 33508831
DOI: 10.1159/000513576

Abstract

Background: Although genetic testing for known familial melanoma genes is commercially available, clinical implementation has been restrained as utility is unclear, concerns of causing psychological distress are often cited, and consumer interest and perceptions are not well understood. A review of studies exploring participant-reported psychosocial outcomes and attitudes towards genetic testing for familial melanoma will provide insight into common emotional and cognitive responses.

Methods: Database searches of PubMed, Embase, CINAHL, PsycINFO and the Cochrane Library were conducted using a date range of January 1995 to June 2020. Studies examining any psychosocial outcomes alongside genetic testing (real or hypothetical), in participants described as having a high risk of melanoma, were eligible. A narrative synthesis of results was used to describe psychosocial outcomes and summarise participant beliefs and attitudes towards genetic testing.

Results: Limited evidence of adverse psychosocial outcomes was found. No impacts on perceived risk or control were reported, and minimal decisional regret was recorded. Generalised distress was comparable between both genetic mutation carriers and non-carriers, often decreasing over time from pretesting levels. Melanoma-specific distress was frequently higher in carriers than non-carriers; however, this difference was present prior to testing and often associated with personal melanoma history. Overall, participants' attitudes towards testing were largely positive, with benefits more frequently described than limitations, and support for testing minors was strong.

Conclusions: This review has found evidence of few adverse psychological outcomes following genetic testing. There was no indication of increased distress after genetic test results had been disclosed. If these findings were replicated in additional, larger, diverse populations over a longer follow-up period, this would be compelling evidence to guide clinical recommendations.

Keywords: Genetic testing; Melanoma; Psychosocial impact.

Publication types

Systematic Review

MeSH terms

Genetic Testing*
Health Knowledge, Attitudes, Practice*
Humans
Melanoma / diagnosis*
Melanoma / psychology*
Melanoma, Cutaneous Malignant
Patient Acceptance of Health Care / psychology*
Psychosocial Functioning*
Skin Neoplasms / diagnosis*
Skin Neoplasms / psychology*