How do clinical genetics consent forms address the familial approach to confidentiality and incidental findings? A mixed-methods study

Sandi Dheensa, Gillian Crawford, Claire Salter, Michael Parker, Angela Fenwick, Anneke Lucassen

Research output: Contribution to journalArticle (Academic Journal)peer-review

Abstract

Genetic test results can be relevant to patients and their relatives. Questions thus arise around whether clinicians regard genetic information as confidential to individuals or to families, and about how they broach this and other issues, including the potential for incidental findings, in consent (forms) for genetic testing. We conducted a content analysis of UK-wide genetic testing consent forms and interviewed 128 clinicians/laboratory scientists. We found that almost all genetic services offered patients multiple, sometimes unworkable, choices on forms, including an option to veto the use of familial genetic information to benefit relatives. Participants worried that documented choices were overriding professional judgement and cautioned against any future forms dictating practice around incidental findings. We conclude that 'tick-box' forms, which do little to enhance autonomy, are masking valid consent processes in clinical practice. As genome-wide testing becomes commonplace, we must re-consider consent processes, so that they protects patients'-and relatives'-interests.

Original languageEnglish
Pages (from-to)155-166
Number of pages12
JournalFamilial Cancer
Volume17
Issue number1
Early online date12 Apr 2017
DOIs
Publication statusE-pub ahead of print - 12 Apr 2017

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