Consent for genomic sequencing: a conversation, not just a form

Consent for genomic sequencing: a conversation, not just a form
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Danya F. Vears
European Journal of Human Genetics, 3 March 2025
Open Access
Excerpt
How to obtain truly informed consent for genomic sequencing in clinical practice is a long-standing topic of debate in the field. Although some research (including interviews with health professionals and analysis of consent forms) has already been conducted in this space, these studies can often only give a vague indication of the nature of the information that patients or families might be provided. They are limited in that they assume that health professionals use the consent form as a template to guide the discussion with the patient when, in reality, very little research has been conducted that examines exactly how, if at all, consent forms are utilised in these consultations. The study conducted by Ellard et al. [1] goes a step further than most to explore what happens during a consent interaction when patients are offered diagnostic genomic sequencing within a public health service. Their team audio-recorded consent conversations between healthcare professionals and parents of paediatric patients offered WGS through the Genomic Medicine Service across seven regionally diverse NHS Trusts in the United Kingdom. However, it also raises further questions, including how to make a consent interaction into a legitimate conversation and what information is important to convey during this conversation…