The complex nature of deciding what to report
- Given the possibility to look at the whole genome, what do we choose to look at?
- Who makes this decision?
- Whose voice is loudest: how involved should the public be in making decisions about this process?
- How do we interpret the data and report it back to the patient or participant?
- In the UK, looking for information in addition to that which is related to the clinical question (ie the reason the person is having their genome investigated) is known as looking for incidental findings or additional looked for findings. In the US and in some other countries it could be called secondary findings.
- In the UK, a decision has been made to look for and report back only variation in genes that are linked to conditions which are considered ‘serious and actionable’.
- Disease prediction is very complex, and ideas about what information should be considered ‘serious and actionable’ are be subjective.
Whole Genome Sequencing: Decoding the Language of Life and Health
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