Genomic value varies
A new study looks at the value people place on having their genome sequenced for medical purposes.
Personal genome sequencing is becoming cheaper, and while many value the chance to see specifically what their genetic preconditions and liabilities are, they also value keeping the results private.
New research provides insights into the value people place on clinical genomic testing and the factors that influence its uptake.
The risk of results being disclosed to life insurance companies and the cost of genomic testing were the two biggest negative influences on decision making.
According to the study by the Murdoch Children's Research Institute (MCRI), people are willing to pay an average A$690 to avoid having their results disclosed to insurers.
“This is the first time we have attempted to measure the value society places on genomic testing in both children and adults,” lead author Dr Ilias Goranitis says.
“We identified substantial personal utility in genomic sequencing. Currently, most aspects of this personal utility are not considered when healthcare decisions are made, particularly when it comes to public reimbursements for genomic tests.”
The study finds that, depending on the clinical context, the value that individuals place on genomic testing ranges between A$5470 and A$15,250 for conditions affecting children.
The paper finds that people are more likely to proceed with testing when:
- They are at risk of having a genetic condition
- The genetic condition is severe
- There are treatment options to alleviate symptoms
- The information can improve their medical care
- They could receive secondary findings, such as learning about future risk of other treatable genetic conditions