Genetic tests are increasingly seen as the key to dramatic improvements in clinicians’ ability to individualize health care. Genomic sequencing (GS) is a technology used to sequence an individual’s genome.
The process can be applied to a variety health concerns, such as discovering certain foods that disrupt digestion or finding the right dietary supplements.
Despite the many benefits, a new report explained, “implementation into mainstream clinical care has been slow and challenging.”
The report examined how much value people place on genomic sequencing and how to use those results for informing healthcare decisions.The authors suggest that the price tag correlates with what information patients receive in return.
"This is the first time we have attempted to measure the value society places on genomic testing in both children and adults," said lead author Dr. Ilias Goranitis.
The study
The research was published in the latest edition of the international journal, Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics (ACMMG).
Three different surveys were distributed to 1,913 participants. The first survey was pediatric, which involved 533 respondents. The second survey was for symptomatic adults and was completed by 700 people. The third was an at-risk adult survey that included 680 participants.
Findings
The results found that people are willing to pay the most for GS information in pediatric conditions: $3,830–$10,675.
For symptomatic adults, the value of GS was estimated at $1,100–$5671 and GS for at-risk adults was valued at $1,425–$3,503.
Across surveys, participants demonstrated a negative preference for GS when costs were higher and the possibility of results being disclosed to life insurance companies was presented.
Participants showed a positive preference for GS when the chance of having the genetic condition increased, when the severity of the condition increased, when there were options available to prevent or cure the condition or to improve the symptoms of the condition, when the information from GS could improve the process of medical care, and when they could receive secondary findings.
Consistently across all three surveys, participants were 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, or they could learn about preventive or treatment options.
“The clinical and regulatory context, and individuals’ sociodemographic and attitudinal characteristics influenced the value and uptake of GS. Society values highly the diagnostic, clinical, and nonclinical benefits of GS. The personal utility of GS should be considered in health-care decision-making.”
The report also noted that there is substantial interest in GS, especially when it comes to pediatric health.
"We hope this research will help inform those decisions by expanding the way we understand and value the benefits of genomic testing, enabling a more appropriate evaluation framework for informing healthcare priorities."
The information in the survey could have implications for the market of lower level tests that include some genetic components that consumers use to make nutrition choices or that are used by personalized nutrition firms to help direct their users to certain products. These are less expensive but cost is still a key factor. In 2019 highly touted firm Arivale, which offered tailored wellness and nutrition coaching based on genetic testing, abruptly shut down reportedly because the high monthly cost meant too few consumers chose to take part.
Source: Genetics in Medicine
06 May 2020 https://doi.org/10.1038/s41436-020-0809-2
“The personal utility and uptake of genomic sequencing in pediatric and adult conditions: eliciting societal preferences with three discrete choice experiments”
Authors: I. Goranitis et al.
