The Price of Whole-genome Sequencing May Be Decreasing, but Who Will Be Sequenced?

Overview

Journal Per Med

Specialties General Medicine
Genetics

Date 2017 Oct 11

PMID 28993792

Citations 5

Authors

Deborah A Marshall

Karen V MacDonald

Jill Oliver Robinson

Lisa F Barcellos

Milena Gianfrancesco

Monica Helm

Amy McGuire

Robert C Green

Michael P Douglas

Michael A Goldman

Kathryn A Phillips

Affiliations

Soon will be listed here.

Abstract

Aim: Since whole-genome sequencing (WGS) information can have positive and negative personal utility for individuals, we examined predictors of willingness to pay (WTP) for WGS.

Patients & Methods: We surveyed two independent populations: adult patients (n = 203) and college seniors (n = 980). Ordinal logistic regression models were used to characterize the relationship between predictors and WTP.

Results: Sex, age, education, income, genomic knowledge and knowing someone who had genetic testing or having had genetic testing done personally were associated with significantly higher WTP for WGS. After controlling for income and education, males were willing to pay more for WGS than females.

Conclusion: Differences in WTP may impact equity, coverage, affordability and access, and should be anticipated by public dialog about related health policy.

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References

Ginsburg G, Willard H . Genomic and personalized medicine: foundations and applications. Transl Res. 2009; 154(6):277-87. DOI: 10.1016/j.trsl.2009.09.005. View

Collins J, Ryan L, Truby H . A systematic review of the factors associated with interest in predictive genetic testing for obesity, type II diabetes and heart disease. J Hum Nutr Diet. 2013; 27(5):479-88. DOI: 10.1111/jhn.12179. View

Biesecker L, Green R . Diagnostic clinical genome and exome sequencing. N Engl J Med. 2014; 370(25):2418-25. DOI: 10.1056/NEJMra1312543. View

Goldsmith L, Jackson L, OConnor A, Skirton H . Direct-to-consumer genomic testing: systematic review of the literature on user perspectives. Eur J Hum Genet. 2012; 20(8):811-6. PMC: 3400732. DOI: 10.1038/ejhg.2012.18. View

NajafZadeh M, Johnston K, Peacock S, Connors J, Marra M, Lynd L . Genomic testing to determine drug response: measuring preferences of the public and patients using Discrete Choice Experiment (DCE). BMC Health Serv Res. 2013; 13:454. PMC: 3827922. DOI: 10.1186/1472-6963-13-454. View

Cuffe S, Hon H, Qiu X, Tobros K, Wong C, De Souza B . Cancer patients acceptance, understanding, and willingness-to-pay for pharmacogenomic testing. Pharmacogenet Genomics. 2014; 24(7):348-55. DOI: 10.1097/FPC.0000000000000061. View

Geelhoed E, Harrison K, Davey A, Walpole I . Parental perspective of the benefits of genetic testing in children with congenital deafness. Public Health Genomics. 2009; 12(4):245-50. DOI: 10.1159/000203780. View

Ries N, Hyde-Lay R, Caulfield T . Willingness to pay for genetic testing: a study of attitudes in a Canadian population. Public Health Genomics. 2009; 13(5):292-300. DOI: 10.1159/000253120. View

Chakradhar S . Insurance companies are slow to cover next-generation sequencing. Nat Med. 2015; 21(3):204-5. DOI: 10.1038/nm0315-204. View

10.

Marshall D, Gonzalez J, Reed Johnson F, MacDonald K, Pugh A, Douglas M . What are people willing to pay for whole-genome sequencing information, and who decides what they receive?. Genet Med. 2016; 18(12):1295-1302. PMC: 5133139. DOI: 10.1038/gim.2016.61. View

11.

Garfeld S, Douglas M, MacDonald K, Marshall D, Phillips K . Consumer familiarity, perspectives and expected value of personalized medicine with a focus on applications in oncology. Per Med. 2015; 12(1):13-22. PMC: 4303575. DOI: 10.2217/pme.14.74. View

12.

Bosompra K, Ashikaga T, Flynn B, Worden J, Solomon L . Psychosocial factors associated with the public's willingness to pay for genetic testing for cancer risk: a structural equations model. Health Educ Res. 2001; 16(2):157-72. DOI: 10.1093/her/16.2.157. View

13.

Bick D, Dimmock D . Whole exome and whole genome sequencing. Curr Opin Pediatr. 2011; 23(6):594-600. DOI: 10.1097/MOP.0b013e32834b20ec. View

14.

Neumann P, Cohen J, Hammitt J, Concannon T, Auerbach H, Fang C . Willingness-to-pay for predictive tests with no immediate treatment implications: a survey of US residents. Health Econ. 2012; 21(3):238-51. DOI: 10.1002/hec.1704. View

15.

Kaphingst K, Facio F, Cheng M, Brooks S, Eidem H, Linn A . Effects of informed consent for individual genome sequencing on relevant knowledge. Clin Genet. 2012; 82(5):408-15. PMC: 3469729. DOI: 10.1111/j.1399-0004.2012.01909.x. View

16.

Regier D, Ryan M, Phimister E, Marra C . Bayesian and classical estimation of mixed logit: An application to genetic testing. J Health Econ. 2009; 28(3):598-610. DOI: 10.1016/j.jhealeco.2008.11.003. View

17.

Manolio T, Chisholm R, Ozenberger B, Roden D, Williams M, Wilson R . Implementing genomic medicine in the clinic: the future is here. Genet Med. 2013; 15(4):258-67. PMC: 3835144. DOI: 10.1038/gim.2012.157. View

18.

Berg J, Khoury M, Evans J . Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time. Genet Med. 2011; 13(6):499-504. DOI: 10.1097/GIM.0b013e318220aaba. View

19.

Herbild L, Bech M, Gyrd-Hansen D . Estimating the Danish populations' preferences for pharmacogenetic testing using a discrete choice experiment. The case of treating depression. Value Health. 2008; 12(4):560-7. DOI: 10.1111/j.1524-4733.2008.00465.x. View

20.

Graves K, Peshkin B, Luta G, Tuong W, Schwartz M . Interest in genetic testing for modest changes in breast cancer risk: implications for SNP testing. Public Health Genomics. 2011; 14(3):178-89. PMC: 3104870. DOI: 10.1159/000324703. View