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What are people willing to pay for whole-genome sequencing information, and who decides what they receive?

ABSTRACT: Whole-genome sequencing (WGS) can be used as a powerful diagnostic tool as well as for screening, but it may lead to anxiety, unnecessary testing, and overtreatment. Current guidelines suggest reporting clinically actionable secondary findings when diagnostic testing is performed. We examined preferences for receiving WGS results.A US nationally representative survey (n = 410 adults) was used to rank preferences for who decides (an expert panel, your doctor, you) which WGS results are reported. We estimated the value of information about variants with varying levels of clinical usefulness by using willingness to pay contingent valuation questions.The results were as follows: 43% preferred to decide themselves what information is included in the WGS report. 38% (95% confidence interval (CI): 33-43%) would not pay for actionable variants, and 3% (95% CI: 1-5%) would pay more than $1,000. 55% (95% CI: 50-60%) would not pay for variants for which medical treatment is currently unclear, and 7% (95% CI: 5-9%) would pay more than $400.Most people prefer to decide what WGS results are reported. Despite valuing actionable information more, some respondents perceive that genetic information could negatively impact them. Preference heterogeneity for WGS information should be considered in the development of policies, particularly to integrate patient preferences with personalized medicine and shared decision making.Genet Med 18 12, 1295-1302.

SUBMITTER: Marshall DA

PROVIDER: S-EPMC5133139 | biostudies-literature | 2016 Dec

REPOSITORIES: biostudies-literature

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What are people willing to pay for whole-genome sequencing information, and who decides what they receive?

Marshall Deborah A DA Gonzalez Juan Marcos JM Johnson F Reed FR MacDonald Karen V KV Pugh Amy A Douglas Michael P MP Phillips Kathryn A KA

Genetics in medicine : official journal of the American College of Medical Genetics 20160602 12

<h4>Purpose</h4>Whole-genome sequencing (WGS) can be used as a powerful diagnostic tool as well as for screening, but it may lead to anxiety, unnecessary testing, and overtreatment. Current guidelines suggest reporting clinically actionable secondary findings when diagnostic testing is performed. We examined preferences for receiving WGS results.<h4>Methods</h4>A US nationally representative survey (n = 410 adults) was used to rank preferences for who decides (an expert panel, your doctor, you) ...[more]

PMID: 27253734

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Project description:BackgroundThe health impacts from traffic-related pollutants bring costs to society, which are often not reflected in market prices for transportation. We set out to simultaneously assess the willingness-to-pay (WTP) for traffic-related air pollution and noise effect on health, using a single measurement instrument and approach. We investigated the proportion and determinants of "protest vote/PV responses (people who were against valuing their health in terms of money)" and "don't know"/DK answers, and explored the effect of DK on the WTP distributions.MethodsWithin the framework of the EU-funded project INTARESE, we asked over 5,200 respondents in five European countries to state their WTP to avoid health effects from road traffic-related air pollution and noise in an open-ended web-based questionnaire. Determinants of PV and DK were studied by logistic regression using variables concerning socio-demographics, income, health and environmental concern, and risk perception.ResultsAbout 10% of the respondents indicated a PV response and between 47-56% of respondents gave DK responses. About one-third of PV respondents thought that costs should be included in transportation prices, i.e. the polluter should pay. Logistic regression analyses showed associations of PV and DK with several factors. In addition to social-demographic, economic and health factors known to affect WTP, environmental concern, awareness of health effects, respondent's ability to relax in polluted places, and their view on the government's role to reduce pollution and on policy to improve wellbeing, also affected the PV and DK response. An exploratory weighting and imputation exercise did not show substantial effects of DK on the WTP distribution.ConclusionsWith a proportion of about 50%, DK answers may be a more relevant issue affecting WTP than PV's. The likelihood to give PV and DK response were influenced by socio-demographic, economic and health factors, as well as environmental concerns and appreciation of environmental conditions and policies. In contested policy issues where actual policy may be based on WTP studies, PV and DK answers may indeed affect the outcome of the WTP study. PV and DK answers and their determinants therefore deserve further study in CV studies on environmental health effects.

Project description:BackgroundGenomic services are increasingly accessible to young adults starting their independent lives with responsibility for their self-care, yet their attitudes to sharing genomic information remain under-researched. This study explored attitudes of university-based 18-25 year-olds towards sharing personal whole-genome sequencing (WGS) information with relatives.MethodsWe surveyed 112 young adults. Hypotheses were tested regarding the relationships between their preferences for sharing personal WGS information with relatives and factors including their gender, previous genetics-specific education, general educational attainment level and current study in a science, technology, engineering, maths or medicine (STEMM) field.ResultsMost participants were positive about both their intention to share their WGS results with their parents and siblings, and their desire to know their relatives' results. Being female and having a university-level genetics education were consistently positively correlated with intention to share one's results with parents and with siblings as well as the desire to know relatives' results. Additionally, females who had undertaken a genetics course at university had significantly greater intentions and desires than females who had not. Lower general educational attainment was related to a lower intention to share with siblings. Participants who were in a STEMM field had a greater desire to know their relatives' results.ConclusionsParticipants' gender and prior genetics education were consistently related to their intentions to share WGS results with relatives and their desire to know relatives' results. Educational attainment was found to be positively correlated with intention to share with siblings. Being in a STEMM field was related to participants' desire to know their relatives' results. These findings indicate that gender and genetics education are particularly important influencers on young adults' stated sharing preferences. More research is required to examine the dependent variables studied to further understand their influence on attitudes to sharing WGS results. These findings are particularly interesting for information provision and support before genomic sequencing and post-results to improve the outcomes for individuals and their relatives.

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What are people willing to pay for whole-genome sequencing information, and who decides what they receive?

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What are people willing to pay for whole-genome sequencing information, and who decides what they receive?

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