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Survey suggests that Americans are willing to pay a premium for genetic tests

17 January 2011

By Rosie Beauchamp

Appeared in BioNews 591

A recent study suggests American consumers would be prepared to pay on average up to $600 for a predictive genetic test where no direct treatment is available.

Research from Tufts Medical Centre examined the willingness of individuals to take and pay for predictive medical tests. The findings showed that on average 76 percent of participants would take a hypothetical predictive test in order to find out the likelihood of developing four stipulated conditions: Alzheimer's disease, breast cancer, prostate cancer or arthritis.

The randomised national survey was conducted online. Of the 1,463 people who responded 82 percent expressed a willingness to be tested for prostate cancer and 72 percent for Alzheimer's. The average price an individual was willing to pay varied from $300 for an arthritis test to $600 for a prostate test.

The growing demand for genetic testing worldwide has raised questions about the value of such tests. As reported in BioNews, concerns have been expressed by the US Government Accountability Office and the Food and Drugs Administration that there needs to be tighter regulation as predictive tests of this sort were often 'inaccurate and misleading'.

When looking at the utility of diagnostic tests, typical measures take into account the accuracy of the test results, cost effectiveness or improved health outcomes. The Tufts Medical Centre study suggests that different measures may be needed to assess the value of predictive testing such as the individual's willingness to make lifestyle changes based on the test results and the value of knowledge for its own sake.

Commenting on the study, lead author Professor Peter Neumann, director of the Centre for the Evaluation of Value and Risk in Health at the Institute for Clinical Research and Health Policy Studies at Tufts Medical Centre, said: 'This study brings us a step closer to understanding people's preferences and motivations for wanting a diagnostic test, even if it has no bearing on subsequent medical treatment'.

He went on to say that 'by taking into account all implications of these tests - including the risks, costs, potential cost offsets, and the value the have outside of medical outcomes - we can build better policies and make better decisions about coverage and reimbursement so that we may more accurately reflect patient preferences and appropriate uses of societal resources'.

The study was published in the medical journal Health Economics.


03 October 2011 - by Dr Vivienne Raper and Ruth Saunders 
'We are not our genomes'. Lone Frank, the author of 'My Beautiful Genome – Exposing our Genetic Quirks, One Genome at a Time' spoke to BioNews about her latest book, the recent surge in direct-to-consumer genetic tests, the ethical dilemmas they could pose and what we can understand from such tests. As he says, 'genetics is a work in progress'...

09 August 2010 - by Chris Chatterton 
The Human Genome Commission (HGC) has published a new ‘Common Framework of Principles’ for direct-to-consumer (DTC) genetic tests on 4 August....
26 July 2010 - by Chris Chatterton 
Direct-to-consumer genetic tests were called into question by the US authorities last week. An undercover investigation by the US Government Accountability Office (GAO) found that test results were often inaccurate and misleading....
28 June 2010 - by Seil Collins 
The Food and Drug Administration (FDA) has told five US companies that the genetic tests they sell directly to consumers are unapproved....
29 March 2010 - by Kyrillos Georgiadis 
The US National Institute of Health (NIH) has announced it plans to create a public Genetic Testing Registry (GTR). The database aims to improve the levels of information accessible to consumers, researchers and healthcare providers, about the availability, validity and clinical usefulness of genetic tests...
01 February 2010 - by Dr Nadeem Shaikh 
A company in the US is offering potential parents the chance to test whether their future offspring might develop serious health problems by selling them home genetic test kits. Counsyl allows customers to send a saliva sample via the post, which is used in conjunction with DNA chip technology to screen if the person is a carrier for a single genetic mutation known to cause a disease. If both parents carry the same mutation,...

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