Genetic testing’s growth raises legal and ethical concerns

Chad Terhune / Los Angeles Times
Published Mar 15, 2012 at 05:00AM / Updated Nov 19, 2013 at 12:31AM

LOS ANGELES — Spending on genetic tests has reached $5 billion annually and could top $25 billion within a decade, according to an insurance industry study published this week.

The rise in spending is likely to intensify the debate over genetic testing as policymakers and employers struggle to contain health care costs.

The growing availability of genetic and molecular diagnostic tests offers the promise of earlier detection of disease and more personalized treatments that could wring substantial savings from the nation’s $2.6 trillion-a-year health care tab.

But many medical providers and other experts worry that those benefits may be outweighed by indiscriminate use of genetic testing, similar to what has occurred with some spending on popular prescription drugs and expensive imaging tests.

The research arm of UnitedHealth Group Inc., the nation’s largest insurer, conducted the study as well as a survey of physicians and patients on their attitudes toward genetic testing. Researchers and patient advocates have raised questions about costs and expressed ethical and legal concerns about how genetic test results are used by families, insurers and physicians.

More than half the 1,506 consumers surveyed by UnitedHealth were concerned about their physician’s ability to know when a genetic test is needed and interpret it, the confidentiality of test results and about possible discrimination. In 2008, the federal Genetic Information Nondiscrimination Act strengthened consumer protections regarding genetic information as it relates to people’s employers and health coverage.

Rapid advances in genetic testing have made it applicable for more people and decreased the average price. Genetic testing is currently available for about 1,800 conditions and three to five new tests become available monthly, the study found.

Tom Bologna, chief executive of Response Genetics Inc. in Los Angeles, said his company is working on molecular diagnostic tests that help determine the appropriate drug therapy for cancer patients. “These can be $100,000 treatments, and for a few thousand dollars we can identify those patients where the drug has real value,” he said. “This has all changed very quickly.”