Genetic testing for disease heredity gains favor

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Kim Kozlowski / The Detroit News
The sequencing of the human genome has revolutionized scientists' ability to better understand hereditary diseases and created more opportunities for people to get tested.

But as genetic information further increases understanding of health, researchers are starting to ask: Do people want to know if they are predisposed to a disease, even if there is no cure?

Two recent studies indicate the answer is yes -- even though the medical establishment is apprehensive about predictive testing on children for incurable diseases.

Contrary to concerns that genetic testing for Alzheimer's disease might cause angst among people who discover they are predisposed, most did not suffer any major distress, a University of Michigan study showed in July.

Meanwhile, more than one-third of parents say they would be interested in knowing if their children might develop a disease for which there is no cure, according to a study published last month in the online edition of the journal Pediatrics.

"The ability to know things is coming," said Beth Tarini, assistant professor of pediatrics at the University of Michigan Medical School and author of the study on genetic testing of children.

"The question from the medical community is, 'How do we deal with this because we no longer are going to be the gatekeepers?' "

There are several kinds of genetic testing, said Emily Edelman, project director of the National Coalition for Health Professional Education in Genetics.

Genetic tests are used to predict diseases and to diagnose symptoms.

But a growing number of companies are offering direct-to-consumer genetic tests for analysis of predisposition to a number of diseases, such as Type 2 diabetes, restless leg syndrome, Parkinson's and other diseases.

Though some companies involve doctors, many bypass the medical establishment, giving consumers the power to seek out personal genetic information by ordering kits online and sending saliva directly to testing labs.

The Genetic Information Nondiscrimination Act, which went into effect this year, bans discrimination of individuals by insurance companies or employers based on information detected by genetic tests.

With companies giving people a choice and federal law offering protection, people are interested in getting genetic information because it helps them make life decisions.

"I realize with this knowledge I really need to live my life fully in the moment," said Solange Muller, who found out in 2005 that she has a 52 percent chance of developing Alzheimer's by the time she reaches 85.

Muller always knew she was at risk because her mother developed the incurable disease when she was 65. Though the test results shook her at first, she used the information to start doing things more often that she enjoys, like traveling and visiting museums.

"I really changed the quality of my life," she said.