genetics

Black and Hispanic Americans are especially vulnerable to Alzheimer's disease. Yet they're often underrepresented in scientific studies of the disease.

So on a cool Sunday morning in Cleveland, two research associates from Case Western Reserve University's School of Medicine have set up an information table at a fundraising walk organized by the local chapter of the Alzheimer's Association.

"We are looking for families, minorities and people with early onset," Leah Cummings tells passersby who are waiting for the walk to begin.

More than a million Americans have donated genetic information and medical data for research projects. But how that information gets used varies a lot, depending on the philosophy of the organizations that have gathered the data.

Some hold the data close, while others are working to make the data as widely available to as many researchers as possible — figuring science will progress faster that way. But scientific openness can be constrained b y both practical and commercial considerations.

Three major projects in the United States illustrate these differing philosophies.

When Lalita Manrai went to see her doctor for treatment of kidney disease, she noticed that some of the blood test results had different "normal" ranges for African Americans compared with everybody else.

When she asked her doctor which range applied to her — a woman born in India — he said the "everybody else" category was actually based on a study of Europeans, so neither category was right.

Instead, he said, he calculated "normal" for her by averaging the two values.

Wanted: A million people willing to share their DNA and 10 years of health habits, big and small, for science.

Senators Target Use Of Genetic Information

Feb 7, 2018

With sponsor Aaron Bean, R-Fernandina Beach, saying the proposal is about “freedom and privacy,” a Senate committee Tuesday approved a bill that would bar life insurers and long-term care insurers from using customers’ genetic information in decisions about writing or canceling policies.

Scientists have unlocked the secret to why so many supermarket tomatoes are tasteless. The findings mean there’s hope for delicious, marketable and affordable tomatoes. The miracles of modern agriculture mean tomatoes are available nearly year round. But ever wonder why those supermarket tomatoes turn out mushy and flavorless? That’s because growers favor bulky tomatoes with high yields and long shelf lives, and flavor got lost along the way.

Associated Press

Holding out the promise of major medical breakthroughs, President Barack Obama on Friday called on Congress to approve spending in medical research that tailors treatment to an individual's genes.

Obama wants $215 million for what he's calling a precision medicine initiative that moves away from one-size-fits-all treatments. The ambitious goal: Scientists will assemble databases of about a million volunteers to study their genetics — and other factors such as their environments and the microbes that live in their bodies — to learn how to individualize care.

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STEVE INSKEEP, HOST:

A high-profile genetic medical testing company is in trouble with the federal government. The Food and Drug Administration has asked 23 And Me to temporarily halt its work.

As NPR's Rob Stein reports, the FDA has accuracy concerns.