Genetic Testing Costs Coming Down but Do You Want to Know?

As you sit around the Thanksgiving table, an interesting conversation you might entertain is whether you would like your genes analyzed for $99 to see if there is some hereditary disposition you might have for disease thanks to those relatives you’re sitting with around the table.

23andMe, Inc. is a privately-held company dedicated to helping individuals understand their own genetic information using recent advances in DNA analysis technologies and web-based interactive tools. 23andMe enables individuals to gain deeper insights into personal ancestry, genealogy and inherited traits. 23andMe was founded in April 2006 by Linda Avey, Paul Cusenza, and Anne Wojcicki. 

The name 23andMe refers to the fact that human DNA is organized into 23 pairs of chromosomes. 23andMe connects individuals to their unique, paired set of 23 chromosomes.

• 23andMe has more than 400,000 genotyped customers.
• To date, the company has collected more than 200 million phenotypic data points (individual survey responses).
• On an average week the company collects approximately two million new survey responses from our active online research community.

I came across them in an article in Fast Company that poses some interesting ethical dilemmas.

The author, after some convincing, had her adopted daughter’s genes tested. Here is what she found out. 

“And there it is, screaming out at me from my computer screen. My daughter, who is learning to read and tie her shoes, has two copies of the APOE-4 variant, the strongest genetic risk factor for Alzheimer’s. According to her 23and­Me results, she has a 55% chance of contracting the disease between the ages of 65 and 79.”

Here’s more snippets from the article.

“In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA), which makes it illegal for health insurers and employers to hold a person’s genetic information against her. (YET) The confines of GINA don’t yet extend to long-term-care insurance. Several states have banned the discriminatory use of genetic information in all areas, but there is not yet any sweeping federal protection.” 

The article suggests that “a long-term-care insurance company might in the future ask a potential customer if she had genetic testing, and if the results linked her to a higher risk for Alzheimer’s disease.”

According to the article, upon learning of their APOE-4 status, people are six times more likely to alter their long-term-care insurance.
Don Taylor, an associate professor of public policy at Duke who has published research on the implications of genetic testing and insurance in Health Affairs, predicts that our current long-term-care insurance system is about to break. “They’re losing their shirts,” he says, pointing to the fact that Genworth temporarily stopped selling new policies completely in its biggest market, California. “Whatever we have now is not going to come close to existing when your daughter is old enough to buy it.” But nobody yet knows what might replace it.

So there you have it. All kind of issues from privacy to would you want to know to the implications for buying insurance or even having insurance.

Read the article then tell me what you think.