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Karen Telleen-Lawton: Genetic Testing

Last Christmas my daughter presented each of us with identically wrapped small boxes. Could be socks, a framed photo, or a light book. Shaking revealed nothing. It turned out to be a genetic testing kit: my own private guide to the family tree.

I was enthusiastic about learning more about myself, in ways both trivial and meaningful. But I was concerned about privacy.

Genetic testing in the age of Big Data is pregnant with big issues:

On the ancestry side, you might no be the child of the man who raised you. On the health side, what if you are found to carry a marker for early onset Alzheimer’s?

Then there’s privacy: Who else might have access to your data, and what might they do with it?

Since 2008 it has been illegal for medical insurance providers in the United States to use genetic information in decisions about eligibility or coverage. But the law is heavily nuanced.

Companies with fewer than 15 employees are exempt from the Genetic Information Nondiscrimination Act (GINA), and it doesn’t cover military, veterans, or Indian Health Service.

Importantly, GINA does not apply to other forms of insurance, such as disability insurance, long-term care insurance, or life insurance. Companies that offer these policies can request the results of any genetic testing when making decisions about coverage and rates.

It is possible that genetic information, including the results of direct-to-consumer genetic testing, could become a standard part of the risk assessment insurance companies use to make coverage decisions.

Scholars and professionals are concerned about this clash between the rights of insurers and consumers.

A webcast at the Wharton School of Finance in 2018 brought together statistics professor Jean Lemaire and Arupa Ganguly, a genetics professor who runs Genetic Diagnostic Laboratory at the Hospital of the University of Pennsylvania.

Insurers, they noted, are at a disadvantage in areas like long term-care insurance (LTCI) if people know their risk for Alzheimer’s and then purchase coverage without disclosure.

Long-term care insurance is in massive flux now, with the number of companies offering LTCI shrinking from 100 to 12 in the last decade or so.

On the other hand, the purpose of insurance is to spread risk among a large pool of people. The more insurers can exclude potential risk, insuring only the lucky ones, the less value insurance has to society. Ganguly admits, “I don’t have a solution without a universal health care system or something like that.” Indeed.

Despite the risks, I did send in my saliva sample. When my results came, I completed several tutorials about genetic markers to access certain information. For my kit, disease markers were available for about 10 diseases from macular degeneration to Parkinson’s and Alzheimer’s.

Fortunately, I had no markers; only an elevated risk for celiac disease, which I’d already known. I’m not a carrier for anything, even Maple Syrup Urine disease. True fact!

Other quirky revelations were pretty interesting. My genes mark me as someone who is prone to motion sickness, can match musical pitch, and is less likely to be bitten by mosquitos.

Most of the 25 identified traits were true. A few were just wrong: I do like the taste of cilantro, and I have thick hair.

On the ancestry side, I discovered more than 1,000 relatives around the world. My niece confirmed we are related. A few distant cousins live in countries where I didn’t know I had heritage, and I have chunks of third cousins in U.S. cities I’ve never visited. I have not followed up on these or allowed my gene record to be shared with anyone on my tree.

If you buy a kit, there are options to satisfy various goals. Some kits focus on health information, others on ancestry, and a few are comprehensive. The sidebar (below) shows some of the more popular options.

Palm readers and horoscope writers have been showing us our past and future for millennia. Now you can find out what spit readers reveal.

Popular DNA kits

AncestryDNA: $99, best for cousin matching, most geographic regions for ethnicity.

FamilyTree DNA: $79-$199, best for serious genealogy, YDNA and mtDNA tests.

MyHeritage: $69, best autosomal test on a budget.

23andMe: $99 ancestry-$199 plus genetics, best for genetic health screening, not genealogy.

Living DNA: $99, best for roots in British Isles.

From smarterhoppy.com, January 2019.

— Karen Telleen-Lawton serves seniors and pre-seniors as the principal of Decisive Path Fee-Only Financial Advisory in Santa Barbara. You can reach her with your financial planning questions at [email protected]. Click here to read previous columns. The opinions expressed are her own.

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