Do You Have “Doomsday Genes”?

By Ed Leefeldt, CBS NEWS MONEYWATCH

February 28, 2018

https://www.cbsnews.com/news/do-you-have-doomsday-genes/

Signing up for a genetic test to learn about your ancestry could also hand you a crystal ball to foretell your future. But it may be information you’d rather not know. 

The test can indicate if you carry what geneticists call, “doomsday genes.” Are you predisposed to late-onset Alzheimer’s? Prone to the progressive muscular deterioration of Parkinson’s? Or, if you’re a woman, do you carry the BRCA gene, often a precursor of breast and ovarian cancer?

Genetic testing has been available at doctors’ offices and hospitals for almost 20 years. But now it’s as simple as purchasing a kit from a “personal genomics and biotechnology company” such as 23andMe for $199 and mailing back your cotton cheek swab in the enclosed wrapper. These kits are frequently advertised on TV and are extremely popular.

Knowing your ancestry, be it African, Asian, European or Native American, is one thing. But learning early about future disabling diseases is another. Those who provide their sputum — and more than 2 million people do — can get ahead of the curve and buy life insurance if the results show the future looks short. Or they can obtain long-term care (LTC) insurance if it’s likely they’ll spend their final years in a nursing home, where annual costs now average nearly $100,000.

Painful as it may be to have the answers, it gives those in midlife the opportunity to hedge against what could amount to costly medical expenses.

But this knowledge doesn’t go over well with the insurance companies offering these policies. It gives the policyholder an advantage the insurer doesn’t have: an indication of what the future holds. Insurance companies — particularly those that offer LTC — take a risk offering these policies. Insurers know the percentage of the general population that will become ill or die at a particular time in life, but they don’t know who exactly.

And that’s why geneticists like Robert Cooke-Deegan have said cheap and easy genetic testing scares insurance companies. “They say it could put them out of business,” he explains.

LTC insurance is already burdened financially, and some insurers that used to offer it are no longer in business. MetLife (MET), Prudential (PRU) and Unum (UNM) have shuttered most, if not all, of their LTC operations. And just last year two Pennsylvania LTC insurers went bankrupt. While LTC policy rates continue to rise, the benefits they offer become fewer. Genworth (GNW) is still the giant in the industry, but has hinted it too could bow out.

So it’s not surprising that insurers could be more curious than you about your genetic makeup. A recent story on genetic testing in Leader’s Edge, a magazine for insurance agents and brokers, said: “These tests offer an opportunity to game the system and apply for LTC insurance without the insurer knowing the true nature of the risk.” 

The article went on to say that the crisis for insurers will only get worse as baby boomers age. Each day another 10,000 Americans turn 65, and more than two-thirds of them will need long-term care at some point. The annual cost of caring for Alzheimer’s patients is currently $56,000 a year, and approximately 15 percent of the population over age 70 have been diagnosed with it.

Will insurers really try to find out about the flaws in your DNA? Their ability to do so is limited. State and federal laws like the Genetic Information Nondiscrimination Act specifically forbid health insurers from discriminating against anyone because of a genetic predisposition to a particular disease. And some states allow those tested to keep all medical information private under the Health Insurance Portability and Accountability Act. 

But other laws offer opportunities to obtain it. Newborns are tested at birth when paternity is in question, criminals are tested and clinical trial volunteers surrender the right to keep their DNA results private.

Consumer advocates claim insurers would troll for this type of information any way they could. In one recent case, a 46-year-old woman in good health was surprised and upset to learn she had been denied life insurance. She believes it resulted from a visit she made to a genetic counselor after learning her mother tested positive for the breast cancer gene.

“Most people don’t think that taking a genetic test could ever come back to bite them, but it can,” said President Jamie Court of Consumer Watchdog.

Insurers rebut his assertion. “Life insurers are not looking to deny people coverage,” said spokesperson Jack Dolan of the American Council of Life Insurers. “We are in the business of selling policies and have every incentive to insure as many people as possible.”

Said Genworth Senior Director Julie Westermann:  “We do not ask about genetic testing on our applications nor do we request [this] information from applicants or their doctors.” But she went on to say that Genworth would see the results if they were included in an applicant’s medical records that come directly from an applicant’s physician.

This raises an important question. If a patient goes to a medical facility and asks for genetic testing or offers DNA information to a doctor, should the doctor or hospital be required send it on to the insurer? Should LTC policy applicants themselves be required to send it before buying the policy? And what happens if they don’t and the insurer finds out? Is the contract void because the policyholder lied?

While term-life insurance has become easier to buy — often with an online application and no blood test — LTC insurers can still require an extended family history regarding what the parents died from or which diseases run in the family, similar to a verbal genetics test. Cooke-Deegan has suggested that simply filling out a complicated application could be used as a test of cognitive impairment, a precursor to Alzheimer’s and dementia.

When it comes to consumers buying genetic testing services, the U.S. General Accounting Office warns that these “swab the cheek” tests could be dangerous, irresponsible and deceptive. Even AARP urges people not to seek out gene testing without a doctor’s support. And some countries have outlawed them.

But tens of millions of these kits have already been purchased by people curious to know where they came from. The advantage of taking a 23andMe genetic test is that it doesn’t produce a medical record available to insurance companies. 

Still, how accurate is the test? On the issue of ancestry alone, results from 23andMe can differ from those of a competitor such as AncestryDNA, which sold 1.5 million tests during the last Thanksgiving Day holiday weekend alone.

AncestryDNA said it focuses strictly on heredity rather than “doomsday genes,” and its tests are usually cheaper. But many people believe it’s important to know the future as well as the past, and they take this information seriously. 

One such person who decided against taking any chances was actress Angelina Jolie. After learning she had a high risk of breast and ovarian cancer, Jolie underwent the radical procedure of a double mastectomy, as well as having both her ovaries and fallopian tubes removed.

• Ed Leefeldt is an award-winning investigative and business journalist who has worked for Reuters, Bloomberg and Dow Jones, and contributed to the Wall Street Journal and the New York Times. He is also the author of The Woman Who Rode the Wind, a novel about early flight.