Genetic Testing at Work

DNA strandsDo the rewards of genetic testing of employees outweigh the possible risks it presents to their financial stability?

This article by Carol Harnett, president of The Council for Disability Awareness, was recently published in Human Resource Executive.

I became intrigued with genetics in sixth grade. I still recall being fascinated when Mrs. D’Amato described Gregor Mendel’s work with pea plants that allowed him to unravel the fundamental laws of inheritance. Her introduction of the Punnett square, with its dominant and recessive alleles, and monohybrid and dihybrid crosses had me running home to decipher the keys to my ancestry with my parents.

Over time, I discovered that the MC1R gene was responsible for my red hair and freckles, and those traits, in combination with my blue eyes, placed me in the rarest of the ginger categories: a tribe that makes up less than 2 percent of the world’s population.

Genetics continued to grab my interest over the years, but that curiosity started to package itself with concern as more became known about human DNA. The first big pause I took to contemplate the impact of genetic information came when 23andme—one of the first direct-to-consumer genetic-testing companies—invited me to participate in a beta test.

It was 2008 and I was about to attend my first TED conference. The company invited the 1,000 participants to learn about their genetic profiles. I let the 23andme package sit on my desk for about a week. My internal debate revolved around whether I wanted to know if I had a genetic susceptibility for which there was currently no treatment. I finally caved in to my scientific interest, spit in the tube, sealed the envelope and overnighted my DNA to the company.

The results were anti-climactic. It turns out I have a remarkably solid set of inherited “wellness” characteristics. Or, at least I think I do.

The other traits the initial report listed (and still lists over the 10 years of updates) were laughingly off, including that I most likely don’t have freckles or red hair. And this gives me some pause as to whether my reported wellness variables are, indeed, correct.

I began to consider writing a column about genetic testing when someone passed me a copy of a survey of 14 disability carriers regarding whether they would pay the claims of women who underwent procedures associated with testing positive for inherited mutations of the BRCA1 or BRCA2 genes. (Approximately 72 percent of women who inherit a BRCA1 mutation and about 69 percent of women who inherit a BRCA2 mutation will develop breast cancer by the age of 80, while about 44 percent of women who inherit a BRCA1 mutation and approximately 17 percent of women who inherit a BRCA2 mutation will develop ovarian cancer by the age of 80.) Experts often recommend that women who carry these mutations consider both preventive bilateral mastectomies and removal of their ovaries and fallopian tubes by their mid-30s to early 40s.

There was wide disparity in the carriers’ responses to how they would process claims. Some considered bilateral mastectomies associated with a positive genetic test to be related to a pre-existing condition and, therefore, not payable. Others believed that preventive mastectomies related to a mutation of BRCA12 were elective procedures. As a result, the disability claim was not compensable under the elective-procedure provision. Still others would deny disability associated with subsequent breast-reconstruction surgeries under the elective-surgery and/or cosmetic-surgery provisions.

The range of answers and the logic applied by some providers regarding BRCA12 mutation carriers were shocking to me. But, there was a moment of hope when I reviewed a similar question asked about disability claims related to organ donation.

When I first joined the disability-insurance industry in the late 1990s, an organ donor’s disability claim was denied under the elective-procedure provision. Almost 20 years later, all but one carrier stated they would approve an organ donor’s claim—and the one carrier that wouldn’t pay the claim indicated it often made an administrative decision to approve the claim despite the contract.

As genetic testing becomes more common, I believe the carriers will rethink their positions (at least as it relates to women who learn they have genetic mutations after they enroll in disability coverage), or employers self-insured for short- and long-term disability will instruct the carriers or third-party administrators to pay these disability claims.

But here’s the catch that is up for debate: If people find out they carry a genetic mutation before they sign up for life, disability or long-term-care insurance, are they subject to denial of coverage due to a pre-existing condition, even though the genetic mutation may never “express itself?” The answer may be a qualified yes, depending upon the carrier and/or the state in which the person lives.

The Genetic Information and Nondiscrimination Act of 2008 prohibits employers and health-insurance companies from discriminating against people due to genetic information. However, when the act was passed, life, disability and long-term-care insurance were consciously omitted. This omission allows life and disability insurers to legally discriminate against people with genetic conditions or risk factors that predispose them to diseases—which brings me back to direct-to-consumer genetic testing.

There is a new trend among D2C companies such as Color Genomics, which wants employers and HR leaders to offer genetic testing to employees as an employee benefit. And while I, like many with my background, see the power of genetics as it relates to precision (or personalized) medicine, I’m incredibly concerned about how employers could inadvertently destabilize their employees’ financial wellness.

If employees do not currently carry individual life, disability or long-term-care insurance prior to participating in genetic testing, and they find out they possess a genetic abnormality, they may never be able to enroll in this coverage in the future. Even if you provide employer-paid life and disability coverage to your workers, if they leave your employment, they may not take their life insurance with them—and their disability coverage is not portable…

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Caring for Employee Financial Health

Caring for Employee Financial Health

The Council for Disability Awareness is happy to announce the expansion of our blog to include topics of importance to employers.

Our goal is to create a discussion with human resource and business leaders. A discussion that covers all things related to the workplace and employee benefits.

One topic we will highlight more frequently is employers’ expanding focus on employee financial health and wellness.

The last several decades have changed the way employers think about and support employee financial health, but at what costs?

Employer-Paid Health Insurance: Back in the Day

Most of us have no recollection of the era when employers provided robust benefits for their workers, including pensions and employer-paid health insurance premiums. When the U.S. entered the 1980s and health insurance expenses exploded, benefits experts stepped back and realized employees were immune to the true cost of health care.

Employee Financial Health: Giving Them Skin in the Game

Five-dollar-physician visits skewed the reality of what doctors and hospitals charged insurance companies. Thus was born the concept of making employees have “skin in the game”. The belief was if consumers had to contribute more toward the actual costs, they would think carefully about overusing their health insurance benefits.

This philosophy of employee responsibility and cost-sharing drifted outward toward all employee benefits over time.

The capital-market crises in 2002 and 2008, new legislation and regulatory requirements for employer-provided pensions, plus a need in some industries to reduce benefits to compete in the global market placed the tradition of providing new employees with a traditional defined-benefit plan on the chopping block.

As a result, employee financial health suffered.

What Created the Drive for Employee Financial Health and Wellness Education?

Defined-contribution plans such as 401(k)s and 403(b)s are now the standard way employers provide workers with retirement planning.

Except the worry – and perhaps the guilt – employers have is that, despite contributions to DC plans, only 61 percent of employees say they are saving for retirement.

We see further proof of poor retirement planning by workers in a May 2017 Gallup survey. The results indicated 25 percent of millennials will rely on Social Security benefits as a major source of income during retirement. This is almost double the number who said this in 2007.

The near elimination of defined-benefit pension plans for new employees coupled with far less than 100 percent participation in DC plans created the current drive by employers for employee financial health and wellness education.

Employee Financial Preparedness

While I am a staunch advocate of making certain working adults plan for their futures, I worry about their present situation as well. Why? Far fewer consumers are financially prepared for interruptions to their incomes due to periods of disability – the most common of which are pregnancy and musculoskeletal-related absences – than they are for retirement.

The best way employees can financially prepare for periods of absence – usually temporary – is through short- and long-term disability insurance.

According to the Bureau of Labor Statistics, 40 percent of private-sector companies provided access to a STD plan and 39 percent of workers participated. And 33 percent of employers gave access to a LTD plan with 32 percent of employees participating.

So, if you offer a disability insurance plan, 97 percent of employees will participate. But, at least 60 percent of workers don’t have the option to receive this type of coverage through the workplace. This increases the risk for compromised employee financial health and wellbeing.

Are Employees Prepared?

The Federal Reserve released its Report on the Economic Well-Being of U.S. Households in 2016 in May 2017 and reported 44 percent of adults said they either could not cover an emergency expense costing $400, or would cover it by selling something or borrowing money. The median time an employee is out of work due to an illness, accident or injury is six weeks.

Given the Federal Reserve data, almost half of workers couldn’t afford an unpaid absence lasting more than a week without exhausting their sick leave or paid-time off. That’s if it is even available to them.

Employee Financial Health: Stories, Not (Just) Data

But all I’ve talked with you about so far is data. And while facts are important, stories are more memorable.

A few weeks ago, a friend asked me to attend a fundraising event for Kathie (name changed). She had to stop working due to symptoms associated with a rare autoimmune disease known as Wegener’s granulomatosis. This is a difficult condition to diagnose and it took months before the physicians figured out what was wrong. The good news is that while the medical team cannot cure Kathie, she has a reasonable chance of recovery and being able to work again. The bad news is it will take months of treatment to get her there.

I didn’t know anyone at the event other than my friend. So, I found myself speaking with a lot of different people and spent time hearing stories about Kathie.

I eventually came upon the organizer of the party who turned out to be Kathie’s boss. His compassion for Kathie’s situation touched me and I told him how remarkable I thought he was. At that point, he shared the guilt he felt.

He was a small employer and he couldn’t afford to provide much in the way of benefits. His employees received their health coverage through the public exchange, or their spouse’s insurance. It was too expensive a benefit for him to offer. But, he’d met with an agent about a year ago and asked if there was something he could for his employees. The agent presented two options: term life and disability insurance. He chose the term life plan.

The employer and most of his employees were in good physical health. In fact, Kathie completed a Tough Mudder competition (which involves running through 10 miles of mud and climbing over 20 obstacles) the month before her symptoms began. He thought none of them would ever need the disability insurance policy.

The Bigger Picture

It’s my belief that we need to expand how we think about employee financial health and wellbeing. Yes, we must help people plan for the future, but not at the risk of the present.