Author: Andie Burjek

I recently was reminded of just how new the field of genetics is and how the discussions about genetic privacy are fascinating and relevant in the workplace. That’s where genetic-testing benefits or perks are sometimes touted as a way for employees to learn about genetic risks they have and plan for them accordingly.

I finally started reading The Gene — a New York Times bestseller by Siddhartha Mukherjee from 2016. The Gene is about the history of genetic theory and history from Aristotle and Pythagoras to Charles Darwin and Gregor Mendel and beyond. It also explores darker parts of genetic history like the eugenics movement in America and Nazi Germany’s attempt to create a so-called genetically superior race.

This 550-page-long page-turner was in part a celebration of significant scientific discoveries in genetics and in part a warning that people are capable of using these discoveries and theories to do major harm.

In 1976, Herb Boyer and Robert Swanson founded biotech company Genentech and created many important medicines out of genes, including insulin, and patented these creations. But their contemporaries wondered, is it right to patent a method you discovered while funded by public research money? Also, can you patent something that naturally is a part of every person’s body? Even now, many people have ethical objections to patenting genes.

In the 1800s Charles Darwin observed different-looking finches of the same species. He was fixated on their similarities, not their differences. This led to important discoveries in hereditary theory, mainly that these different-looking birds came from the same ancestor and adapted over time to different environments. The same could be applied to people, who were more similar than different and came from the same common ancestor.

On the other side of the coin, Darwin had a cousin, Francis Galton, who was also a scientist. He was more fixated on people’s differences than similarities and coined the term “eugenics” in 1883, according to The Gene. This was the idea that some people’s genes were better than other’s and that through selective breeding, humankind could keep only the best genes in its genepool. His idea eventually led to a eugenics movement in America in which undesirable people were forcibly made infertile so that their inferior genes were not continued. These “undesirables” included African Americans, white European immigrants and anyone deemed “feebleminded” by the courts, the book notes.

These are older examples from the book, but obviously a lot has happened from the 1980s on, like the Human Genome Project, experiments (some more successful than others) in gene therapy and many services that offer easy-to-use genetic testing kits like 23andMe, Ancestry DNA and Vitagene.

Genetic tech has entered the workplace. Some companies are offering genetic testing as a perk. Last March, Rep. Virginia Foxx introduced a bill, HR 1313, which would allow employers to offer health insurance premium rebates to employees who take part in workplace wellness programs, many of which include genetic screenings.

This led to some controversial reactions when some people worried that their companies could financially coerce them into genetic testing. News site Vox reported that those who opt out would have to pay $5,400 more a year for the average family plan than those who opt in, based off 2016 insurance price data. This sum might make opting out not viable to some employees. Advocates of the bill stressed that employees would have the option of opting in or opting out.

Let’s take this scenario above. The fundamental question, it seems, is that if this participating employee pays $5,000 less than a non-participating employee, is it truly optional? Is there a difference between a penalty and a reward in this context?

I’m inclined to say no, especially if genetic information is involved. Others would strongly disagree.

Here’s the most recent news on HR 1313 I could find, according to the DNA Geek:

“The bill has been lingering in various committees in the House of Representatives since it was introduced in March [2017]. It passed the Committee on Education and the Workforce back in the spring, but it’s been stagnating in the committees on Ways and Means and on Energy and Commerce since then. … On 11 December 2017, both committees ‘discharged’ the bill, meaning that they released it to be considered by the full House of Representatives without voting on it themselves. The bill is now on the House schedule to be considered for passage.”

The next steps would be passed by the House, passed by the Senate and then signed by the president.

Whatever your take is on HR 1313, it shows how tricky and messy issues involving genetic security and privacy are. There are others more qualified than me to talk about the controversies and disagreements in the genetics space. But for employers and employees, this debate over personal health and genetic information is noteworthy.

In the United States, the law that governs genetic privacy is the Genetic Information Nondiscrimination Act. GINA makes it illegal to discriminate people based on their genes in certain employment decisions and health insurance, but not outside those realms, like in life, disability or long-term care insurance. There have been cases, for example, where women have been denied life insurance as recently as 2016 because they tested positive for the breast cancer gene, BRCA1.

As LifeInsurance Post, a community of life insurance experts, warns, “The negatives of genetic discrimination far outweigh the positives. Thus, it’s important that you seriously consider whether you need to go for genetic testing or not. At the end of the day, it’s comes down to choosing between your life and life insurance.”

Even if you take a test in the workplace and your results cannot impact your employment or your health insurance, it could impact other types of insurance.

To get the life insurance industry’s point of view, by the way, read this Economist article, “The gene is out of the bottle: Genetic Testing Threatens Insurance Industry.”

“Asymmetry of information — when the consumer knows more than the insurer — is the industry’s worst nightmare. If predictive tests further improve and become more common while non-disclosure rules stay in place, some insurance products might eventually die out,” writes the author. This article does a good job at explaining the concerns of the insurance industry, while it also acknowledges what a tricky ethical area this is. Since the role of genes in disease development is still being studied, many people could be wrongly penalized for having a certain gene. The truth is that many other factors, like environment and chance, also impact whether or not a person will ultimately develop the disease.

Genetic privacy isn’t a fear that’s going away; it’ll only grow as our capability and understanding of genetics increases. It’s also not a fear based in fiction. Historically influential forces in society have used genetics to rationalize doing horrific things.

As someone who talks to employers on a regular basis, I believe most companies would not lean toward unethical use of their employees’ genomes. That being said, even a few bad eggs would be troublesome.

“This book is the story of the birth, growth, and future of one of the most powerful and dangerous ideas in the history of science,” writes Mukherjee in The Gene. Let’s not underestimate the power of this idea. As employers increasingly see a place for genetic tests somewhere in their organization, some employees may be very enthusiastic to take advantage of them while others may be justifiably weary.

Andie Burjek is an associate editor at Workforce. Comment below or email editors@workforce.com.

It’s my first blog of 2018, and, boy, are we off to a quick start! I’ve mentioned before my keeping track of the EEOC vs. AARP wellness incentive disagreement, and we got some action on that in late December. Meanwhile, I’m deep in research about two meaty topics for which I’d love to gauge your thoughts.

Let’s begin!

Wellness programs took a hit recently when a federal judge ruled that an Equal Employment Opportunity Commission rule regarding incentives will be nullified as of Jan. 1, 2019.

A few different wellness companies told me their reactions to this news, and, to my surprise, not all of it was panic or negative. They were fairly varied.

The rule in question defined the word “voluntary” in relation to wellness programs. The Americans with Disabilities Act and Genetic Information Nondiscrimination Act limit what information employers can ask for from its employees. But in a voluntary wellness program employers can get around some of those limits because the program is voluntary.

The EEOC rule allowed wellness programs to be voluntary if the incentive or penalty was no more than 30 percent of the cost of the health plan.  In his initial decision, Judge John D. Bates, Senior United States District Judge of the United States District Court for the District of Columbia, said that the 30 percent incentive “is the equivalent of several months’ food for the average family, two months of child care in most states, and roughly two months’ rent” and said that the “fee of that magnitude could be especially coercive to lower-income employees and people with disabilities, who on average have lower incomes than those without disabilities,” according to the LA Times.

[Also read: “New Wellness Bill HR1313 Gets Flak for Genetic Privacy Concerns”]

One wellness vendor is celebrating this decision.

Outcomes-based programs are “pretty much dead,” and that’s a good thing, according to Al Lewis, CEO and co-founder of wellness education company Quizzify. He believes the judge was completely right in this decision.

“This changes everything. Without financial coercion, most employees aren’t interested,” he said in an email interview.

Employers should know that the ruling does not apply to all areas of wellness, just those involving medical exams and inquiries, he added. For example, fitness-based programs are still fine unless the company measures fitness.

Health risk assessments are also impacted, he added, as they would have to avoid medical inquiries. They could ask questions like, “How much broccoli do you eat?” or, “Would you like to receive information about diabetes?” but not “Are you depressed?” or “Do you have diabetes?”

Many vendors do not have the same celebratory attitude toward this regulation change. The ruling may be missing the boat, according to Henry Albrecht, CEO of engagement company Limeade. What some parties involved in this ruling call “coercion,” he calls “true support for whole-person well-being.”

[Also read: “Weighing the Value of Workplace Wellness”]

“Ultimately, companies running science-based programs with flexible technology and incentive systems shouldn’t lose sleep over the new EEOC changes. We’re not,” said Albrecht. “Programs that improve employee well-being aren’t going away. They’re too powerful because they drive employee performance, engagement, retention and company profit.”

Meanwhile, Lauren Chana, director of legal services at Vitality Group, a Chicago-based wellness company, has a different attitude toward the ruling. Chana, who ensures that the company’s program and their employer clients are compliant, is not concerned about the ruling, but curious.

“This opens a lot of doors for questions and uncertainty for employers,” she said. “For example, this ruling does not impact the ACA. The EEOC Wellness Rules, presumably, were designed to align with the ACA, but that will change. I am most curious to see the approach the EEOC and courts take to make this a practical rule moving forward.”

She also stressed that this does not have a big impact employers yet. The new rules don’t go into effect until Jan. 1, 2019, and “we haven’t a clue what the compliance date will be from there,” she said.

“With any new area, regulations are bound to go through a level of growing pains,” she added. “Employers will just need to be ready to keep adapting and adjusting until the regulations are able to strike the needed balance between the purpose of wellness, protection of employees and operational feasibility for employers.”

Each new development in wellness programs, whether by regulation or court cases, is pretty significant, said Calvin Chambers, an attorney at Hall Render, the nation’s largest law firm focused exclusively on matters specific to health care organizations.

After the initial EEOC rules came out, employers had some sense of certainty with regulations, he said. What they should expect now is that the incentives will either remain at 30 percent or lessen.

Employers who use wellness vendors for their programs may be confused at what to do next with plan design. A recent webinar addressed employer concerns and made suggestions for how they can make sure they can continue their programs. More on that in a future post.

Feel free to comment below or tweet at me @Andie_Burjek if you have any thoughts on this topic.

Meanwhile, the next two posts I’m working on are related to two articles I’ve been assigned: The Future of Retirement, and the Demographics of Entrepreneurship. I’ll pose two questions now. If you have any thoughts or a response, feel free to share:

What are your personal retirement concerns?

Can benefits be incorporated in startups to retain a more diverse group of employees?

Thanks for reading!

Andie Burjek is a Workforce associate editor. Comment below or email editors@workforce.com.