JEA Q1 2020

DIY Genetic Testing: Opportunity for EAPs

By Tamara Cagney

An employee leaves a message on the EAP line: “I just found out I have a sister!” Another employee comes in for the first session and exclaims: “My Dad is not my Dad, I’m not Italian and I have 3 brothers”. An employee who knows he was adopted sends in a spit sample to learn about his ethnicity and discovers he has a full sister. “She was at MIT 5 years after I was”.
“I thought it’d be fun to learn a little about my genetic ethnicity, to trace how all the pieces came together.” But she ended up getting far more than she bargained for. When she went on the AncestryDNA site to view her DNA matches, there were no connections between her and her father.

Recreational Genetics
Business has never been better for what’s often called “recreational genetics”, and that includes opportunities for EAPs. More on that later in this article.
Traditionally, public records including birth and marriage certificates, census statements, interviews and immigration data were the main sources of information for making ancestral links.
But today Ancestry, 23andMe, MyHeritage, and smaller competitors have analyzed the genes of more than 26 million people worldwide, according to a study published by the MIT Technology Review.
People pay around $100, spit into a vial and ship it off to a company that then adds their DNA to vast and ever-expanding databases. According to a Pew Research Center survey, roughly one-in-seven U.S. adults (15%) say they have used a mail-in DNA testing service from a company such as Ancestry.
Most of them say they did so to learn more about their family origins, and a notable share (about four-in-ten) are surprised by what countries or continents their ancestors came from. Roughly a quarter (27%) of those people have used mail-in DNA testing learn about close relatives they didn’t know about previously.

Will I Develop Cancer?
“When I got engaged my fiancé and I decided to take an at-home genetics test from 23andMe, just to find out if we had any health risks we should know about. My mom had Alzheimer’s, which particularly concerned me. When my risk came back at 12.5 percent I had no idea what that meant for my future”.

Discovering family secrets is jarring but another area of concern is the medical information you can discover regarding risk of inherited diseases or conditions. Imagine opening your results late at night on your computer and reading that you have an increased risk for dementia, cancer, or heart disease. There is scant support offered in these areas. What does this mean? Is it certain?
While a direct-to-consumer genetic test can estimate your risk, it cannot tell you for certain whether you will or will not develop certain forms of cancer, Alzheimer disease, or other conditions. Many other factors, including gender, age, diet and exercise, ethnic background, a history of previous cancer, hormonal and reproductive factors, and family history also contribute to a person’s overall risk of disease.
These factors would be discussed during a consultation with a doctor or genetic counselor, but in many cases they are not addressed when using at-home genetic tests.
Employees may make important decisions about disease treatment or prevention based on inaccurate, incomplete, or misunderstood information from their test results. Patient advocacy groups strongly recommend that people considering using DIY genetic testing for Alzheimer disease, cancer or other conditions talk with a genetic counselor about the reasons they want to undergo testing and how they would cope with the results.

It’s Harder to Keep Secrets
We dance round in a ring and suppose, but the secret sits in the middle and knows.” - Robert Frost.

Sending in DNA samples can abruptly reveal long-kept family secrets ― affairs, donors, adoptions, long-lost siblings or entire new branches of a family. Both 23andMe and AncestryDNA have warnings about uncovering unanticipated information about family in their terms of service. One of the biggest benefits of at-home DNA testing—its speed and ease—can also cause emotional whiplash. Forget painstakingly combing through documents. New relatives can appear with the click of a mouse.

Opportunities for EAPs
It does not take much imagination for an EA professional to figure out what an impact this will have at work. A flood of personal phone calls? A struggle with depression and loss of identity? Negative emotions, such as fear, anger, stress, hostility, sadness, and guilt?
Are employees spending more time thinking about who to confront or how to reach out rather than focusing on their work? This type of disruption can interfere with productivity and performance, impact physical and emotional health, and affect relationships at work and home life.
The popularity of DIY genetic testing offers several opportunities for EAPs:

* Offering proactive education. Educating leadership and employees about the popularity and impact of “recreational” genetic testing will require EA professionals to be proactive. Some organizations are even starting to offer genetic testing as an employee benefit. Levi Strauss & Company introduced genetic testing as a benefit for employees at its San Francisco headquarters last fall: free genetic screening to assess their hereditary risks for certain cancers and high cholesterol.
Of the 1,100 eligible Levi’s employees, more than half took the genetic tests. Instacart, Nvidia, OpenTable, Salesforce, SAP, Slack, Stripe and Snap, General Electric Appliances and Visa have also offered the screenings as an employee benefit.

* Explaining risks and benefits of testing. Whether your company offers testing as a benefit, or individual employees are exploring on their own, there is agreement among the experts that education on the pros and cons of testing should be provided to employees. Employers should be encouraged to offer consumer information to employees in this rapidly growing area.
As noted earlier, it doesn’t require a lot of imagination for an EA professional to see how genetic testing might be on an employee’s mind in terms of stress, presenteeism, and other factors. Presenteeism alone is a good reason for a skeptical employer to consider having the EAP present educational trainings on this topic. EA professionals can reach out to find knowledgeable experts to provide proactive Brown Bag sessions on risks and benefits of DIY genetic testing.

* Providing consultation. EAPs are also ideally positioned to provide initial consultation to those considering testing and encouraging that all medical results be reviewed with medical personnel. EAPs also have an important role to provide counseling when buried family secrets are revealed.
EA professionals should encourage discussions about what people are looking for, what they will do with surprising information, and how this seemingly recreational testing may impact them and their families.
The following three sections illustrate examples:

1. Not Just Adoptees
Historically, birth mothers were counseled to ‘put it in the past, forget about it, and get on with your life’ and encouraged to believe that they are “giving their child a better life and it is best not to disrupt that life.”

In recent decades, professional advice to parents putting a child up for adoption has changed, and adoptive parents are now more likely to opt for open adoptions from the beginning and to be empowered to contact their biological children.
For many people who know they were adopted or conceived with assistance from donor sperm or eggs, gene testing finally gives them the information they need that was previously in sealed adoption records.
They now have a way to search for biological siblings and parents without a paper trail from an adoption agency or fertility clinic. Today they can opt into large online databases like 23andMe and Ancestry.com and find biological relatives who have also had genetic tests. Even if parents desire secrecy, the advent of home tests has made that a risky proposition.

2. The Search for Self
“I looked in the mirror, and I didn’t know who I was anymore,” she says. “Every Hispanic person I saw on the street, I thought, ‘Are you my cousin?’ ”
“In a few short months, I went through a complete identity shift, lost my connection with my heritage, gained a brother and was looking up pictures of my biological father.”

Half a century into her life, a client’s familial and cultural identity can change in an instant. For many people not expecting to find any surprises in their DNA, the experience of mailing off a sample and discovering that their family is not as they thought it was can be profoundly disorienting—even life-changing
There’s an Ancestry ad where a man trades in his lederhosen for a kilt. And another where a woman traces her ancestry to the matriarchal Akan people of Ghana to conclude, “When I found you in my DNA, I learned where my strength comes from.” And yet another where a man bonds with his Irish neighbor after finding out his own DNA is 15 percent Irish.
But losing your cultural identity can be traumatic.
Cultural identity is the identity or feeling of belonging to a group. It is established on the core values shared by a group – values that include language, style of dress, their way of talking, habits and many others. Counselors recognize that it is important for people to feel a sense of national identity and to be able to identify with and belong to social or ethnic groups. It’s difficult to predict how someone will react when the story of their life is rewritten. Genetic testing results can shake some individuals’ foundations.

3. The Surprise Affects Everyone
“My sisters were freaking out. They didn’t want me to say anything,” an EAP client says. “They said to keep it a secret. Why do you need to know? Why open the door? Why open the can of worms?”

There are people who have walked this path like Catherine St Clair, who discovered through Ancestry.com that her biological father wasn’t the same person who raised her. St Clair founded an online support group and has a mantra for these situations. “I’m sorry,” she says, “I’m not a cause of the problem. I’m the result of it.”
Still, she is sympathetic to the upheaval these revelations can cause. “You have to try to put yourself in the shoes of this person who’s about to be blindsided. There’s an adult out there that is their child that they never knew about. Maybe they had an affair at the beginning of their marriage and they changed their ways ... this is going to cause a major tear in their family. It could. We always try to prepare for the worst.”
But the fallout from discovering that your genetic identity isn’t what you expected isn’t just an internal struggle. Friends and family can be less than supportive. DNA results don’t just reveal unexpected dads. There are many people who’ve discovered so-called “secret siblings,” proof of their father’s (and sometimes mother’s) infidelities. The choice of whether or not to reach out to these half-brothers and sisters is always a difficult one as reactions are never predictable.

Suggestions for EA Professionals

* Remind employees there can be a reason why something is secret. Family secrets are as old as families. The reasons for keeping them haven’t changed much. To cover up a lie. To protect someone. To avoid social stigma. These secrets otherwise would have—or even did—go to the grave. The generation whose 50-year-old secrets are now being unearthed could not have imagined a world of mail in DNA kits. DNA tests have unearthed affairs, secret pregnancies; quietly buried incidents of rape and incest, and even fertility doctors using their own sperm to inseminate patients.

* Encourage employees to see a counselor first. While EAPs don’t often get the chance to offer guidance before the employee receives surprising news, it is helpful to suggest that everyone considering sending away for a 23andMe kit, or using a company benefit for genetic testing, they should see a counselor like an EA professional – who can recommend taking time to think about the potential fallout and what the results may mean. Anyone who submits their DNA to these websites is opening themselves up to surprising and discomforting revelations.

* Ask employees to address key questions about testing. As the Centers for Disease Control and Prevention puts it: Think before you spit.
* Start with, “What am I looking for?”
* Consider what genetics mean to your identity and think about your goals in exploring your DNA history.
* What role should DNA play in your sense of self or identity?
* Where do your rights to learn these secrets end and the rights of others to keep them begin?
* Does the right to know the truth about one’s lineage supersede the rights of those who seek to conceal the truth?
* What constitutes a family?
* Do you have family members you trust to talk to about anything you might uncover?

* Warn employees about stress and anxiety risks of testing. Direct-to-consumer genetic testing for Alzheimer disease or cancer risk can be stressful and anxiety-producing. Health organizations and patient advocacy groups strongly recommend that people considering genetic testing for gene variations, including those included in direct-to-consumer genetic tests, talk with a medical genetic counselor about the reasons they want to undergo testing and what the results could mean for their health.

* Tell employees that resources can be scarce …Unfortunately there aren’t many psychological resources available for people who stumble across family secrets with DNA testing—or even for those who want to use the tests to shine a light on complicated family matters they already know about. Perhaps counselors who specialize in adoption, which does have some overlap with assisted-reproduction families, are the most familiar with some of the issues. But donor conception has unique issues as does uncovering long-buried family secrets.
Other suggested resources include:

* Genetic Literacy Project: Knowledge Without Context: Why Consumer Genetic Tests Can Spark Needless Fears, Behavioral Changes
* Yale Medicine: Is an At-Home DNA Test an Ideal Gift, Really?
* Your DNA Is Not Your Culture, https://www.theatlantic.com/science/archive/2018/09/your-dna-is-not-your-culture/571150/, Sarah Zhang, September 25, 2018

… While recognizing there are online forums
One result of uncovering family secrets with the development of gene testing is the online communities that have sprung up around adoptees and donor-conceived people. There are closed groups on Facebook as well as websites and wikis: We Are Donor Conceived, DNA for the Donor Conceived, the Donor Sibling Registry, DNA Detectives and DNAadoption.com, to name a few.
Individuals have become activists in this arena. Catherine St Clair started a group on Facebook called DNA NPE Friends, where NPE refers to “not parent expected.” (NPE comes from the genetic genealogy term “nonpaternity event,” which St Clair and others have refashioned to include both parents; another increasingly common term is “misattributed parentage.”)
“People don’t get that it really is a significant trauma,” says St Clair, “You feel completely alone and isolated. It’s like having an infection that’s deep under your skin that keeps festering and it’s painful and it’s getting worse and worse. Only after it’s exposed to air can it start to heal.”

Dr. Tamara Cagney is the immediate past president of EAPA. She has provided Employee Assistance Program (EAP) services for over 40 years in both the public and private sectors, in unionized and non-unionized settings. Tamara is the chief trainer for EAPA’s two-day trainings for DOT substance abuse professionals (SAPs) focused on assessment, level of care, and follow-up testing determinations and return-to-work issues for DOT-regulated employees. For additional resources about DIY genetic testing or other information, contact Tamara at tcagney@sandia.gov.