At the click of a button, you can discover a new identity.
Late last fall, John Warner, 56, received an AncestryDNA kit as a gift from his son and daughter. He set it aside to care for his brother, who was diagnosed with cancer and was deteriorating quickly.
Months later, he finally sent it in. When the results came back, he didn't initially comprehend the extent of the discovery that came with them. In hindsight, he says he might not have been ready to grasp what they meant. "I put it down for a solid two-three months. When I picked it up again, I thought whoa, this is something very strange here. Then I knew something was up."
The results led him to discover that a man he had initially thought was a distant relative was actually his half-brother. After Warner's initial shock, the revelation was not unwelcome. Both men were willing to meet and work through their shared history. They have since embraced one another. "We stay in touch frequently and are planning to get our kids together soon."
Warner's journey of DNA self-discovery worked out for him and his half-brother. But that's not always the case with unexpected matches on DNA testing platforms. DNA testing companies are under increasing pressure to alert customers of the risk. Now, with more and more people opting for the testing, the number of cases where the results are unwelcome is increasing. Mental health experts argue that support is crucial to helping people navigate these sudden, life-changing revelations, and that the companies who provide the testing need to take a more active role in alerting their customers to prepare for what may lay ahead.
Informed consent? Are current warnings enough?
"Learn a more complete story of you. More than 10 million people have uncovered something about themselves. You will too." This is one of the value propositions that AncestryDNA lists on its homepage.
Though DNA testing companies boast of happy reunions and welcome discoveries, not all stories have positive endings. The news of a secret sibling, parent, or child could be devastating and have long term mental health effects.
According to psychotherapist Amber Weiss, "When a patient finds out life altering information such as a new family member, this may lead the individual to experience emotional distress." She explained that patients will go through a transitional process. Weiss said, "The individual must cope with the unexpected information and find a new normal in adjusting to the newfound changes."
In 2014, a reproductive biologist discovered a half sibling that was kept secret. He shared his story in an anonymous letter on Vox, which led to intense scrutiny of DNA testing company 23andMe's lack of transparency about the possibility of receiving unwelcome connections.
After this backlash, 23andMe changed its policies. They now require users to opt-in to the feature that allows them to find close relatives. Customers have to accept the box acknowledging that finding close relatives that they did not know about could be welcome news, or it could reveal surprising or uncomfortable information.
Founder of the company, Anne Wojcicki, explained the policy change in a blog post to the website.
"The Close Relatives features can potentially give a customer life changing information, like the existence of an unknown sibling or the knowledge that a relative is not biologically related to them," Wojcicki wrote. "Customers need to make their own deliberate and informed decision if they want this information. It is 23andMe's responsibility to make sure our customers have a choice and that they understand the potential implications."
Though 23andMe has an opt-in protocol requiring its users to re-affirm their desire to participate, not all DNA testing sites follow the same protocol.
In Warner's case, he says he received no prior warning of the possibility of surprising outcomes on AncestryDNA. "The results just popped right up. There was no warning that I could find out information like this."
Experts say: emotional support should be recommended
A fertility regulator in the United Kingdom, the Human Fertility and Embryology Authority (Hfea), is leading the efforts calling for DNA testing websites to do more to inform customers about the risks of getting unwelcome results and provide information on where to access resources if a customer receives unwelcome news.
The Hfea stated, "We found no DNA testing and matching services that mention that a need for professional emotional support may arise from relatedness matching, or via further inference from matching." They continued, "No service offers professional emotional support to users, nor signposts to other available support."
The American Psychological Association released a paper discussing how the discovery of family secrets through genetic testing often leads to the need for emotional support.
The paper states, "One of the biggest benefits of at-home DNA testing—its speed and ease—can also cause emotional whiplash." It goes on to say, "While psychologists don't necessarily suggest that everyone considering sending away for a 23andMe kit see a counselor first, they do recommend taking time to think about the potential fallout."
Clinical genetic counselor Brianne Kirkpatrick explained that people don't realize that they might need support after DNA testing because of the lack of awareness that they could find out about a half-sibling or that their father is not their father.
Kirkpatrick said, "No customer thinks it could happen to them. Until it happens to someone, it never dawns on them that they could be one of those stories." She went on to say, "There needs to be acknowledgement that these surprises are more common than the public believes." One way to do this, she argues, is by the companies alerting their customers of the warnings and providing resources to find professional help when needed.
Where to turn for support
Customers who need support do not always know where to turn, and in some cases, cannot gain access to professional services for a variety of reasons.
Currently, there are certified genetic counselors in the United States to help users comprehend DNA results and provide emotional support. However, according to Sheila O'Neal, the Executive Director of the American Board of Genetic Counseling (ABGC), there is a shortage of genetic counselors in the United States to keep up with the growing demand of patients needing their services. Many of these patients stem from the at-home DNA services rather than physicians.
According to O'Neal, in the last few years, the profession has been expanding at a rapid pace and additional programs have been accredited in order to meet the increasing need for genetic counseling services.
O'Neal also explained that patients could have problems getting these services covered by insurance. When individuals request DNA testing through a doctor's office, they are required to see a genetic counselor throughout the process and the services are typically covered by insurance companies. However, when customers use third-party companies like AncestryDNA or 23andMe, they are not made aware that they might want to see a counselor, and even if they do want professional counseling, the services are not always covered by insurance.
Online Communities Form
While access to professional resources might pose problems, there is an abundance of public community resources that customers can access for support. Closed Facebook groups offer outlets to connect with others going through similar experiences. Some of those groups include DNA NPE (non-paternal event) Friends and DNA Detectives. While free to join, these groups have brief forms to fill out prior to entry to screen potential members to ensure they meet criteria.
Richard Hill, author of Finding Family: My Search for Roots and the Secrets in My DNA, created a public Facebook group called DNA Success Stories for people to share their experiences. He also started an independent consulting service called DNA Testing Advisor to provide support to those navigating life post-DNA discovery.
His clients all have different stories. "I hear from lots of people that are just starting their search. These include genealogists, adoptees, donor conceived individuals and people who discover as adults that the man who raised them was not their father," Hill said. "Even when you're not looking for it, an unexpected close relative may appear among your genetic matches."
Though there are often DNA discoveries that are unwelcome, Hill explains that what keeps him going is hearing from people who successfully reunited with lost family.
In John Warner's case, he discovered a half-brother that he never knew existed, but he intends to make up for lost time.