Brianne Kirkpatrick is a licensed and certified genetic counselor in the United States. In 2016, she started Watershed DNA as a solo private practice to serve clients with questions about direct-to-consumer (DTC) DNA tests. Since then, Watershed DNA has expanded into a full-spectrum source of information and support for people with unexpected DNA results. In this interview, she portrays the dilemmas and emotional turmoil that DNA testing can trigger in people’s lives, and gives practical advice about how to better prepare yourself for unanticipated findings.
Please describe your work, what sparked the idea, and how has it evolved so far?
People typically approach me with issues that at their core are questions about personal identity – How do I fit this new and sometimes unexpected information into my understanding of who I am, who my family is? Whether the question focuses on a medical discovery they are trying to better understand or an unexpected ethnicity or family revelation, they are looking for someone who can help them understand what it all means. They want to know why they feel the way they do about their DNA results and whether their questions and worries are normal or not.
Clients have the option to work with me 1:1, to be part of small and large digital support groups, attend workshops, participate in discussions in a members-only private forum, download E-books on specialized topics, and learn from podcasts and other media.
There are no other genetic counselors that specialize in this area of ancestry and direct-to-consumer tests in the way that I do.
I became specialized in this area because of a personal interest in my family history and a desire to explore branches of the tree we did not know about because of an adoption in a past generation of the family. My research brought me into contact with other genealogists who began to approach me with situations they did not feel prepared to handle but thought a genetic counselor might.
DNA tests can reveal many types of discoveries, for example, people discover that the father who raised them is not their biological father. Some learn that they are carriers of a rare recessive variant and at the same time find out the ethnicity they have always identified with is not represented in their DNA results. It can be confusing and destabilizing. Some individuals who make this discovery find themselves in complete emotional turmoil.
When I first started doing this work, there were no easy-to-find support resources or groups to send people to. There weren’t counselors or therapists who understood the NPE (Not Parent Expected) experience and the issues of identity that come along with discovering you’re not genetically who you always thought you were. So I began to create resources for my own clients and build connections with other support groups, until finally I combined all of that and made it accessible on my website.
Writing is a huge part of the work I do, some through the Watershed DNA blog and some through books and E-books.
The DNA Guide for Adoptees was co-authored with a friend of mine who is a genealogist. We were able to address a lot of the common questions and issues that arise when adoptees use DNA testing, whether it’s for family search purposes, understanding their identity, or looking for medical information.
Next in line is a book on the unexpected DNA discovery topic which I plan to publish in the near future.
I recently started a podcast called DNA Clarity and Support, as a way to reach a wider audience of people who are having the same challenges and issues as I did. I help those with DNA discoveries understand that they are not alone in their struggle. I also help professionals understand the needs of clients who seek their advice. Raising awareness of support organizations, websites, podcasts, and books is a central goal of DNA Clarity and Support.
Here’s a quick view of the Watershed DNA web platform
Can you give an example?
I’ll use an example of someone who had a surprise discovery that impacted both medical risks and their family connections. After taking an innocent test on 23andMe, not suspecting to get anything unusual, a client learned that she was 50% Ashkenazi Jewish, which she had not been aware of. She also found out that she is a carrier of a genetic variant in BRCA1, increasing her risk for breast cancer and ovarian cancer. She reached out to me soon after the discovery, not knowing what to do and whether to believe the information which was completely unexpected.
A common step in the process of discovery is going through a period of doubt, questioning, and shock. It’s important that at that point in time, a person has easy access to support and information because these discoveries are rarely anticipated. It just turns people’s lives upside-down.
Since this was a DTC test with medical significance, I recommended a specialized genetic counselor (in her case, a cancer-specialist) who could go through the results, offer repeat or confirmation testing, and help her understand the cancer screening and prevention options.
Of course, the first step is always to make sure that there wasn’t a mistake, a sample swap, a misinterpretation, or some other type of human error at play. Once the accuracy question is resolved, I help move people to the next stage, which is figuring out who to talk to about it and what kind of support they need.
Counseling and therapy can be incredibly valuable, but not everyone knows how to navigate their way there. Some need help overcoming the stigma they might feel over needing to work with someone like a counselor.
Much of what I do is identify where people are in their stage of the discovery, help support them at that point, and then help figure out what they need next.
Would there be further investigation to find the person’s blood relatives?
In the case I described before, there were two aspects to that clients’ discovery to consider: one was identifying what to do about the increased risk for breast and ovarian cancer and the other was determining what to do about the NPE discovery.
In terms of figuring out the connection to the biological family, we went over her results together remotely and we looked through her family matches. By asking some probing questions, I was able to help her identify which of her matches were from her mother’s side of the family, and which ones were from her paternal side, the father whose identity was still unknown.
We also looked at information about the last names of her matches and we spent the most time on her closest match in terms of how much DNA they were sharing. It is a lot to process, so we stopped and talked about making a plan and taking time to adjust before making decisions about reaching out to potential biological family members.
Not everyone is immediately ready to start a search upon learning they have misattributed parentage. It’s a process to get there. There are many scenarios to think through ahead of time about the way things might play out, so it’s important to slow down and work through the emotional impact first.
In your opinion, how has genetic testing changed genealogy and family research?
DNA testing has given us the ability to know the genetic connection between individuals. Before DNA testing, genealogy and family research was based on documentation — paper records and verbal reports of who was related to whom.
Family secrets and adoptions have always been a part of human history. DNA testing is changing the way discoveries are revealed. The paradigm has shifted from mothers/parents and those involved in the relinquishment of children being aware into the individual person being able to do their own research and discover who they are related to.
DNA testing is rewriting family histories, genealogies, and family trees that have been set in stone for so many years. With this added piece of DNA testing, that family tree is no longer the same.
That being said, there’s still a lot we don’t know about DNA.
Yes, that is true both for the medical and ancestry aspects. There are about 5,000 genes that we know exist but haven’t been researched or fully-researched. So from the medical aspects of DNA, we are still learning something new every day.
From the aspect of understanding human history and whether we can define people based on ethnicity, that is still developing as well. Understandably, I receive a lot of questions surrounding the accuracy and breakdown of ancestry test reports, because the ethnicity percentages change over time. That is because each of the testing companies compares your DNA to their own set of reference data, which is a combination of company-specific and publicly-shared datasets.
You should expect to see differences from one company to the next, and changes in your reports over time, as the databases are constantly being updated. Essentially, population genetics is still an inexact, interpretation-based science.
What would you advise laypeople who are curious to learn about their DNA?
Before going into testing, try to do as much learning about what your results might look like when they come back to prepare yourself ahead of time. Watch videos, read books, explore the test providers website and look through their websites. The more you know what you’re going into, the better prepared you will be.
If you find yourself with unexpected results, slow down and don’t jump to conclusions too quickly. There are genetic counselors, genetic genealogists, and people like myself who can review the results and make sure you are not misinterpreting what you see.
Know that struggling with unexpected results is normal, and there are support groups, counselors, therapists, and support information available for you. Organizations around the topic of DNA discoveries have been growing rapidly in the past few years. Don’t struggle with it alone. It’s absolutely unnecessary in this day and age!