This year I turn 48, the age my father was when he died of pancreatic cancer. So I had a genetic test. I wanted to know if there was a reason to worry I might get—or have—cancer. I already know I have risk factors: an immediate family member who died before the age of 50, and I have Ashkenazi Jewish heritage on both sides.

A desire to foresee my fate, to know my destiny, opened a Pandora’s box. In order to get a genetic test, I was required to receive counseling first, to understand how genes work, what risk factors I may have, to decide whether I really want to know if something deleterious is waiting for me.

In our session, the counselor talked me through genes and inheritance. On a piece of paper, she drew a genogram, a family tree with symbols depicting gender and relationships, known cancers, and deaths.

“In anthropology, we call that a kinship chart,” I told her. As an anthropologist, I was familiar with these models. Kinship diagrams show relationships. For anthropologists who go to live in foreign cultures, it’s a tool to reduce confusion between common names in the community of study. It’s a way to map a community, as relationships between people impart more meaning and contextual information than does an individual.

My genogram only had ten symbols on it. Ten known family members, five of whom were deceased. The genetic counselor wrote the words “limited info” on the paper depicting my family. “That was quick,” she said. “You don’t have a lot to go over because you don’t have a lot of family.”

A 2019 PEW Research Center survey found that 27% of home DNA test users discover unknown close relatives, meaning a person could accidentally learn they are not biologically linked to those to whom they thought they were related. DNA tests can have devastating emotional consequences when people learn they have no genetic connection to their kin.

But I was in the inverse situation: my genetic test results impacted biological relatives to whom I had no actual connection.

My father had estranged himself from his family of origin when he was in his early thirties. He cut off all contact with his mother and two younger brothers by the time I was eight. (His father had died by then, due to heart-related issues, as far as I know.) I don’t know why he did it, but as an adult reflecting back, I think disconnecting was what my father felt he had to do to survive.

Forty years later and 26 years after my father’s death, I had the test and learned one copy of my ATM gene has a pathogenic mutation, an alteration with sufficient evidence to be classified as capable of causing disease.

The abbreviation ATM stands for “ataxia-telangiectasia mutated.” The ATM gene is located on chromosome 11. It helps control cell growth and repair and replace damaged DNA. Research suggests that people who carry one mutated copy of the ATM gene may have an increased risk of developing several types of cancer. Those who carry ATM mutations experience more frequent cancers of the breast, stomach, bladder, pancreas, lung, and ovaries than do others, but studies are neither definitive nor conclusive. Research is ongoing, and guidelines and testing protocols are updated every year as new information is learned. The gene wasn’t even discovered until 1994, the same year my father died.

There is justification for worry. In 2020, pancreatic cancer was the third leading cause of cancer deaths in the US—surpassing breast cancer—and is on the rise. Pancreatic cancer has a very low survival rate. Symptoms are generally not detectable in early stages; by the time it’s found, it’s usually so advanced that treatment and surgery have little benefit. Some research shows chemotherapy may extend life only by days or weeks, and the quality of that extra time is not good. The median survival rate is three to six months.

It’s a short distance from pancreatic cancer diagnosis to death. Recently we mourned the losses of “Jeopardy” host Alex Trebek, civil rights legend John Lewis, Supreme Court Justice Ruth Bader Ginsburg, and, not that long ago, actor Patrick Swayze, to pancreatic cancer.

My father lived 16 months past his diagnosis. He endured surgeries, radiation, and chemotherapy and suffered their ravages. I saw him lose his ability to walk, see, eat, speak. He exceeded expectations, but it was a long, slow slide to the inevitable, and we had that much more time to watch him suffer with helpless dread. I was with him as he died. The grief from that loss is still with me today.

I assumed, as did my genetic counselor, that my mutation was inherited, not caused by something in the environment, even though only 3% to 10% of diagnosed cancers are heritable.

The only way to know for sure would be to fill in my genogram, my kinship chart, with more information from living family members: my father’s brothers—my uncles, who were, in effect, strangers.

Genetic testing for pathogenic mutations in family members can be helpful in identifying at-risk individuals. What was my obligation to my biological relatives? If not to my father’s estranged brothers, what about their adult daughters? There’s a 50% chance they inherited a mutated gene that increases their risk for cancers, and if they have it, their children have a 50% chance of inheriting the mutation as well.

These women are strangers. I never met them. I don’t know if they know I exist or if they knew they had an uncle who died. But the genetic information is important; I would want to know if there was something in the biology of a stranger that affected me.

I searched for my cousins’ addresses on the Internet so the genetic counselor could send a letter: “A member of your family has been identified as having a mutation in the ATM gene….”

I asked the genetic counselor to include my contact information and how we are related in the letter so my cousins could reach out to me if they wanted. She informed me it’s against policy.

Robert Kolker, author of “Hidden Valley Road,” suggests genetic ties are but one aspect of how we connect to others: “We are more than just our genes; we are in some way a product of the people who surround us, the people we’re forced to grow up with and the people we choose to be with later. Our relationships can destroy us, but they can change us too and restore us, and without us ever seeing it happen, they define us. We are human because the people around us make us human.”

I wanted to do a good thing, the right thing. But maybe I can’t make a familial connection out of a biological one.Amy Goldmacher is an anthropologist, book coach, and author in Michigan. Visit her website and find her on Twitter and Instagram @solidgoldmacher.BEFORE YOU GO…

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Recognizing the challenges facing individuals who experience DNA surprises, Adoption Network Cleveland (ANC) has launched the DNA Discoveries Peer Support Group, a virtual peer support program focused on the emotional impacts of the journey. It kicks off with a special panel on February 2 facilitated by ANC’s search specialist, Traci Onders, that will feature an individual who’s discovered misattributed parentage, a donor-conceived person, and adoptees who have found birth family. Onders spoke with us about the program and the personal journey that led her to working with ANC.

How did you come to Adoption Network Cleveland and how did you become interested in this work?

I started as program coordinator for adult adoptees and birthparents in 2016. I’d begun volunteering at Adoption Network Cleveland (ANC) prior to that because its mission was personally important to me. Adoption Network Cleveland advocated for adoptee access to records in Ohio for more than 25 years, and finally in 2013 Ohio passed legislation that opened up original birth certificates to adult adoptees. It’s hard to imagine this would have happened without the steadfast determination of ANC, and as an adoptee, I wanted to give back to the organization that made it possible for me to request and receive my original birth certificate. ANC is a nonprofit organization and has a reputation for advocacy rooted in understanding, support, and education—a meaningful mission to me.

I was born to a woman who had been sent to a home for unwed mothers to hide the shame of pregnancy from the small town in which her family lived. There was no counseling available for the grief of relinquishing a child, and she was told to go on with her life and forget about it. These homes no longer exist; we know now how awful and hurtful this practice, rooted in shame, is.

My birthfather died a year later in a tragic accident. He was also an adoptee, raised as a son by his maternal grandparents. I will never know if he knew who his father was, but thanks to DNA, I do.

I first searched for my birthmother more than 20 years ago after my children were born. Pregnancy and childbirth made me want to know more about the woman who carried me and gave me a deep understanding that she made decisions that had to be extremely difficult and painful in a way that I had not previously appreciated. I had complicated pregnancies and no medical history for myself or my children. As a mother, I felt compelled to know and understand more about both my history and my beginning. At that time, I discovered that the agency that handled my adoption, Ohio Children’s Society, had destroyed its records. I had no information at all to work with, and my search hit a brick wall. It was important to me that I connect with my birthmother in a way that was respectful. I didn’t know if she had told anyone she’d relinquished me, and I was concerned that if I hired a private investigator, the PI might use tactics that I wasn’t comfortable with or make a possible secret known to others, and that this somehow might hurt my birthmother or her family. Until I could request my original birth certificate in 2015, I didn’t have many options. In 2015, adoptees were finally able to access their original birth certificates in Ohio, and when I did this, it named my birthmother. I also discovered that I have a maternal half-sister. My birthmother and I reunited very shortly after that. I was finally able to learn her story and to gain a more complete and ongoing medical history. Knowing these things and my relationship with her have been blessings in my life that for many years I did not imagine would be possible. A few months later I met the extended family, and their warm welcome touched my heart.

My search for my birthfather led me to test my DNA at Ancestry and 23andMe. I‘d been told who he was, but since he died very young, I did not have the opportunity to connect with him or understand his story. Using DNA, I was able to confirm what I’d been told, which allowed resolution that I might not have been able to find in such ambiguous circumstances. He was a kinship adoptee, and I was able to determine his parentage.

I learned that although he died when he was twenty-three years old, he’d had three children with 3 different women—that I have two paternal half-brothers, both born to different woman. The first died as an infant. The second brother took a DNA test to learn his ethnicity. He discovered misattributed parentage—that the man who raised him and is on his birth certificate is not his biological father and that I am his paternal half-sister. We don’t know if his father knows, or even if his mother knows for sure. He doesn’t want to discuss this with them, and that’s his decision.

At ANC, we use DNA to help adoptees solve for unknown parentage, and my own search made me acutely aware of how much in recent years DNA was tearing down brick walls and helping connect people who might otherwise never find each other. It also made me particularly sensitive to the fact that some of these discoveries can be quite earth-shifting for people.

As my work in this area grew, I was promoted to search specialist to greater focus on assisting those in search, utilizing both traditional methods and DNA. ANC provides support and guidance throughout the journey of search—before, during and after—and has for more than 30 years. I came to appreciate how many people outside the adoption community were also  touched by DNA discoveries.

My own personal history of search and reunion give me an important connection with the people I work with because I can truly understand how these questions can consume one’s thoughts and time. I can relate to the frustrations, the joys, the sadness, the loss, the quest for knowledge when one doesn’t know their “chapter one,” the feeling of having to write “medical history unknown—adopted” every time one fills out medical forms or sees a new healthcare provider. Having reunited with my birthmother, I know the roller coaster of emotions that reunions can bring. I have a deep respect and understanding of the birthparent’s experience because of my work with many birth families and also my connections to my birth family.

Through my own journey, I have come to realize many things about adoption. It’s a lifelong journey, and not a one-time transaction. My work helping others separated by adoption to find each other—whether it is adoptees searching for birth family, birth family searching for adoptees, or more recently people that have DNA surprise discoveries—has revealed many complexities and similarities. When we shine a light on these discoveries, we find the impacts of secrets, shame, infertility, racism, money, power, privilege, mental health, abuse, neglect, domestic violence, trauma, addiction, grief, loss, religion, social class—to name a few. For me, it’s important to advocate for progressive practices and reform in adoption and child welfare.

The DNA Discovery Peer Support February 2 panel discussion is a joint endeavor by Adoption Network Cleveland and Adoption Knowledge Affiliates. Can you describe the nature of the collaboration?

Adoption Network Cleveland founded in 1988 and Adoption Knowledge Affiliates founded in 1991 have a lot in common. Both organizations were founded by adoptees with a vision to bring together adoptees, birthparents, adoptive parents, and professionals in an effort to increase knowledge, service, and understanding. Both have been impactful organizations over the years. With the pandemic and our world going virtual, ANC and AKA partnered to host a joint virtual conference in October 2020, combining conferences each organization had planned and been forced to cancel in the spring.

At ANC, we had been discussing how to better meet the needs of people who were coming to us with DNA discoveries—not only adoptees but those with misattributed parentage, individuals who are donor conceived, and others. Adoption Knowledge Affiliates started its DNA Discovery Peer Support Group in Sept. 2020, and ANC planned to start one in 2021. Adoption Network Cleveland and AKA are collaborating for the panel discussion on Feb. 2, and from there each will individually hold its own DNA Discovery Peer Support groups. People who might find more than one meeting a month helpful might like to have options.

How was ANC’s DNA Discoveries Peer Support group developed and conceived and why it was felt to be necessary?

At this point the majority of searches we assist with have a DNA component. In addition, we’d like to increase engagement of people with DNA discoveries beyond adoption-based situations. We have expertise in this area and would like to be a resource in a broad variety of situations. People are finding biological family or are being found; and they’re finding new information about their core identity, such as ethnicity, birth order, unexpected relatives, and more. There can be a wide range of reactions by those being found and those searching.

Many of the issues that folks are working through with a DNA discovery are the very same core issues experienced by the adoption community, such as loss, rejection, guilt and shame, grief, identity, intimacy, and control.

We felt uniquely positioned to offer support and guidance in a manner similar to what we have been doing through our General Discussion Meetings, which are open to anyone touched by adoption and/or foster care. Adoption Network Cleveland started holding these meetings more than 30 years ago, so we bring deep knowledge and the meetings evolve to meet current needs. More information about those meetings can be found here.

Adoptees who are using DNA to make these discoveries are excited to find new information and new relatives. It can be important to remember that we don’t know what this discovery might mean for the person on the other side, such as in the case of misattributed parentage for example, where someone might be learning that the man that raised them isn’t their biological father.

We wanted to create a safe place for people to speak about the emotional impact of these discoveries, in a confidential environment with people who have walked a similar journey and truly understand.

Are the groups being held via Zoom? Are they virtual as a consequence of COVID-19 or will they remain open to people from any location when virus restrictions lift?

We will be using Google Meet, which is a lot like Zoom. The DNA Discovery Peer Support Group and our General Discussion Meetings are free, but advance registration is required so that one can receive the link for the meeting. The meetings are the second Tuesday each month, 8-10 PM Eastern Time. Registration can be found on our calendar. We plan to assess and see once it’s off the ground if the meetings will remain structured virtually. Personally, I see this continuing as a virtual group if there is a demand.

How do you envision how these groups will go? Will each group meeting be facilitated? By you? What’s the goal and desired outcome?

Our group will be focusing on the emotional impact of DNA discoveries. This is something that all discoveries have in common, and this will be a place where people can really connect and provide understanding, another perspective, and support. Our DNA Discovery Peer Support Group and our General Discussion Meetings are facilitated by experienced volunteers who are supported and overseen by our staff. I will be assisting with the DNA Discovery Peer Support Group as needed, and, as a search specialist, I am available for individualized guidance, one-on-one search assistance, and support. The experienced volunteer facilitation team members chosen for the DNA Discovery group are both adoptees with their own personal DNA discoveries. The group they lead is shifting from being one of ANC’s six monthly General Discussion Meetings to meet this specific need.

Our goal with the DNA Discovery Peer Support Group is to provide a safe and supportive environment where people feel open to discuss a major life event—finding out new information about themselves and their identities. One does not need a connection to adoption to attend these meetings. We will be focused on supporting people throughout their journey and helping them to connect with others who truly understand how earth-shifting this can feel, how others have worked through their own discoveries, and the accompanying emotions. We understand these types of discoveries are not a one-time event, they are lifelong journeys. Connecting with others who have walked a similar path can help to normalize what can be an overwhelming experience.

What do you believe are the most significant issues, the most pressing concerns, for which people need support after a DNA Discovery?

Every situation is individual and unique, so it’s hard to generalize. However, the core issues that arise are very much the same that we know from adoption and permanency: loss, rejection, guilt and shame, grief, identity, intimacy, and control.

DNA testing has the power to unravel decades old secrets and can make individuals question their ideas of family, or religion, or even morality. I am a firm believer that everyone has a right to know their genetic heritage, but that does not mean anyone has a right to a relationship, as that is something for both parties to determine. Many people who take a DNA test do not think they will receive a result that might include a surprise such as a different ethnicity, or a new sibling, a different parent, an unknown child, a niece or cousin. Discoveries can also include learning one is adopted (late-discovery adoptees) or donor conceived. These can be a very powerful experiences and can upend long held beliefs.

In what ways do you believe peer support makes a difference? How does it help?

Connecting with others who have been there and understand can be normalizing and healing.

We have followed a peer support model for our General Discussion Meetings for more than 30 years with great success. We’ve welcomed those with DNA discoveries to these meetings as technology has evolved. It can be extremely valuable to hear the perspectives of other individuals who have walked a similar journey and truly understand. I’ve seen people make wonderful connections with each other and learn insights that might not have happened anywhere else. Peer support offers a place to work through some of the core issues such as loss, rejection, grief, identity, shame and guilt. Hearing how other’s work through their journeys provides a variety of options as we consider connecting with relatives and offers a chance to see how people have gained a sense of control over the experience of discovery, and not have it control them. Peer support also offers an opportunity for people who are farther along in their journey to give back.

What limitations are there, if any, to peer support? 

Peer support is not meant to take the place of therapy, and individual therapy can be a very powerful and healing experience. Accessibility can be a limitation for some.

In addition to the peer support group, ANC also offers a Monday evening speakers group. Can you tell us more about that?

Adoption Network Cleveland is a leader in bringing the adoption community together to create a network of support and advocacy. In this critical and uncertain time for all of us, we are pleased to offer a Monday Evening Speaker Series full of topics that are of interest to a broad audience impacted by adoption, kinship, and foster care. More information and recordings of past presentations can be found here.

Learn more about the DNA Discovery Peer Support special February 2 panel and the ongoing group here. And for information about other programs and events, click here.

Look for Adoption Network Cleveland on Facebook and Instagram and Twitter @adoptionnetcle. Look for Adoption Knowledge Affiliates on Facebook and onInstagram @aadoptionknowledgeaffiliates.Traci Onders is a search specialist at Adoption Network Cleveland (ANC). An adoptee herself, she’s facilitating ANC’s new DNA Discovery Peer Support Group special panel on February 2. 

By Aimee Rose-HaynesDirect-to-consumer DNA testing via Ancestry, 23andMe, and other companies has rapidly replaced the arduous tasks of hands-on library research, grave searching, and contacting strangers for the purposes of finding long-lost relatives—a tremendous advance since just a decade ago, when locating biological family or records to validate family lineage was a near impossible feat.

While these tests—which rely on saliva samples—are simple, quick, and affordable, interpreting the results is often a confusing and time-intensive process.

An International Case

In November 2019, I took on a special challenge that illustrated the tenacity needed to solve cases. The case involved a search for records from Panama and Columbia to help determine the client’s origins. Bob called on DNAngels to help him find his mother’s biological father. Ann, his mother, was born in New York in 1961 and raised by an Italian-American mother and stepfather. Her mother refused to tell her who her biological father was and took his name to the grave. Ann thought that was it—that she’d never know her paternal family—and gave up on the thought of trying to find him.

Bob, wanting to help his mother in any way possible, ordered Ancestry DNA tests for her, himself, his sister, and a few other relatives. Once he received the kits, he mailed them back immediately in hopes of finding the man Ann had spent decades wondering about and answering her questions. Was he tall? Was he a nice man? Where was he raised? What were his parents like? What did he look like?

Bob found the results that arrived a few weeks later both exciting and confusing. Ann’s ethnicity report had significant amounts of Spanish, Panamanian, and Columbian heritage. This gave them their first clue about where her biological father could be from. For Bob, looking at the numbers and trying to figure what it all meant was like trying to read a foreign language. He needed help.

The Search
Bob contacted DNAngels in the autumn of 2019 for help solving his mother’s DNA parentage puzzle. I requested access to his family tree and his mother’s DNA and went to work. I started by sorting his matches and separating Ann’s maternal and paternal lines. This was very easy to do since Bob had gotten tests for so many people in the family.

I looked at Ann’s matches and anticipated that the matching process would be difficult. Ann had six matches in the range of 108 centimorgans (cM) to 184 cM. A cM is a unit of measurement representing the length of DNA shared by two DNA matches. Testing companies use an approximate range of roughly 8 cM to  3,700 cM to determine relationships. The higher the cM, the more closely one is related to a match, with 3,700 indicating a parent/child relationship. I began by looking at the trees of all of Ann’s matches to try to isolate a most recent common ancestor (MRCA). Unable to get very far, I updated Bob, with whom I was in daily contact at this point in the process.

Bob informed me that some additional family members had also taken a 23andMe DNA test, and with their login information in hand, I hoped to locate a missing puzzle piece. I had handwritten charts, sticky notes, and highlighted names all over the living room table and floor for nearly two months for this case!

I was able to build a tree based on Ann’s 186 cM match and discovered that Ann’s great grandparents and second great grandparents were the same couple. This indicated that Ann’s 186 cM match was inflated due to endogamy—the custom of marrying only within the limits of a local community, clan, or tribe. So that became another puzzle to work through. Complicating things still further was that two matches on 23andMe were uninterested in helping.

Nonetheless, I persisted, finally finding an MRCA and building the family tree, which included 9 children. I then began linking Ann’s DNA matches to the familial lines that were slowly coming together and soon was able to eliminate three lines, leaving five lines left to trace.

I began researching, reading through US, Columbian, and Panamanian newspaper clippings—obituaries and public records including port arrivals and departures—as well as social media, searching for anything that might help expand this family tree. Bob was also relentless in helping to track and contact anyone in these family lines.

I never imagined I would ever use what I’d learned in Mr. Flores’ high school Spanish class; if I had, I’d have paid more attention back then. Bob sent me messages and voice recordings from potential family members, most of which were in Spanish. Using Google Translate much more than I’d like to admit, I learned a few important things necessary to solve this case.

Bob had discovered that the MRCAs had taken in and adopted two sons. A week later, I discovered that another son had never left Panama. This narrowed the search from five family lines to two and the details finally started to come together.

Now left with two brothers as potential candidates for Ann’s grandfather, Bob and I were excited as we got closer to solving the case. By this point, I’d worked on this daily for about 10 weeks and refused to give up. I continued digging even deeper into these two men, John and William, trying to place either man from Columbia in New York, where he might have met Ann’s grandmother.

William was born in Columbia, and I located a record of him having lived in New York. He actually married someone who was related to Ann’s maternal line. This union proved he had been in the same area as Ann around the time she was born. William had 2 daughters and a special needs son who was eliminated as a suspected biological father. Bob, who had been in contact with one of William’s daughters at this time, had William’s granddaughter tested, which revealed that she shared 236 cM with Ann. This excluded William, because if he’d been Ann’s paternal grandfather, his granddaughter would be expected to match Ann at a half niece relationship (Ann and the granddaughter’s mother would be half-sisters), or about 600 cM to 1,300 cM.

John, the other potential grandfather to Ann, was a soldier in the U.S. Army who was killed in action in Korea. I found a port arrival record showing he came to New York in 1928. I also found a record indicating he married in New York a year later. He would go on to have daughters as well as three sons—Manny, Greg, and Jake.

Manny died in infancy, and Greg couldn’t be located, so Jake was the only possible relative to search for. If Jake were still living, he’d have been roughly 90 years old. Fortunately, one of the cousins Bob had contacted knew that Jake was still living and was in New York. That cousin helped Bob get in touch with Sam, one of Jake’s sons, who was shocked when Bob told him DNAngels had discovered his father might have been Ann’s biological father. He was intrigued and willing to help. Bob sent him a DNA test in late January 2020 to confirm the suspicion.

While Bob waited on pins and needles for Sam’s test to come back, I stayed busy and continued to research and build the family tree. Sam’s test came back on March 6, 2020, revealing that Ann and Sam matched at 1,455 cM, confirming a half sibling relationship. Jake was her biological father. Bob sent a DNA test to Jake, the results of which showed a 3,299 cM—an amount signifying a parent-child relationship. I’d solved Ann’s case after nearly five months.

Ann went from knowing nothing about her paternal line to not only knowing her father’s name but also being able to meet him. She now has 9 half-siblings as well as several aunts, uncles, and cousins. Jake’s family has welcomed her and her family into their lives with open hearts.

Never give up!If you have a question you’d like to see answered in a future column, send it to bkjax@icloud.com.Aimee Rose-Haynes is a lead genetic genealogist for DNAngels and a member of the International Society of Genetic Genealogy and the National Genealogical Society. She has 20 years of traditional genealogy and 6 years of genetic genealogy experience.

Stephanie Leslie and Margaret Renner also contributed to this article.DNAngels, an organization dedicated to DNA results interpretation and more, was founded by Laura Leslie-Olmsted in February 2019 with the goal of helping not parent expected (NPE), adopted, and donor-conceived clients find their biological families. Seven months after being founded, it became a 501(c)(3) nonprofit organization. In 2019, the team solved approximately 550 cases; in 2020, it solved 697 cases, and it expects to continue to increase those numbers in 2021. DNAngels has a 92% case solve rate, which means the majority of its clients find the answers to their parentage mysteries. In 2021, it is dedicating every month to a specific theme. The theme for January is “Never Give Up” to highlight DNAngels’ dedication to finding answers for the 8% unsolved or “on hold” cases. Learn more about DNAngels at its website, and find it on Twitter @Dnangels4 and on Instagram @Dnangelsorg.

Libby Copeland is an award-winning journalist, former Washington Post staff author and editor, and author of The Lost Family: How DNA Testing is Upending Who We Are, published in March 2020 by Abrams Press.How long did you spend researching and writing The Lost Family?

Altogether, about three years. I first wrote about Alice Collins Plebuch’s fascinating genetic detective story in The Washington Post in early 2017. The response to that story, which was hundreds of emails from other consumers sharing intimate and moving DNA testing stories, convinced me the topic needed to be a book, and I started researching for the proposal soon afterward. But the bulk of the work was done during 2018 and 2019. In The Lost Family, I revisit Alice’s story and tell it much more fully. I was able to travel to Washington State and spend time with her, as well as do historical research going back a hundred years to illuminate her family’s astonishing story. And as I follow her story, I also tell many other tales from people I Interviewed—wrenching, moving stories of how this technology is changing how we see ourselves and how we talk to one another, not to mention how we think about truth and the past.

What so intrigued you initially that you were willing to devote so much time and attention to this issue? Did you realize early on how complex the subject would be?

I was really intrigued by the idea that questions about genetic origins and family could lead individuals, families, and the culture at large to deep explorations of essential human questions about identity, what makes a family, and how we define ethnicity. The science was indeed quite complex, and so were the experiences of people affected by this technology. I got to interview a lot of genetic genealogists about their techniques and the history of the field, and to tour a DNA testing lab and speak with a number of scientists and historians about human genetics and autosomal DNA testing. But really, it was the deeply human stories that moved me most. The emails from readers and the stories I heard from other people I interviewed sometimes moved me to tears. There were stories of adoptees searching for family, of donor-conceived individuals defining and building relationships with half-siblings and donor fathers, of people discovering NPEs and struggling to incorporate that news with everything they’d known before. I was really interested in the idea that this technology was touching the most intimate parts of people’s lives and changing them forever. I was intrigued, too, by the idea that the past is not really over. It’s still very present in people’s lives, and DNA testing—and all that it can uncover—is prompting people to reassess what they thought they knew about things that happened 50, 60, 70 years ago.

Of all the seekers you spoke with, what story touched you most?

There are so many stories! It’s hard to pick one. There’s a very moving story in the book about a foundling who was left on a doorstep in the 1960s and adopted. Years later, she went looking for her biological family in order to know where she’d come from and to understand the context for having been given up. Her name is Jacqui. The genetic genealogist CeCe Moore helped Jacqui and suggested I interview her because she thought Jacqui’s story was so poignant and because she wanted people to see the range of ways that DNA testing stories can play out. Jacqui’s story is reflective of the fact that, as one mental health counselor put it to me, reunions aren’t always “happy” ones, even though those tend to be predominant in news stories.

Jacqui’s sisters on both sides have largely declined to have relationships with her; one set of sisters even decided they don’t believe that she’s their relative, despite clear evidence from DNA results. There are certainly happy reunion stories, and I write about a number of them in the book. But Jacqui’s story is equally important for people to read because she expresses her desire for connection with her siblings in a heartfelt, evocative, and relatable way. And yet, her truth is so threatening to her siblings that they decline and even deny the connection. There’s no easy solution to this kind of problem, and the complexity of it—and the way genetic relations who are essentially strangers can feel themselves to have hugely different interests from one another—illustrates how much we need to grapple with the legacy of what DNA testing is uncovering. I would argue there needs to be vastly better support for the millions of Americans trying to navigate these situations.

As you talk to people about DNA testing (consumers and potential consumers) what have you found to be most misunderstood?

I think if it hasn’t happened to you, it can be difficult to understand just how disorienting it is to discover that your own genetic origins are not what you long believed. From my interviews with people over months and sometimes years, I’ve come to understand that these revelations are not rapidly processed and incorporated into a person’s reality; indeed, the process of understanding a profound surprise go on for years, perhaps for a lifetime. A DNA surprise can pose questions about a consumer’s relationship with her parents, her understanding of her childhood, her sense of where she belongs, and her orientation on the world. These revelations can be traumatic, even if people are ultimately glad to know the truth about themselves. Those two things—experiencing pain as a result of a revelation yet not wishing to un-know it—might appear to be in conflict with one another, but they’re not.

On the other hand, the perspectives of those being sought out—I refer to them as “seekees”—are not told nearly as much, and are not as well understood. Those who don’t want contact with genetic kin and don’t want these revelations uncovered are much less likely to want to tell their stories. There can be happy reunions between parents and children or between siblings, but sometimes there’s a painful clash of interests. A seeker approaching her genetic father may be seen as threatening by that father, or by that father’s wife, or by the children he raised. There may be shame, guilt, and embarrassment on the part of the genetic father or mother. The decision not to have a relationship with a child or to even speak about having had a child may have been made fifty, sixty years ago, in far different and perhaps desperate circumstances. These are such sad and difficult situations for everyone. In a perfect world, there would be family mediators to help with those initial conversations, and mental health counselors to help everyone—those discovering family secrets, and the keepers of those family secrets. I am heartened to see a growing community of mental health professionals specializing in DNA surprises.

See our review of The Lost Family.BEFORE YOU GO…

Look on our home page for more articles about the search and reunion, NPEs, adoptees, and genetic genealogy.

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Tell us little about yourself apart from your adoption journey and your podcast/genetic genealogy work?

I am a wife and mother of two. I’m currently on my fifth career. I made my living as an actress/singer for most of my life. That slowed down in my forties, so, needing a creative outlet, I went to beauty school and got a cosmetology license. I’d always been a genealogy hobbyist, but the advent of direct-to-consumer DNA testing changed my world and heralded a whole new skill set.

And the impossible question: Can you summarize your own adoption journey? 

I always knew I was adopted and was always implicitly aware of the general mismatch between me and my adoptive family. To be clear, that doesn’t mean I didn’t love and appreciate them. It means I spent my life feeling like I was “other” than those around me, and it was emphasized by the general consensus that I should try harder to blend in and not be my own person. I found my biological mother in my early twenties and it was quite uneventful and stress free. My parents were supportive of this effort and even reached out to my biological mother in solidarity.

Years later, after having my own children, I realized I needed to complete my search and began an arduous and often shocking journey into identifying my paternal family. It became an obsession. As has always been my way, if those around me told me that something was impossible, I leaned in to prove otherwise. Being hypervigilant is a common thread among adoptees and it has pretty much dominated my motivations in life. (For the full story, please listen to the first 20 or so episodes of my podcast “CutOff Genes.” Caveat: Genetic genealogy is relatively new and always evolving, and the testing sites update their platforms regularly. That said, some of the earlier episodes may contain content that’s no longer relevant.)

Can you describe your services as a genetic genealogist?

I work mostly with adoptees, donor-conceived individuals, and NPEs (not parent expected). They must take a DNA test first, and I usually insist on Ancestry.com because of the size of its database and the superior tree building and research capabilities. If/when I identify who they are looking for, I will usually ask them to write a letter to said family member that I then send. I almost always ask the client to write a letter briefly summarizing their life and their reason for reaching out.

Because of my personal experience I feel that I add an extra level of insight and understanding for all parties involved in the adoption triad.

How did your own experience influence your desire to help people find their families?

My experience taught me that the treatment of adoptees is (mostly) cruel, archaic, and exclusive. My desire is to help as many people as I can and fight for equality for all humans.

When you became interested, how did you go about training yourself to be able to use DNA to find families?

I learned in the trenches, if you will. In my own case, circumstances arose that established that the only way I was going to find my own truth was through DNA. There were so many resources online, as well as search angels willing to help and talk me through it. By the time I had my answer, I had a solid foundation in the technique. From there I spent a couple of years as a search angel, volunteering my time to find answers for other adoptees. Interestingly, my first few cases were for distant DNA cousins to me. In every case, I was able to solve the mystery, sometimes confirming how they are connected to me.  About a year and a half ago, I reached out to a Los Angeles-based private investigator, Jay Rosenzweig, whose company Birthparentfinder.com specializes in finding birth family. He’d used DNA, but not to the full extent and with the capabilities I have. He brought me on and I was soon able to prove that genetic genealogy was vital to the success of a search company. I’ve solved more than 70 cases for that company as well as more than 100 independently in the four years since starting this work.

To what extent, if any, do you advise or counsel clients or potential clients about the process, perhaps to manage expectations or prepare them for any emotional repercussions?

This is so important to me. As I said before, I think my insight is what sets me apart from a lot of other searchers. My experience has taught me to reserve judgment for biological families who have a tendency toward rejection. It’s important to remember that trauma was involved for the parent in addition to the trauma that’s inherent in being an adoptee. Much of the time, biological mothers experienced something that they thought must be unique to them. I often counsel by recommending reading material (such as The Girls Who Went Away) to begin the healing and help them understand they don’t need to feel the shame that was instilled in them so many years ago.

I also counsel my clients to expect the worst but hope for the best. Every case is its own entity. Often, time is needed for individuals to process this revelation—weeks, months, or years. It’s not for me to force reunion or “out” anyone. At the same time, I believe that the other children of biological parents (if adults) are not off limits as a last resort. They deserve to know that they have unknown family as well.

What are some of the most common issues clients voice and how do you help them?

I often hear “I just want them to love me.” That’s not a healthy attitude, though understandable. It’s important to realize that it’s out of the ordinary for a stranger to love another stranger simply because there’s a genetic connection. Love is certainly something that can develop, but should never be expected. Clients need to establish exactly what their expectations are and keep them low. Anything beyond that is a bonus. For me, the most important thing is for everyone to know their origins and gain knowledge of why they exist.

Do you advise them about how to make contact? What strategies do you recommend?

My PI boss has a different strategy than I do. He believes that no adoptee should reach out personally without an intermediary. He also tends to cold call people. He’s very successful at this technique, but I’m generally not comfortable doing it myself. If that’s what the client wants, I usually have Jay do it. The first time I was hung up on by a biological mother, I really took it personally and it took the wind out of my sails. I realized that sometimes you only get one chance to reach out, and if it doesn’t go well the door may be closed for good. I recommend snail mail (especially when reaching out to older biological family). As I said before, I ask clients to write a heartfelt letter introducing themselves, providing some info about their lives and what their goals are in this endeavor. It’s important that they express that they are no threat to any family and are willing to allow the contact to call the shots. Including a photo is often a good idea as it puts a face to this human that you are related to. I usually write a cover letter introducing myself and giving a brief explanation of how I arrived at my conclusion. I always offer to elaborate by phone if further explanation is required.

Under what circumstances do you act as an intermediary? 

If that is what the client requires, I will always do so. It’s part of the service. Sometimes people (on both sides) are not comfortable with a stranger being involved. I always present arguments for both sides and let the client determine what is best. Sometimes I learn facts about the biological family that inform me as to what may be the best way to proceed. Incidentally, that earlier case where the mother hung up on me was salvaged. I called her back immediately and left a voice mail telling her that her daughter had just wanted to thank her. She called back the next day and apologized. I acted as an intermediary for several months in that case. That particular mother was terrified of the rest of her family finding out, and her husband did not want their adult kids to know. Yes, I feel that that is an outrageous expectation for any man to put on his wife, but I digress. Anyway, a few months later, the mother was still sending messages through me and I had to tell her that I simply couldn’t work for them for the rest of my life. I explained to her that her behavior was probably making her daughter experience a second rejection, and the daughter was well aware of how to contact her directly if she so desired.  She understood and they began talking directly.

In cases in which you’re not able to locate birthparent, are there similar challenges that block success? Are there issues other than a lack of close matches?

Yes!  The biggest challenge—and the most difficult to explain to clients when I’m at a roadblock—is that if there is pedigree collapse, endogamy, or simply an NPE within a family, my job becomes exponentially more difficult. I take cases based upon the level of the matches, but it’s not uncommon to find out that those higher matches are also adopted or have a misattributed parentage event in their family that they themselves were not aware of. I can usually build a tree based on a match tree with just a couple of names in it, but if I build a substantial tree by using traditional genealogy methods and I am unable to connect that tree to any of the other matches, that match is no longer helpful.

Are most clients for whom you’ve found family ultimately glad they searched or are there some who have regrets? 

As far as I know, no one has had regrets. I think this has to do with managing your expectations. Most people realize that just knowing the facts makes it worthwhile. I know, for me, I feel more connected to the earth as a result of knowing.

Do clients follow up with you—that is, do they tell you about their reunions?

Yes! Some of them have been interviewed on my podcast.

Do you work independently in addition to with an agency? 

I work independently if that’s how someone has reached out to me. I actually prefer to work with the agency because I don’t enjoy the sales aspect of a business. But if someone is a listener or a reader and they reach out directly I can work directly with them.

What advice do you have for people who are unable to avail themselves of professional services? What tools or resources might they find most helpful? 

There are several Facebook groups (DNA Detectives, Search Squad) that have members who are search angels. That’s where I learned everything I know now. Blaine Bettinger has some great books and, of course, my podcast is a great, if I do say so myself, especially for newbies.

What mistakes, if any, do people often make when searching for family on their own?

In my opinion, the biggest mistake (and I made it myself) is to lead with the fact that you are adopted, NPE, or donor conceived. This often sends up red flags for people who don’t want to throw a relative under the bus, even if they have no idea how they are related to you. Also, asking matches if they know someone who gave up a baby is rarely effective. These are usually deep secrets within families, and anyone beyond a parent or sibling would likely not be privy to such information. I think the best approach is to mention that you’re trying to understand your DNA and build your family tree. Asking them to share the names of all four of their grandparents and their birth dates and locations is the most effective way to build a tree for them.

When and why did you decide to start the “Cutoff Genes” podcast?

Oh boy. Here we go. Four years ago there was an event within my adoptive family that was traumatic and resulted in even more trauma for me and my immediate family. This event brought to the forefront the narrative of “the ungrateful adoptee” and how that lie can be used to manipulate a situation to benefit those who use it against an adoptee. For legal reasons I can’t really go into any more detail. Suffice it to say that I was traumatized to a level that some days I didn’t think I would be able to go on. I knew I had to do something to take me out of my thoughts and provide a service for others like me. A podcast was the most obvious choice for me. I had wanted to do it for a while, but the thought of taking on something so time consuming was overwhelming, and I have terrible attention deficit disorder. Anyway, when all of this was eating at my life, I realized that I had nothing to lose by putting something out there, at the same time using my background as a performer to satiate my creativity and feel like something positive could come from the trauma. I connected with my old friend Richard Castle and, originally, my friend Renee Colvert, who has her own successful podcast (“Can I Pet Your Dog?”). The result was this thing that people come for the info, but stay for the relationships and rapport. We’ve just released our 102^nd episode.

What do you love most about doing the podcast?

I love having a gab fest with Richard (my producer and co-host). Rich is a musician and songwriter, so he gets to be the voice of the listener. He asks me questions that probably a lot of the listeners are thinking as well. Also, I adore our listeners!  We have a Facebook group that’s very active and lots of friendships have formed there. We very much have a conversation with our listeners, and they often provide content and insight for the show.

What’s surprised you as you’ve done these shows? 

Rich and I tend to go off on tangents. Sometimes it’s a classic television or musical theater riff—we met doing a production of “My Fair Lady” almost 35 years ago—and other times we get into a “pun-fest.” We crack ourselves up and, what was surprising to us both, was that our listeners seem to love that part of the show as well. This is somewhat serious subject matter, and we often talk about unimaginable pain. We do our best to balance the mood. I’m very much a fan of alternative comedy and I wanted to model the feel of “CutOff Genes” on of some of my favorite comedy podcasts. I always say “I’ll have to laugh or I’ll cry.”

What kind of feedback do you get? 

All kinds!  When I first started the podcast, I was clear that I am not a scientist and it’s entirely possible that I may misspeak. I sometimes cringe when people describe me as an expert, because there are people within the science community and the science behind DNA that probably take exception to that. The fact is, I am not a scientist, but I’m proud to say I am very good at what I do. I always encourage listeners to reach out with corrections or clarifications, and they do not disappoint!

Follow the podcast on Twitter @cutoffgenespod, and join its private Facebook group.

In her new podcast, Everything’s Relative, writer and therapist Eve Sturges talks with individuals whose lives have been upended by DNA surprises.

She sits down, for example, with Joy, who was told at age 10 she had been donor conceived and who, growing up, had little if any interest in finding out about her birthfather. But when facts later emerged to demonstrate how much like him she was, she became driven to learn everything she could about him—a process she likened to dating—and thus developed a profound relationship with a man she’d never known, the birthfather who died many years earlier. As Sturges observed, Joy didn’t know she was missing pieces until the pieces fell into place.

And there’s Mesa, who, before learning that she was an NPE (not parent expected), had had a tumultuous childhood and already was no stranger to trauma. Her discovery triggered a bewildering identity crisis; suddenly she had a Hispanic heritage about which she knew nothing. Finding out that she had no connection to the family she’d grown up thinking were “her people” and wanting to connect with her biological family turned her life upside down. In situations such as these, Sturges observed, where NPEs reach out and connect with their biological families, they in some ways also must become disconnected from the families they’ve known.

One guest, who chose to remain anonymous, shared the heartache of learning that the birthfather he never knew had known about him and had always suspected that he was his father. And although “Anonymous” was able to meet a half-sister and learn about his deceased father, nothing could quite compensate him for all he’d lost. “I can’t hug him,” he said. “I can’t talk to him. I can’t look at him.”

Sturges doesn’t control the conversations, add narration, or overproduce. Rather than interview them formally, she lets them reveal their stories, prompting occasionally, chiming in from time to time, and— remember she’s a therapist—asking guests how the experiences make them feel. For the earliest episodes she found guests who lived in her Southern California locale and taped the podcasts in their homes, creating a casual, intimate atmosphere that gives listeners the impression they’re eavesdropping on a couple of friends chatting over a cup of coffee.

In these freewheeling talks, her guests let loose, acknowledging the gamut of emotions provoked by their NPE journeys. When the DNA discoveries were recent, the emotions can be raw, and when the guests have had some time to absorb, there’s reflection. Sturges and her podcast participants make no effort to tidy their thoughts or make them more palatable to those who may not understand. They say it as they feel it. These are conversations about shame, anger, betrayal, frustration, rage, grief, and even, sometimes, joy. There are tears and laughter, irreverence and profanity—all inspired by what’s described as the “mind fuck” that is the NPE experience.

Still in its first season, Everything’s Relative provides a community and platform from which NPEs and others affected by their discoveries can share their stories. People who’ve only recently learned of the change in their genetic identity may think their experiences are unique and feel extraordinarily isolated and lonely. Listening to the podcast, they quickly find they’re not alone, that their feelings and reactions are often much the same as those of other NPEs.

Sturges sums it up this way: Everything’s Relative is “where we talk about all the unexpected shit that happens when you mail in a DNA test.” And while that sounds lighthearted, these conversations fill an aching need and serve a serious purpose. As one guest said, “Listening to the podcast makes me feel normal.” It’s validating, she added, to know that someone else is going through the same craziness. Krista, an NPE and fellow therapist, tells Sturges, “The more we share our stories, the more we normalize them—as abnormal as they are—the easier it will be for those that come behind us.”

Here, Sturges talks about how the podcast came about and what she hopes it will achieve.Professionally I am holding back on the details of my story because—trust me, it’s a good story with at least one extremely interesting character—I’d like to explore different avenues of production resources to tell my story and I don’t want to give it all away just yet. It might be a book, a separate podcast, or a film project someday. I can’t give away all the spoilers in my first season!

My story isn’t over—my life is still happening, and the layers of this discovery are still unpeeling. There are very real and alive people involved, including the mom and dad that raised me, the siblings I grew up with, and the new siblings who have appeared. As I navigate my experience, I am also navigating a lot of relationships and different emotions and reactions from the people in my life. I’m approaching the details of my story delicately because I am giving the people I love a little bit of time to catch up and process their own experience within this journey.

I talk about this here and there in the podcast, but one of the challenges of this type of discovery is the time-consuming nature of it. I would love to visit my newfound siblings. I have a lot of questions for them! They live all over the country. Organizing a trip like that costs a lot of time and money, not to mention emotional resources and the logistical organizing of school and employment. I’m not in a place to drop everything as it is and dive deep into another world. I have three children, a husband, and an active professional and social life in Los Angeles. I struggle enough to find time for my everyday existence, let alone a whole new world of people and histories that I didn’t know about. I hope that doesn’t sound cold, but I have to take care of myself and my loved ones first.In spring 2018, a man reached out to my husband with details of my early life that were eerily specific. He claimed to believe he was my biological father. Having never questioned my paternity before, I figured the best thing to do was a DNA test. It confirmed that this man was correct. A whole history I had never known was revealed to me about my parents’ early 20s and the first years of their marriage.

This affected me in all of the ways that NPEs describe: I felt shocked, confused, angry, and dizzy. I understood the phrase “walking around in a daze” more than ever before. Nothing has changed and yet everything feels different. It’s affected my relationship with my parents the most deeply. We are all struggling to reconcile our different perspectives with one another. We have tried reasoning with one another by talking, fighting, emailing, letter writing, and lots of crying. Each of us has our own journey of grief to explore. Therapy is helping each of us individually. I like to think that our family love is stronger than this unexpected variable, but time will tell.My parents and siblings have always known about the podcast; they are supportive but not exactly enthusiastic. We have never seen eye-to-eye about what should or shouldn’t be kept private.It’s true. I have not yet tested with a mail-in kit like 23andMe or Ancestry. When the man who turned out to be my biological father contacted me, I arranged a test with a company that focuses on the legality of DNA and not so much the community-building. I went to a facility where a nurse roughly scrubbed the inside of my cheeks with Q-tips and shipped them to a lab for me. I received a letter in the mail confirming our relationship 99.9999%. I then did it again with the man who raised me, and the results were 0%.

I intend to do the tests soon, though. I want to learn more about the ins and outs of what people are talking about, and I also suspect there will be more surprises in my genetics and my heritage. It seems like the least I could do, considering my podcast!The reaction has been overwhelmingly positive. I think the episodes offer intriguing stories to people who are not in the NPE world, and they offer solace to those who are. There’s no real way for me to know, but I like to think that these stories help listeners make their own decisions about how to handle an NPE reality.Every guest has thanked me for giving them the opportunity to tell their story. I think the “regular world” underestimates how much pressure there is to keep quiet about our experiences. Right now, almost everyone comes to an NPE discovery feeling isolated and confused. By participating in the movement to be seen and heard, my guests feel empowered. It feels good to be of service; they all express the hope that this project helps others feel less alone and less silenced.I strongly believe that sharing stories is a part of creating community, and a part of creating history.My biggest blind spot was the world of fertility clinics, sperm donation, and assumed anonymity. Episode five sheds some light on the subject, but I suspect it’s only the tip of the iceberg. I’m fascinated by the different players involved and the psychology behind each person’s actions. Another surprise has been the vast difference between each individual’s personal beliefs about the definition of family and what this new technology is doing to affect that. More than anything, everyone wants to feel like they belong somewhere, but the ins and outs of how that feeling is achieved is different for everyone based on a plethora of factors.More than anything I think people are struggling with the dishonesty of their parents. I think this speaks to the overwhelming belief (or misbelief) that we know exactly who our parents are. Learning that there’s a lifetime of choices we weren’t previously aware of is unsettling. Parents are the first people to shape our world; some disruption of that shape is a normal part of growing up, individuating, and developing empathy. An NPE-type discovery, however, can completely destroy the shape. It’s too much for a lot of people to handle.I imagine I’ll stick with the NPE and DNA-discovery topics for now, but I’m open to the show evolving as stories come to me. I’d really like to expand beyond the person who directly had the NPE, though, because I want to explore all the perspectives. I’d like to talk with mothers about their decisions to keep paternity a secret from their children, to men who didn’t or did know they had children out in the world, to men who contributed sperm for money in college but are now being approached by adult children asking for answers. I want to hear from every person involved.Yes, I work with genetic identity issues, and it’s almost entirely due to my personal experience. Also there are so many testimonies online from NPEs who have had bad experiences with therapists who don’t understand what they’re going through. I’m determined to be a better therapist for the growing NPE world and also to educate the mental health community about this tidal wave of need that’s headed its way.There are very few in-person support groups for NPEs, although there’s a growing need. I will start a support group this fall that I will facilitate as a therapist. I am also available for individual therapy, but the group offers people an opportunity to share their experiences and learn from each other.I started exploring the idea of a podcast within a support group on Facebook. I asked the community to help come up with a title, and I posted updates as the project came together. Throughout that process, people volunteered to participate. I kept the first handful of interviews local because I wanted to meet in person and have the experience of talking face to face. I’ve got the technology now to interview people from anywhere though, so the circle is expanding. I am always actively seeking new stories!Subscribe to Everything’s Relative on iTunes, Spotify, or wherever you get podcasts. And Look for Sturges on Facebook and on Twitter @evesturges.

On an October day in 2016, Adrian Jones set out on what was for him a common pastime — a strenuous mountain bike ride with friends. Midway up a steep grade, Jones — who by all appearances was fit and healthy — began experiencing alarming symptoms including extreme fatigue, nausea, lightheadedness, and, ultimately, chest pain. His friends rushed him to Marin General Hospital, oddly the same place where the adoptee had been born almost 47 years earlier. There, he was diagnosed as having had a “widowmaker” heart attack, his left anterior descending artery having been 100% occluded.

Grateful to have survived this typically lethal heart condition, Jones heeded a voice he heard when he was in the ICU. It said, “Find your birth parents!” With the help of a genetic genealogist, he did, and he discovered that heart disease runs — gallops — in his family, having killed an uncle at age 52 and both of his maternal grandparents, his grandmother at 65 and his grandfather at 71.

Jones’ story illustrates why having a family medical history is essential. Had he known what he now knows, he would have been able to undergo appropriate screening and might have been able to detect a problem before it had the potential to become lethal.

Although many of us are blocked at every turn when trying to gather information about our inherited health risks, continuing to do everything possible to obtain such information — including advocating for the right to have it — is crucial. But until you’re able to know more about the potential issues that may be a part of your family’s legacy, DNA testing may be the only path you can take to improve your awareness of your genetic risks and minimize them.For most humans, the bulk of our DNA is sequenced similarly. A small percent of our DNA — roughly 0.5% — differs. Within that 0.5% are the genes that influence our risks for various health conditions and diseases. Though knowledge of DNA sequencing and the human genome in general has advanced tremendously, making it possible to detect vulnerability to many heritable diseases, there remains much that’s unknown. Thus, while DNA testing can help indicate possible health risks, at worst it’s imprecise and can be misinterpreted and at best it doesn’t provide the full picture. Understand going into it that it won’t give you a road map to your future health, nor will it diagnose disease. But it may permit early detection of diseases and in some cases can be a lifesaver.Although there are now many companies that offer direct-to-consumer (DTC) DNA tests, the best known of these, 23andMe, was the first to receive FDA approval to market tests providing information about genes influencing health and disease. Recently, another of the leading genealogical testing companies, MyHeritage, has begun offering a health test. The tests look for genetic variants called single nucleotide polymorphisms (SNPs) that are associated with risk for developing a number of diseases, including Parkinson’s disease, age-related macular degeneration, early-onset Alzheimer’s disease, and breast cancer. They also show whether you have a genetic variant (once known as a mutation) that may contribute to diseases you can pass on to your children, such as sickle cell anemia or cystic fibrosis. If you have one copy of a gene variant associated with a condition, you are a carrier. A child whose parents both have that variant will develop that genetic disorder.

But these tests don’t tell the whole story and don’t examine all genes that influence disease risk.

Before selecting one of these tests, especially when considering one from a lesser-known business, research the company’s track record, look at the credentials of the team, and ensure that you’ll have access to representatives who will answer all your questions. Look for guidelines about choosing a DTC test from the National Institutes of Health’s National Library of Medicine.If you’ve taken an autosomal DNA test for genealogical purposes, you can download your raw DNA file, which contains a sampling of your DNA. Then you can download that information to any of a number of services, such as Promethease, LiveWello, or Sequencing, that will use that raw data to generate health reports, in many cases involving many more conditions and risks than those addressed by the major DTC tests and in far greater detail. The results, however, can be both bewildering and anxiety-provoking. I’ve uploaded my DNA to each of these companies and, despite having been a health journalist for many years, I find the reports both difficult to understand and somewhat alarming. Even if you have a science background as well as the time and motivation to learn to how to interpret the findings, you may believe you understand the results, but it’s likely that without the assistance of a genetic counselor you may misinterpret the findings, and the consequences can be serious.

In addition to these third-party tools, new programs and apps are appearing almost daily that purport to tell you how to best eat, exercise, sleep, and even age based on your DNA. These may offer results pertaining to such traits as metabolism, muscle strength, sleep, and nutrient absorption. They may be interesting and entertaining, but their science base is questionable and they’re of little use if you’re looking to fill in the gaps of your knowledge about health risks. And as with everything, it’s a question of buyer beware. It’s a caveat that’s especially important when these companies also aim to sell you supplements, programs, or other products they claim are individualized to your specific needs as indicated by your genes. The evidence for the effectiveness of the DNA analysis and of the associated programs and products in many if not most cases is lacking.All of these DTC approaches have benefits and limitations, the former being chiefly that they’re simple, noninvasive tests that may allow you to become aware of health risks before a condition develops and to take preventive measures or they may point to existing conditions and lead you toward prompt treatment. They generally are less expensive than medical-grade tests and typically do not require recommendation by a physician. However, the gap is closing, with some newer, more affordable medical-grade options, such as tests by Invitae, Color Genomics, and some of the Helix tests, says Kirkpatrick.

Sadly, the list of the limitations of DTC testing is much longer:

Genes are only part of the picture. Just because a condition may run in your family doesn’t mean it’s truly all in your genes. Your genetic inheritance is just one component of disease risk. Also influencing your risk are your environment, your lifestyle choices, and the interplay of multiple genes. Moreover, although your genes don’t change with time, the knowledge about them and available testing options do. “Most genetic variants that are associated with disease are actually not predictive, meaning we can test for a condition but it doesn’t mean that condition is going to develop because there’s a lot more complexity to disease development,” says Kirkpatrick. A condition such as type 2 diabetes, for example, “takes more than 1,000 different markers and environmental exposures to develop, so it’s not just a one-gene, one-condition situation, and most diseases involve multiple genetic variants in multiple different areas. Individually, each of the markers may only have a small impact on the risk, but all together they can influence a person’s risk to develop that condition,” she explains.

They may provide false reassurance and arouse unnecessary worry. Consumers typically lack adequate information to allow them to interpret the results accurately and may believe, incorrectly, that because a test doesn’t flag any variants for a particular disease, they have no risk for that disease. The opposite is also true. They may see one or more variants flagged for a particular condition and assume it means they will develop the disease, when in fact the results do not, and cannot, indicate that. Genetic testing may reveal information that might be alarming, confusing, or that you simply might rather not know. If your test reveals a gene that contributes to a deadly cancer, for example, without additional information and context, you might experience a great deal of anxiety. As noted earlier, that anxiety might be misplaced, since that gene alone is no real indication of your risk and because false positives are not uncommon.

They support confirmation bias. This is when a test appears to confirm something one is expecting or hoping for. It happens frequently, particularly with reports from third-party assessments, says Kirkpatrick. Almost all of those reports, for example, she says, will flag some gene entries for breast cancer, colon cancer, and dementia. “Everyone has variants in their reports for all of these hundreds of conditions, and if they have them in their family histories, they’re going to think these tests have identified the genetic reason, but it’s quite possible that the genetic reason in that family wasn’t even on the test.”

There’s a risk of discrimination. While the Genetic Information Nondiscrimination Act of 2008 prevents employers and health insurers from discrimination based on DNA findings, that protection is not automatically provided when it comes to life and long-term disability insurance. The Genetic Non-Discrimination Act similarly protects Canadians.

The tests are not comprehensive. Perhaps the most significant limitation of most DTC tests is that they only look for certain variants within the genome — a method called genotyping. Kirkpatrick describes it as being “like playing a game of hopscotch down the DNA, where it looks at spots here and there but isn’t really complete.” It might pick out a variant that influences your risk for a condition, but there may be thousands of others it doesn’t look at. The more comprehensive approach used in tests given by healthcare providers is known as sequencing, which looks at longer stretches of DNA or even the entire genome. This difference may be of particular concern when it comes to certain conditions such as breast cancer. For example, some DTC tests look at only a few of the thousands of variants in the two breast cancer genes called BRCA1 and BRCA2, variants that tend to be found in people of Eastern European descent.

Finding these variants is important, because both women and men with one of these variants have a higher risk of developing certain cancers. The danger is that if these DNA tests do not reveal the presence of one of these other variants, consumers might think they’re in the clear and not only may pass on further genetic testing but also may slack off on routine breast and prostate care.

Even if a woman doesn’t have one of the variants flagged by these tests, it doesn’t mean she won’t get breast cancer. She still might have one of the many variants not tested for, variants that might put her at increased risk for breast and ovarian cancers. Furthermore, genes are not the only factors that influence whether she might develop the disease. 23andMe explains these pitfalls to consumers and encourages women — and in fact all customers — to consult with a genetic counselor before testing, discuss findings with their physicians, and consider further genetic testing.

“I’ve seen people falsely reassured when they really aren’t understanding that the raw data files are not looking at the entire BRCA1 gene, for example.” They don’t realize they could still have a genetic variation that’s not included in that raw file, Kirkpatrick explains. Furthermore, she says, the raw data analyzed is different from one company to another, and even individual companies have more than one version of their test, so the information that’s extracted for download and then uploaded can vary and have different markers.

Furthermore, tests don’t yet exist for all conditions that can be genetic in origin or for all genes pertaining to a particular disease.Because of these limitations, it’s wise for everyone taking DTC tests to discuss their findings with a certified genetic counselor — an expert with deep training in genetics and counseling — before dismissing, worrying about, or acting on results. And in cases in which a test indicates a risk for a disease, it’s necessary to validate those findings through medical-grade testing. You might be tempted to bring your results to your next medical appointment, but in many cases primary care physicians aren’t aware of all the tests and aren’t necessarily able or willing to evaluate them.

Kirkpatrick advises everyone who gets results from third-party sources to work with a genetic counselor who specializes in DTC genetics. “If you’ve found a particular variant you’re anxious about, we always recommend doing confirmation testing — repeating the test, but in a medical-grade laboratory setting.” About half the time, she says, the finding will not be confirmed.

It’s advice that even the leading DTC testing companies give. 23andMe, for example, advises all customers to seek such genetic counseling before taking an at-home DNA test and to follow up with medical-grade testing when findings indicate a risk. If costs are an issue, first talk with your doctor and your insurance company to see if you may be covered.

To find a genetic counselor, ask your physician or visit the National Society of Genetic Counselors, which has a directory of more than 3,300 practitioners.While DTC tests may give you some information about your health risks, they are less complete and in many cases less reliable than those you’d get from medical-grade tests chosen with the help of a genetic counselor. Unfortunately, many consumers aren’t aware there’s another type of DNA testing available to help assess their risks. Unlike most DTC DNA tests, medical-grade tests must be recommended or ordered by a healthcare provider and in many instances are covered by insurance. For individuals without a family medical history who suffer from mysterious symptoms or have developed health conditions, such medical-grade diagnostic tests can provide valuable information that will help physicians explore additional testing and target treatment methods.

For those who take medications for certain conditions, pharmacogenomic testing (PGx) examines genes that contribute to the way you will respond to a particular medication and whether you’re likely to have adverse reactions. This is helpful, for example, to guide dosages for people taking warfarin to reduce risk of stroke or to predict adverse effects in those taking statins to lower cholesterol.

Another type of testing, proactive screening, as the name suggests, looks for variants in genes known to be linked to diseases about which individuals can be proactive — those that can be influenced by behaviors or treated when detected early. This newer type of testing, which is largely not covered by medical insurance, is not yet widely used. “Most people don’t know how to navigate the system to access the testing, and the tests haven’t been around long enough for there to be widespread understanding of their value,” says Kirkpatrick.A potential game-changer in testing is a new program called My Gene Counsel, which, according to Kirkpatrick, is trying to help people access reliable genetic information and receive confirmation testing on a mass scale. According to the company’s website, its team of “genetic counselors, scientists, and patient advocates have created streams of information to answer the questions you and your doctor have about your genetic tests results and how to use them.” The company links your results to those streams of information and shares reports with you and your healthcare provider, updating you as new information emerges and recommendations change.

According to the company’s president and CEO, Ellen Matloff, the program “allows people who have had DTC testing and have a personal or family history of cancer to get information about their health results and do verification testing in a medical-grade laboratory, if needed.” It’s recently expanded, she adds, to include people who either have a personal and/or family history of cancer and have not had DTC testing, or who have no such history but who have had a cancer-related finding via DTC testing. The program includes genetic counseling by phone by a certified genetic counselor. This program is also innovative because as the science of genetic testing evolves and results shift, it will keep consumers up to date about what these changes mean to their health.

Another company, Invitae, says Kirkpatrick, is “helping push medical-grade testing into the DTC sphere. According to the company, “The new service allows consumers to initiate and order tests themselves, and then be paired with a trained, independent clinician who reviews health history and determines the medical appropriateness of their test. Once results are available, the service provides support on next steps, including genetic counseling as appropriate, and also makes it easy for consumers to share their results directly with their personal physician.” This approach is similar to MyHeritage’s decision to include healthcare providers in ordering and helping return results regarding medical information to customers, says Kirkpatrick.Genetic testing, when results are interpreted correctly, may be a boon to individuals who don’t know who their biological families are and who, thus, are in the dark about their health risks. However, it gives only a partial picture of the risks. Melanoma, Kirkpatrick explains, is an example of a condition for which family medical history is as important, if not more important, than the genetic testing. There are several types of melanoma, she explains, some of which run more strongly in families than others, but testing hasn’t yet been developed for all cases of familial melanoma. “So if you have a family history of melanoma, it’s important to know that so you can have annual skin checks and pay more attention to any concerning skin findings, not putting it off if something develops.”

Family medical history matters, and Kirkpatrick encourages everyone to take all steps possible to learn about it. Adoptees, for example, can attempt to gain non-identifying information from the agencies or states responsible for their adoptions. And those who were adopted in the minority of states that allow access to original birth certificates can use the information those certificates contain to try to track down their biological parents. Donor conceived individuals who don’t have access to family medical history and NPEs (non-parental events or not parent expected) who also lack information may have no means other than DNA testing for searching for their biological families. Kirkpatrick offers step-by-step strategies for using DNA to find family along with a thorough discussion of medical DNA testing in her new book, “The DNA Guide for Adoptees: How to Use Genealogy and Genetics to Uncover Your Roots, Connect With Your Biological Family, and Better Understand Your Medical History.” The tips she and coauthor Shannon Combs-Bennett offer, although targeted to adoptees, will be useful as well to help donor conceived individuals and other NPEs find family.