story

“I am thankful that she told me the truth when I asked” - Christa’s Story of a DNA Surprise

“I am thankful that she told me the truth when I asked” - Christa’s Story of a DNA Surprise

The recorded re-telling of a painful and emotional experience of uncovering a DNA surprise is helpful for others to read. It supports and validates others who are going through the same thing, and it provides insight for the friends, family, and professionals who will be there alongside a person on their journey following the unexpected discovery.

An important point that my next guest blogger, Christa, makes is that receiving the truth from her mother rather than denial held so much value to her. She was so grateful that her mom ‘came clean’ straight away when she came to her with the discovery that the father she had grown up believing was her biological father was not.

A DNA Surprise Five Decades in the Making - Part 2

THE STORY OF JUDEY AND GINNA: GINNA’S SIDE OF THE STORY:

Fishing has been something I’ve done nearly my whole life. It was a family affair; we’d pile in the boat and enjoy the relaxation and fun together. My dad and brother taught me to fish when I was three, and it is something I never stopped doing once I learned. Fishing is in my blood.

A DNA Surprise Five Decades in the Making - Part 1

A DNA Surprise Five Decades in the Making - Part 1

The Story of Judey and Ginna: Judey’s Side of the Story:

Birthdays have been bitter-sweet for me since I found out at age 21 that I was adopted as an infant. Since then -- and every year until last year -- the wish I made over my birthday candle was a desire to know who my biological family was.

National Society of Genetic Counselors posts leaders' experience with ancestry testing for Hispanic Heritage Month

Two lovely genetic counselors and leaders within the National Society of Genetic Counselors paired up to experience and write about having ancestry testing to learn more about their Hispanic roots. As NSGC’s Ancestry Expert, I was invited along to provide commentary. The post went up recently, just in time to recognize Hispanic Heritage month. Check it out!

Bringing you the latest Base Pair, Marc and Janet

Bringing you the latest Base Pair, Marc and Janet

The Base Pair posts are a series I started to highlight professionals in medical genetics who are a stellar team or have a special history that bonds them, like genetic base pairs A, T, G, and C in a DNA double helix. This Base Pair post is about Janet and Marc Williams, a beloved pair in the world of medical genetics and genetic counseling.

Surprise, you have a daughter: a DNA surprise for everyone in the family

Surprise, you have a daughter: a DNA surprise for everyone in the family

Amanda was shocked to find out in her late 30s that her father was not her biological father. Her mother was also shocked, having been pretty sure of her daughter's paternity all of those years.

Rising Like the Phoenix: Mary's DNA Surprise

Last month I published the first #DNASurprise story, written by Casey who discovered a family surprise after DNA testing. Another person, Mary, has bravely volunteered to share her story as well. 

“Do you wish you’d never done a DNA test?” - Guest Post by Casey

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From Brianne: Today's post is written by a guest writer. I'll call her Casey. Casey shares with us her DNA surprise, a shocking realization about herself and her connection with family that unfolded over time. I applaud Casey for finding the courage to write down her story. Writing can be difficult, triggering, and healing.

I know many of you will relate to Casey, even if your story is somewhat different. If you'd like to see your #DNASurprise story shared here, reach out to me. You never know how your story might help another person who's in your same shoes.   

If you'd like to join a secret support group on Facebook for the DNA Surprise you've discovered about yourself or another person, send me a DM. I'll need to hear a summary of your situation make sure the group is a good fit, then you'll need to send me the email address you have associated with your Facebook account so I can add you.  


“Do you wish you’d never done a DNA test?”

A friend at work asked me this question recently. For the first time in months, I had to really think about my answer.

“No,” I said, realizing that I actually meant it. Earlier this year, that answer would have been unthinkable. But as the word came out of my mouth, I knew it was the truth.

I grew up as the daughter of a single mom. My father and my mother had divorced soon after a hasty marriage in college, and he was an absent parent. I was very close to my grandparents, my great grandmother, and my aunts, uncles, and cousins; while I felt the absence of a father in my life, I had plenty of family around. My father and I met in my teens and a somewhat cordial but strained relationship developed, then died out when I moved away to attend college. We rarely speak, and my half sister from his second marriage is a stranger.

My maternal grandparents had always been interested in family history and genealogy, and I grew up hearing stories of cleaning up old family cemeteries, road trips to old homesteads, and hours spent in archives researching our family tree. When I married and had my own child, my interest in finding my own family history was piqued, and I began researching and building my family tree. Finding documents, stories, and sometimes even photographs of ancestors made them come alive to me, and I loved putting together the stories of their births, marriages, babies, jobs, houses, and moves throughout the country. I felt connected to these people and deeply rooted in my family history.

I felt connected to these people and deeply rooted in my family history.

In 2014, consumer DNA tests were gaining popularity among genealogists. I saved up my money, waited for a sale, and spit into a tube, eagerly awaiting my results. They were pretty much what I expected—my ethnicity showed I was from Great Britain, Ireland, and Scotland, with some Scandinavian and a few other European areas thrown in. I had a list of people who shared my DNA, although I could actually place only a handful—my mother’s second cousin, a few third and fourth cousins on my mom’s side. I even had a couple of matches who seemed to share really distant ancestors on my father’s side. I knew, through my research, that some of my maternal grandmother’s ancestors had immigrated from Ireland, and my maternal grandfather’s ancestors were from Scotland by way of Northern Ireland. My father’s family had immigrated from Ireland in the 1700s. So I was Irish, Scottish, and English? Not a surprise.

As time passed, I got more DNA matches, but few were closely related, and even fewer were recognizable. I became active in genealogy forums on Facebook, and helped answer DNA and genealogy questions from “newbies.” Consumer DNA testing grew in popularity, and more matches rolled in every week. Although I’d done my DNA test on ancestry.com, I decided to upload my DNA test results to other, smaller sites to see my DNA matches there. I wanted to confirm some of my genealogical ancestor “guesses” and find new relatives.

As time passed, I got more DNA matches, but few were closely related, and even fewer were recognizable.

In January of 2018, I got a notification from one of those other sites. The “You have a new DNA match!” emails were pretty common, and the matches were so distantly related that I couldn’t figure out how we were connected. I ignored most of them, but for some reason, I opened this email. The match was a close one—this man and I shared DNA at the level of a half brother or uncle—and I didn’t recognize the name. At all. What?

My new DNA match didn’t match my maternal relatives, so he was clearly related to my father. I spent several hours trying to figure out how it was possible my father had been adopted, as he was the middle child of a happily married couple and he definitely resembled his parents and siblings. Or, I wondered, had my grandparents somehow given up a child (who was now around my father’s age) for adoption? Yes: I, a reasonably intelligent researcher, a person who sometimes helped others with their genealogy and DNA questions, went there. My only excuse is that when it’s your DNA surprise—your story—sometimes you can’t see the forest for the trees.

When it’s your DNA surprise—your story—sometimes you can’t see the forest for the trees.

To make a long story short: the match was my paternal uncle. My biological father was not who my mother (or I) always thought he was—he was a college friend of my mom’s, and this was a surprise to her as well as to me. We were both stunned, shocked, and I think we probably both felt like we were going to throw up when we finally were able to talk about it.

The family I’d always known as mine, wasn’t. Those ancestors I’d carefully researched and whose stories I’d cherished? Not mine. But the worst part was that my biological dad was deceased. I’d never get a chance to meet him—for closure, or curiosity, or any other reason. Door shut. End of story.

Over the next few months, I felt like my world had turned upside down. I felt lost...it’s hard to find out in your late 40s that you aren’t who you thought you were all of your life, and I didn’t take it well. I cried at inopportune moments, I wondered what I’d done to anger the Universe, and I grieved for that family I’d lost. Similarly, I found myself mourning the relationship with the man I’d always thought was my father, though it had been practically nonexistent for years. I’d always harbored a tiny hope that we’d fix it someday. Now, there was not even a biological link to tie us together when nothing else had.

I felt like my world had turned upside down.

But—and there’s usually a “but” in these stories, right? I have a living uncle, with a kind and accepting wife, who wants to meet me. I have an amazing brother who is about a year younger than me and is like me in so many ways. He makes me laugh, and challenges me, and inspires me to be a a good big sister and a better person overall. I wish we’d been able to know each other growing up, but I’m glad we do now.

Is the “surprise dad” thing still hard? Oh, yeah. There are days when I have trouble dealing with my emotions. I’ll suddenly think of my not-father’s parents and miss them—and wonder if they ever suspected. (I don't think so.) I’ll drive by a battlefield where a relative died and think of his sacrifice…and then remember he’s not my relative. I think about my not-father and our fractured relationship, and I feel sad and guilty. I think of the lost opportunities to know my biological family--especially my grandmother, who by all accounts was a wonderful lady--and all the years I missed out on knowing my brother. It hurts.

I’ve gained so much, though, and that’s why my answer to my friend’s question was “no.” I don’t regret doing the DNA test. I’m slowly developing relationships with my new family, and I’ll be meeting them for the first time this summer. I’m learning about my history and undiscovered ancestors. I’m adding their stories in my family tree to those of my former ancestors, who still hold a place in my heart even though we don’t share genes. I know the truth now, and while sometimes the truth is uncomfortable and scary and sad, it’s also important. I’m a different person now, I think—or maybe I’m the same person, just with different roots and a different family. Everything I thought about myself has been challenged, and it’s been hard. But I think things will be OK. I think I’ll be OK.


Thank you for sharing, Casey. I'm looking forward to hearing about part two of your story. Sending positive vibes to you as you prepare to meet some of your new family this summer! 

- Brianne

When your friend becomes your own Genetic Counselor: the Base Pair series continues with Lola and Stephanie

With the Base Pair series on my blog, I aim to put faces to the professional title of "Genetic Counselor" and share the stories of my fellow genetic counselors, especially for those who perhaps have never met or spoken with one of us. There are thousands of masters-trained genetic counselors in the United States and worldwide, and our stories and the work we do are as diverse as the DNA we carry. The newest Base Pair, Stephanie Cohen and Lola Cook Shukla, have been friends and coworkers for years and once stepped into the roles of patient and care provider. I asked the two to share their story, and what makes their relationship unique.

How did you get interested in genetic counseling?

Stephanie:  I was working in a genetics laboratory doing basic research during a college summer, and I HATED it…..I was a little freaked out about what I would do with my biology degree because I knew I didn’t want to go to medical school and wasn’t cut out for bench-side research.  I passed by a poster every day  in the hallway of the biology department at CWRU – “What can you do with a biology degree?”, so I ordered a copy for my dorm room.  I stared at it every night, and the two careers that stuck out to me were “mushroom farm worker” (really??) and “genetic counselor” (interesting!). I was intrigued because I had always like genetics, and I like the idea of working with people.  I contacted our guidance office, they helped me track down a genetic counselor at University Hospitals.  After speaking with her for 15 minutes, I knew that was what I wanted to do!

Lola: In my high school biology class. I had a very progressive teacher who was already aware in 1982 of the potential role of genetic counselors. Over a model of a human skeleton, where I was reciting bones, he told me I really needed to do more with myself!

Did you learn about genetic counseling from someone you knew, or did you influence someone else to attend school for genetic counseling? 

Stephanie:  I hope I have influenced someone!  I have had a lot of students job-shadow me over the years, and I know several eventually went on to become genetic counselors (I can name at least 5). Claire Harwood, a current rock-star co-worker, shadowed me a few times while she was in college, and then volunteered as an intern in our office for a year before being accepted to graduate school. I can’t say that I influenced her to become a genetic counselor because I’m pretty sure that’s what she wanted to do when she first met me, but at least I didn’t drive her away, and she ultimately came back to work with us!!

 Lola: I am constantly urging others to consider the field of genetic counseling or other genetic careers. It is a hot profession and has much potential to do good for others!

What is your special connection to your Base Pair buddy? How did you meet?

Stephanie: When I moved to Indianapolis, Lola was one of the few other genetic counselors in town.  We met at the inaugural meeting of what ultimately became the Indiana Network of Genetic Counselors. A friendship developed over the years, beyond a collegial relationship, that includes regular get-togethers with a few other well-seasoned genetic counselors. Lola covered a maternity leave for me, adding a cancer genetics hat to her experience and taking good care of patients for me during my absence.

Professionally, we’ve worked on many projects together, including the passage of licensure in the state of Indiana and developing resources for the Indiana Network of Genetic Counselors. We’ve been a sounding board for one another over the years throughout career and personal life changes. I admire Lola’s fearless ability to take on new areas of expertise, learning what she needs to know completely and with great dedication. She is a true advocate for patients and our profession.

Lola: I know Stephanie as a good friend and top-notch cancer genetic counselor. I think we met through our overlapping jobs at a local hospital, but I really do not remember well! We go out socially for dinner with three other genetic counselor friends in the area who have bonded over the years. At our genetic counselor dinners, we laugh, talk work and family. Workwise, I know Stephanie from taking a prenatal job in the same maternal-fetal medicine department where she counseled prenatal and cancer patients. Thus, we have a work connection as well. I covered several weeks for her during a maternity leave counseling patients in the familial cancer risk center where she now works. I gained a huge and new respect for what she does as I witnessed the emotions of patients and families who had gone through so much as they dealt with familial cancer and risks to their relatives.

What’s the unique aspect to your relationship beyond being coworkers and friends?

Stephanie: I have had the privilege of providing genetic counseling to Lola for her family history of cancer. She was sweet to consider if I would feel uncomfortable in this role, considering the potential that I may have to give her difficult news. It is courageous to open your private life and past history to any medical professional, and can be even more difficult with a friend and colleague. I was honored and humbled that Lola would feel comfortable doing this with me. We had a frank conversation prior to her appointment about this, reassuring each other that we each felt comfortable in this different relationship.  

Lola: I began thinking more about my risk for cancer after my father developed his 4th primary cancer and my mother was diagnosed with breast cancer. I began asking Stephanie questions informally about my family history of cancer and what she thought.  As the years passed, more knowledge and genetic testing became available and I then made an appointment with her in the familial cancer risk center to formally talk about my cancer risk and testing options. Eventually, I decided to proceed with testing. I was worried about Stephanie potentially having to give me “bad news” from my test results. I did not want her to feel bad as a friend. She was great talking this out with me during our counseling session. It truly was a gift to have such a wise, open, and good friend to handle sensitive information and feel comfortable with it!

We both are lifelong learners and get very excited talking to each other about the changes in genetics and our field. We also enjoy sharing Indian and other exotic foods!

Stephanie and Lola enjoy a quiet dinner out, with kids and spouses back at home!

Stephanie and Lola enjoy a quiet dinner out, with kids and spouses back at home!

More about Lola and Stephanie:

Lola Cook Shukla is a genetic counselor with a broad background who has worked in pediatric, prenatal, and adult genetics. She also has worked in industry as a medical research analyst. Currently, she specializes in the genetics of Parkinson's disease, providing remote genetic counseling to participants who are part of a large Parkinson’s disease research study, sponsored by the Michael J. Fox Foundation. Lola is interested in new and innovative ways to provide genetic counseling services and serves on a working group developing practice  guidelines for telegenetics for the National Society of Genetic Counselors (NSGC) and also will be serving as co-chair of NSGC’s Health Information Technology  Special Interest Group (SIG) this upcoming year.

Stephanie Cohen is a genetic counselor who provides in-person and remote genetic counseling via telemedicine for hereditary cancer risk at St. Vincent Health in Indianapolis. Stephanie is interested in improving access to cancer genetic services, and serves as the chair of the National Society of Genetic Counselor’s Service Delivery Model subcommittee. She is active in training genetic counseling students as an Adjunct Assistant Professor at Indiana University as a clinical supervisor and co-instructor for a Cancer Genetics course. She has multiple publications in the field of cancer genetics and genetic counseling service delivery.

 

Like reading the Base Pair series? Read about my first two couples - a husband/wife couple of genetic counselors who met in graduate school and sisters-in-law who earned their degrees at different times.

Know a pair of genetic counselors who share a unique relationship? Perhaps two GCs who job-share or who work as a pair to cover the needs for an institution or geographic region? Send your recommendations to me, and maybe you'll see them highlighted in a future post!  

"Base Pair" series kicks off with Deepti and Sajid!

Learning how those in my profession of genetic counseling were drawn to the field interests me. There aren't too many of us -- around 4,000 genetic counselors practice in the United States, and a modest amount work outside of the US, often seen spelled with two Ls in counsellor.  

Each story of a GC's path to their professional niche is unique. 

TWO genetic counselors in one family piques my interest further (rare squared!). 

A fellow writer and genetic counselor Deepti Babu and her husband Sajid Merchant are one of the rare husband/wife couples in the field of genetic counseling. I decided to interview Deepti and Sajid and learn how there came to be two of them! Thank you for sharing your story, Deepti and Sajid. I enjoyed hearing your story, especially the part about the bed-and-breakfast host who took notes about you on her index card and later tried to be your "matchmaker". Sounds like your story was meant to be.


deeptiandsajidBasePairs

How did you get interested in counseling?

 

Sajid: During my fourth year of undergrad, my professor gave us a pamphlet on careers in genetics. It was a full two pages, but back then only had a tiny blurb on genetic counseling. It still caught my attention because it called for expertise in genetics and psychology, and my background was in genetics, psychology, and philosophy (ethics). However, I continued with my plans and started graduate studies doing research but felt like something was missing… my suspicions were confirmed after coming to the lab after a holiday long weekend. My lab colleagues were excitedly going on and on about something… we were all twentysomethings, so I figured they had a killer weekend of partying or something. Instead, I discovered they were thrilled about an experiment where a worm successfully flipped one way versus another! When I realized that I would never be excited about something like this, I decided to pursue what I loved. I was already volunteering at a few spots, including counseling, so I remembered that pamphlet and thought genetic counseling could work for me.

 

Deepti: Interesting, I guess we found out about genetic counseling at the same points in our lives! In my senior year of undergrad, a genetic counselor came to a Bio class to speak about her career. This was 1995 and I had absolutely no clue what she was talking about! I mentally filed it away under “interesting” and left it. I took a year off after graduating to decide whether to try for medical school a career in research (I’d already nixed culinary school, although I’d still like to go in my next life). I moved across the country to take a lab research assistant job in Tennessee, where I knew nobody. I learned a ton, including an incredible recipe for cornbread and that pursuing lab-based research was not for me. Somehow, my mind recalled that genetic counselor’s presentation and I contacted a local genetics clinic to shadow and learn more. It just went from there.

 

Did you learn about genetic counseling from someone in your family, or did you influence someone in your family to attend school for genetic counseling? How did that all come about?

 

Sajid: My family are largely actors, artists, musicians, and lawyers. The few “science people” or people in the medical field are a bit like the black sheep. So no one influenced me to apply to genetic counseling programs except my de facto second mother, a dear family friend, who pointed out that my background was ideal. I’m pretty sure a part of my father still thinks I should have gone into computers – the wave of the future – and encouraged me to take a Fortran programming course instead of philosophy during undergrad. However, as they have always been, my parents certainly were supportive once the decision was made!

 

Deepti: I think it was helpful that time passed between when I heard about genetic counseling and when I applied to training programs. There’s so much that you process when you’re not thinking about it! This time also allowed me to get solid exposure to the genetic counseling field before applying (because it’s not for everyone). No one in my family had a clue about genetic counseling when I was applying to programs – it was blank stares all around. My parents, both physicians, got behind it when I explained it to them (pretty remarkable, since much of it was taken on faith).

 

How does having a common profession influence topics of conversation and discussions during family gatherings?

 

Both: Probably like other couples in the same profession, we take shortcuts when talking about our work and share newsy updates with each other. We were fortunate to work together (in independent practices) in the same clinics for the first 15 years of our careers. It was awesome to have our most trusted colleague right there as a sounding board! Our sons (11 and 7) likely hear more about genetics and DNA than their peers – after all, they have been collecting CEUs all their lives by attending genetic counseling conferences, many even in utero! We figure that, at this point, they should have enough CEUs to recertify?

Sidenote by editor: Genetic counselors are expected to stay up-to-date and earn credits or CEUs for attending educational lectures or participating in other types of ongoing professional development. There is always something new to learn, making it a fast-moving and exciting profession. 

 

Have you received any surprising comments from having two genetic counselors in your family?

 

Both: Anyone that knows about the genetic counseling field’s demographics is usually intrigued, and those are often fellow genetic counselors. Most others think it’s interesting, but not super exciting – it’s like having two of any other profession in a family. It’s possible many people are trying to figure out what a genetic counselor even does in the first place, not how there are two of us in the family. We think it’s pretty cool, though, and Sarah Lawrence even wrote an alumni newsletter article about us, their first genetic counseling couple to graduate from the training program!

 

How did you meet?

 

Both: We were classmates in Sarah Lawrence College’s (SLC’s) genetic counseling training program and we’ve been a base pair ever since! Somehow, we both stayed at the same bed-and-breakfast when we interviewed at SLC. The host, a very (overly?) friendly and helpful woman, wrote down information about all her guests on index cards. Deepti stayed with her first; when Sajid stayed, the host got excited because another guest had recently stayed with her for the exact same reason. In fact, she enthusiastically pulled Deepti’s index card out – yep, with all her demographic details – and gave it to Sajid. Despite the fact that she’d just made a major confidentiality breach (we can just imagine the genetic counselors cringing as they read this), the host thought we’d get on well and wanted Sajid to reach out to Deepti. Bored while waiting to fly home from his interview, Sajid drafted a letter to Deepti but never sent it – his common sense finally kicked in and he realized it would be creepy. But, as fate would have it, we met at school and immediately hit it off – in fact, our classmates took bets on how long it’d take for us to start dating. For the record, Sajid was the only man in a class of 22 – people joke that he joined the field to meet women, but he got his Master’s and met his future wife in the program… not bad, eh?

 

More about Sajid and Deepti: 

 

Sajid Merchant, MS, CGC is the Lead Genetic Counsellor for the Edmonton Medical Genetics Clinic and Assistant Clinical Professor in the Department of Medicine and Dentistry at the University of Alberta, as well as a past President of the Canadian Association of Genetic Counsellors. Sajid earned his Master's in Human Genetics/Genetic Counseling from Sarah Lawrence College in 1999. He is particularly interested in the delivery of medical genetic services, the ethics of genetic counseling and testing, inherited blood disorders, and enjoying good beer and chocolate (both dark, of course).

 

Deepti Babu, MS, CGC, is the Vice President of Communications and Patient Advocacy at ThinkGenetic, Inc. and incoming Director-at-Large with the National Society of Genetic Counselors. She earned her Master's in Human Genetics/Genetic Counseling from Sarah Lawrence College in 1999. Her 15 years of working with families with genetic conditions infuse her writing, editing, and communications work and numerous volunteer projects. She is also often poring over cookbooks, being grilled by her sons on superhero factoids, or writing about her family’s foodie gene on her blog.

Do you know of a genetic counselor "Base Pair"? Encourage them to contact me through my website, and perhaps you'll see your friends or colleagues highlighted in a future post!

About that viral internet story of the husband and wife who found out they were twins...

How do you know a fake news story from a real one? We all thought we used to know. We all now have doubts creep into our minds. This is unfortunate, and it's our world now until we figure out how to solve it.

A recent "news" story has gone viral, a story about a couple struggling to conceive a child whose doctor did testing and supposedly determined they were siblings, twins even, by results of genetic testing and by putting together pieces from the history of their adoptions.

The possibility that this type of situation could happen is real. Closed adoptions and undisclosed use of donor sperm and eggs mean not everyone who is out there dating knows whether they have crossed paths with a genetic relative in their search for a mate. 

I retweeted the story when I came across it, and although I posted on Facebook soon after an update that the story was unconfirmed due to no identifiable first-hand sources willing to come forward, I have yet to retract it or say much more until now.

This story cannot be confirmed, because no names have been released. The doctor - if an actual person - has not stepped forward. The couple - if an actual couple - hasn't either.  

The source is sketchy. Other news sources found it un-sketchy enough to pick up the story and carry it forward, but should I have followed suit? Is there a right answer to this question? 

So here I am today, having possibly been a willing participant in the spread of fake news but unsure. I'm not going to retract the two tweets I sent out linking to the story, because they shed light on situations that actually do arise in the world. 

I still stand by a claim I made earlier that genetic testing has and will again suddenly and unexpectedly reveal a couple is closely related. There is precedent to this outside of this viral possibly real/possibly fake story, but no one is willing to step out publicly yet. 

So to my readers, I am sorry if I am spreading fake news.

I don't know if the "husband and wife twins" story is fake news or not.

I do know that DNA testing that identifies genetic/familial links between individual is powerful, and powerful in ways that can be devastating. Let's be aware, and let's be sensitive and compassionate when it does happen.