Why do adoptees want DNA testing?

Anna Childers is a genetic counselor at Vanderbilt University in Nashville, Tennessee. Last year, she interviewed adult adoptees on their perspectives on DNA testing as part of her graduate degree from the University of South Carolina. Her study queried adults who had been adopted as children about the importance of DNA testing and their motivations for pursuing DNA testing in the at-home setting.

Anna presented her results at the 2017 National Society of Genetic Counselors annual conference, and the findings were consistent with other past reports of the use and motivations of DNA testing by adoptees.

As an active participant in the world of genetic genealogy and someone who has interacted with adoptees and adoptive parents through my professional work and personal life, this topic holds special importance to me (and many others!).

In this post, Anna shares a summary of her project's outcomes with readers. If you would like more details about the project or to be kept abreast of any updates related to the work Anna has done (when full results are published publicly, for example), you can check back here on my blog over time, or reach out to Anna yourself (anna.k.childers@vanderbilt.edu).   

Great work, Anna! These results are an important contribution to the body of knowledge that will help those affected by adoption gain better access to information that may impact their health, their families, and their rights. 

- Brianne

P.S. Readers, interested in this topic? I have additional links related to adoption and DNA listed in my newly-updated resources section and also provide private consultations about various DNA topics (including health/medical) for all those affected by adoption as well as their family members.


Anna Childers writes:

The public’s knowledge about the role of genetics in disease is constantly growing. At the same time, the market for direct-to-consumer genetic testing (at-home genetic testing) continues to expand. Companies such as 23andMe and AncestryDNA allow you to order a genetic test without speaking to a healthcare provider. These test results can - depending on the company - offer information on disease susceptibility, carrier status, ancestry, and many other areas of interest.

One group of customers taking advantage of the ever-growing at-home genetic testing market is adoptees. Previous research has shown that adoptees appear to be more motivated than non-adoptees to learn about their genetic disease risk but have similar responses to health-related information. In our study, we interviewed 14 adoptees that received some sort of health information as a result of their journey with at-home testing.  We asked these adoptees about their motivations for pursuing testing, their satisfaction with their results, their emotions throughout the process, and their interest in meeting with a genetic counselor.

Adoptees described three main motivations for pursuing at-home genetic testing:

1) identity-seeking

2) a desire for health information

3) general curiosity

This idea of seeking some form of an identity, for some adoptees, corresponded with the search for biological family. For others, it meant learning more about their ethnicity. Both provided adoptees with the opportunity to connect with something bigger than themselves. One adoptee described this search, saying “people are proud of their heritage, and all your whole life, you don’t have one…a nice diverse [ancestry] to me was being able to go ‘oh gee I can associate with that, associate with that, find out about all those different cultures.’”

 Adoptees also shared a variety of emotional reactions to the newfound information, but the strongest emotional responses were reported in reaction to ancestral information, or information regarding both ethnicity and biological family. For example, silence from one adoptee’s biological family led to the feeling of being a “dirty little secret.” Another, after learning that her heritage was different than what she had been told her entire life, described the time spent looking for her biological family as “30 years of absolutely wasted time.”

Since health-related genetic testing was a theme of the study, familiarity of the concept of genetic counseling was assessed. When we asked adoptees about their interest in speaking with a genetic counselor, the majority of the adoptees found some sort of value in talking to a genetic counselor. The adoptees said that this kind of information would be useful if they were found to carry certain genetic traits, if a new health concern arose, or would be beneficial for their family members.

Genetic counselors are professionals trained in dealing with both the emotional responses and the educational questions that come along with genetic testing. The insights from this study were shared with genetic counselors during the 2017 conference of the National Society of Genetic Counselors in Columbus, Ohio. The research is also being prepared for publication and upon publication, full study results will be available for a larger audience to read and to learn.

In the words of one of the adoptees interviewed, “[adoption] affects all the generations going forward because [adoptees] missed out on that giant piece [of information].” It is up to genetic counselors to help adoptees sort through what these results might mean for them, both in the emotional and informational sense.


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Bio: Anna Childers is a pediatric genetic counselor at the Monroe Carell, Jr. Children’s Hospital at Vanderbilt University in Nashville, Tennessee. The work summarized in this blog post was completed in 2017 as a part of her graduate work while a student of the University of South Carolina’s genetic counseling program.

 

A new year, a new resources section on WatershedDNA.com!

It's a new year, and it's a new resources section for the Watershed DNA website!

Here's what part of the new section looks like.

Here's what part of the new section looks like.

I've refreshed my resources list, fixed links, added a search box, and reorganized my list of free resources to help you find your way to more information on the DNA topics of interest to you.

Sections at this time include general, ancestry, health, adoption, and donor conception. 

Check back again in the future, as I'll be updating sections and resources over time.

Also feel free to send suggestions my way if you've found a particularly helpful online resource that you think more people should know about. 

Link to the Resources section here!

- Brianne

From mentor/mentee to business co-founders: Ellen and Danielle share their story of connection in my next Base Pairs post

In the world of DNA, a base pair is a set of genetic letters that join together from opposing strands of the double helix. The two letters go together like peas and carrots. T matches up with A, and G matches up with C, composing a rung of the DNA ladder. Without base pairs, we'd have no double helix and we'd have no DNA molecule.

In the world of people, it's much the same. We rely on strong and lasting relationships to weather the storms and appreciate the calm moments of life. People find a fit and link themselves together, whether it's because they are family, they've forged an intentional friendship, or they share a common experience that bonds them for life. 

My next Base Pair is a set of genetic counselors whose relationship started unsuspectingly...just one curious student shadowing a professional working in her area of academic interest. Over time, the relationship evolved into one of mentor/mentee, then to that of co-workers, and eventually, business co-founders.

One of the takeaways from the responses I received from Ellen Matloff and Danielle Bonadies is the message of the value of creating opportunities for other people, and of fostering and encouraging their innate abilities.

Some of the best gifts we can give another person with dreams and goals are opportunities and our belief in their potential. 

I am happy to share the story of Ellen and Danielle as the next post in my Base Pair series.    

-Brianne


HOW DID YOU GET INTERESTED IN GENETIC COUNSELING?

Ellen: I took a Genetics course as a sophomore in college and a genetic counselor came in to speak to the class.  That led me to observe with a few genetic counselors, and then to do a formal internship.  Sold!

Danielle: I first got interested in genetics after my high school biology teacher showed us a video about gene therapy for cystic fibrosis.  It was the first time that learning became exciting for me.  A spark was lit and I knew that I’d follow a path in the sciences.  

DID YOU LEARN ABOUT GENETIC COUNSELING FROM SOMEONE YOU KNEW? DID YOU INFLUENCE SOMEONE ELSE TO ATTEND SCHOOL FOR GENETIC COUNSELING?

Ellen: I did not learn about the field from someone I knew, but I have been told that I’ve influenced several students who, like me, were looking for a career path and heard me lecture to their classes about genetic counseling.

Danielle: During college, I worked in a lab studying cystic fibrosis where another member of the lab was a genetic counselor.  She spent some of her time in the lab and some of her time meeting with patients.  I shadowed her and found that working with patients was a critical missing link.  

WHAT IS YOUR SPECIAL CONNECTION TO YOUR BASE PAIR BUDDY? HOW DID YOU MEET?

Ellen: I first met Danielle when she contacted me to learn more about the field of genetic counseling!  (There is a theme building here …)  She spent a day with me at my job at Yale, and then came back as our Fellowship student while she was a graduate student at Sarah Lawrence.  We then hired her as a genetic counselor as soon as she graduated!

Danielle: As I started exploring the field of genetic counseling further I reached out to several genetic counselors to shadow them. Ellen got back to me right away and I spent a few days over my winter break shadowing her. I never would have guessed that a few days of shadowing would turn into my first job, years of mentorship and multiple joint career paths.   

WHAT’S THE UNIQUE ASPECT TO YOUR RELATIONSHIP BEYOND BEING COWORKERS?

Ellen: I’ve now known Danielle for more than a decade, across different jobs, and across many different transitions in our own personal and professional lives.  We’ve climbed many mountains together, and I’m always grateful to have her on my team — never more so than when she helped me form My Gene Counsel. She is one of mGC’s greatest assets. 

Danielle: Ellen began as role model when I entered the genetic counseling field and has added such incredible depth to my career.  She’s been my boss, a colleague, a co-author, a friend and now the CEO of My Gene Counsel.  She has always been my biggest advocate and my career path has blossomed because of it. Her unrelenting support and has made all the difference in my life, both professionally and personally.  


Danielle Bonadies is the Director of the Cancer Genetics Division of My Gene Counsel, a digital health company that links current, updating, evidence-based information to genetic test results.  Danielle was previously the Assistant Director of the Cancer Genetic Counseling Program at Yale where she designed and ran several interactive, on-line patient education and communication sites, and is a well-known speaker in Genetics.  Danielle has co-authored multiple book chapters and articles in genetic counseling and testing and was involved in the publication of several key articles about the high rate of result misinterpretation amongst clinicians ordering genetic testing.

          Danielle Bonadies

          Danielle Bonadies

Ellen Matloff is President and CEO of My Gene Counsel, LLC, a digital health company offering accurate, dynamic solutions digital genetic counseling solutions to consumers and clinicians. Ellen is a certified genetic counselor who has served in a number of leadership positions in the profession, including being Founder and Director of the Cancer Genetic Counseling program at Yale Cancer Center.

                Ellen Matloff

                Ellen Matloff

How do you check out an online DNA test for its reliability?

How do you know if a DNA company you found online is reputable? And whether its results are reliable? These are common questions. And they are difficult to answer.

If you're asking about tests that will give you ancestry or genealogy information, the International Society of Genetic Genealogy is a great place to turn. Their beginner's guide section has a list of articles to get you headed down the right track. I've also written about choosing between the options in this area of DTC testing before and linked to other articles with advice in this blog post.

Companies have a lot of freedom in marketing DNA tests online and through commercials and social media posts. But not all DNA tests that claim to give you information about how your body works or what health risks you carry are the same. 

To be a savvy consumer, a website review is a great place to start. Investigating details on a company website can tell you a lot about them and how reliable their testing might be.

Here’s a checklist to help you begin your detective work. The ideal DTC genetic testing company's website should have: 

  • A description of what their DNA test(s) tells you and the technology they use to do it
  • CLIA and CAP numbers clearly listed on the home page
    • This is proof they use a lab with qualified staff and lab techniques and are abiding by at least baseline standards and that their approval is up-to-date.
    • Note that CLIA and CAP alone aren't sufficient evidence of a company's legitimacy. Even some questionable companies claim CLIA certification and CAP accreditation (review Soccer Genomics's site as an example). 
  • A toll-free contact phone number
  • An online "chat box" or email address to send questions to
    • You should get a response back within 24-48 hours, especially if the company promises a customer service team.
  • A section listing the names and credentials of their employees
    • There should be a team of scientists and on that team should be ones with advanced degrees in genetics. Their science team members should be listed by name
    • If the marketing team is a lot larger than the science team, stop and think what that might mean about the company's motivations and goals.
    • Review the "We're hiring!" section of the site, if there is one -- this can give you an idea of the company's priorities and where they are investing their resources. 
    • A company that includes certified genetic counselors on their team gets automatic bonus points! Genetic counselors tend to be pretty tough on DTC companies and expect rigorous science and high-quality testing and reporting. We see people make life-changing decisions after DNA testing, and because of that, won't settle for low-quality tests.
  • A reference section citing the medical studies that support their testing
    • Studies should be recent -- roughly within the past three to five years.
    • If an article they list is behind a paywall, you should contact the company and request to read it. They should send a copy to you. Having your emails ignored is a big red flag!
    • Studies cited should have been published in reputable* medical/science journals (*This can be hard to determine unless you are an expert in the given field of the journal; everyone should be aware there are predatory science journals that will publish anything if someone pays for it, whether or not the science is solid.)
  • Information on the site that allows you to gauge how long the company has been in business
    • Links to news articles and press releases about them, written by others
  • Sample reports you can see before deciding whether to order their test or not
    • Reports showing what both "positive" and "negative" results look like should be available, whether or not you've put a DNA test in the online shopping cart. 
  • A “Terms of Service” document and privacy policy
    • Like sample reports, you should be able to review these before you get to the online shopping cart section. 
    • Read them carefully. They should explain what happens to your biological sample of DNA (does it get stored?), who will get your genetic data after testing's complete (will it be sold to pharma?), and whether you have choices about what is done with your data. 

Beware of companies whose websites are simplistic or do not state where they are based. Some DNA companies you'll run across online are based out of countries without oversight of business practices.

There are a number of online genomics companies using shaky science to back up big claims. Don't fall for one of these! If a claim sounds too good to be true, there is a chance it is. Make sure to do your due diligence before you place that test into your online checkout cart.

A special side note: Companies that talk about testing your telomeres or mitochondrial DNA for health, medical, or longevity purposes are ones of which to be especially wary. The analysis and medical interpretation of testing on these two things are much more difficult to decipher than standard DNA testing, and bold claims about at-home tests that analyze the telomeres or mitochondrial DNA are to be approached with caution, and suspicion.

Have you already picked out a test you want but are having some reservations about ordering it or sending back your sample? Reach out for a one-time session, and I'll be happy to go through the company and its sample reports with you before you decide.

DNA Testing: Considerations Before You Test

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If you’ve seen a television commercial about DNA testing and thought about ordering a kit for yourself, you aren’t alone. DNA tests, once confined to paternity courts, forensics labs, and medical clinics, are now available for purchase at the drug store or online. The number of tests climbs by the year along with the uses.

With the growth of tests like those from Ancestry and 23andMe, questions naturally arise. These tests promise to connect people to unknown genetic relatives, reveal ethnic background, and possibly uncover latent health factors. Most of the time, no huge discoveries are made from an at-home test. But there is a lot to consider before diving in, as some sticky situations are arising for a minority of testers.

Many of the points to consider are tucked away in the terms of service you agree to when you order a kit.

But how many of us read all the fine print or can read between the lines to fully comprehend a companies’ warnings? Here are some of them, converted into language we all can understand:

  • Some companies plan to sell your de-identified genetic data and health survey results for profit or will turn it over to researchers or pharma. Are you okay with this?
  • Some people discover family secrets as a result DNA testing, like a hidden adoption in the family or somebody not matching a parent as a biological child. How would you and family react to this type of surprise?
  • Some people have discovered that family lore or suspected ethnicity differs from what the DNA shows. How might you feel if a DNA result raises questions about the genealogical truths that have been passed down through your family?
  • The majority of DNA testing evaluates only a tiny fraction of a person’s entire genome (sometimes as little as 0.02% of it, in fact). Do you know what type of genetic technology is being used by the company you’re ordering a kit from, or how much of your DNA sequence is being taken into account?
  • DNA results in the medical setting undergo intense scrutiny and must meet rigorous standards of accuracy and usefulness. At-home tests don’t have to meet these same standards, and recurrent issues with at-home DNA results have come to light. Do you understand the extent of limitations for the test you are ordering?
  • Impact of DNA results on the ability get different types of insurance in the future is a common concern, and the legal protections and potential risks are moving targets. How will you know if the benefits will outweigh the risks for you?

Many people find tremendous value in the results they receive and say that DNA testing has filled in a piece of the puzzle that couldn’t have been filled any other way. The promised benefits outweigh the possible risks for many.

Consider speaking with me or another genetic counselor as you explore your options and are making a decision. Genetic counselors are specially trained professionals who can help you think through and understand the terms of service you’re agreeing to when you hand over your DNA sample, whether to a consumer testing company or in the medical clinic.

Whether the testing you consider has implications for health, family, or ancestry, there’s no better time to think ahead about the results to come than the moment you swab your cheek or spit in a tube. 

This article was originally published in the November 2017 Trail Living Magazine and is published with consent of the editor.