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 (firstname.lastname@example.org).
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.
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:
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.
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.