Genetic Testing for Adoptees: Key Considerations and Benefits
Adoption Advocate No. 180 - Genetic testing has become increasingly common in the United States, raising important considerations for those who complete such testing and for their genetic relatives. For many adoptees, the decision to complete genetic testing often carries additional considerations, including implications for connections to one’s birth family, and for the possibility of accessing new health information. This article highlights key considerations— both pros and cons—for adoptees interested in understanding genetic testing, so they can decide what is best for them.
Although important, it is outside the scope of this article to directly address considerations for adoptive parents testing their children who are too young to consent or even understand the implications involved with genetic tests.
What Is At-Home Genetic Testing?
At-home genetic testing involves submitting a sample of saliva, blood, or a cheek swab to private companies such as Ancestry, 23andMe, MyHeritage, and Gene by Gene[1]. The prices for this testing range from $99 and up, depending on the package. DNA is extracted from the sample and tested for specific genetic compositions[2]. It is important to clarify that this process is used to “... detect select clinically relevant variants in genomic DNA... to report and interpret genetic health risk and reporting carrier status. It is not intended to diagnose any disease.”[3] In simpler terms, these tests look at genetic markers that can indicate health risks and the possibility of carrying a disease but are not able to offer determinative results like individual diagnoses.
Different testing companies often analyze different genes, and different genes are responsible for indicating information about ancestry, ethnic origin, and kinship. For example, single nucleotide polymorphisms or SNPs are analyzed to link family connections and trace an individual’s origins and the migration patterns of their ancestors[4]. As a result, tests from different companies may vary or seemingly contradict one another.[5]
The Rise of Genetic Testing
With recent advancements and an increase in the availability of genetic tests, it is increasingly common for people to submit their genetic samples to commercial ancestry and health databases. In 2018, the Associated Press-NORC Center for Public Affairs Research found that 17% of American adults have completed genetic testing, and an additional 52% were interested in doing so.[6]
This rise in genetic testing can partially be attributed to the desire to learn more about one’s personal genetic information or family connections, topics that are especially pertinent to many adoptees. In 2019, Pew Research Center found that among those who used mail-in DNA testing services, 87% of people wanted “to learn more about where their family came from.”[7] Additional primary motivations included “get[ting] information about their health or family medical history” and “connect[ing] with relatives they might have but didn’t know about.”[8] The potential to learn more about these facets of oneself makes genetic testing particularly enticing to adoptees who lack family medical history or connection to biological family members.
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…among those who used mail-in DNA testing services, 87% of people wanted “to learn more about where their family came from.
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Recent Survey Results From Adoptees
In 2023, National Council For Adoption surveyed over 1,200 adoptees on pertinent adoption-related issues, including genetic testing. The findings show a large majority—over two-thirds of adult adoptees—completed genetic testing, with most doing so for reasons related to ancestry/relatives more than for health/medical purposes. These results are provided in the tables below.
Table 1. Adoptee DNA testing
| Genetic Testing | Foster Care N = 154 |
Private Domestic N = 617 |
Intercountry N = 447 |
|---|---|---|---|
| Yes | 68.8% | 70.0% | 64.2% |
| No | 31.2% | 30.0% | 35.8% |
Table 2. Reasons for genetic testing
| Reasons for Genetic Testing (select all that apply) | Foster Care N = 106 |
Private Domestic N = 432 |
Intercountry N = 287 |
|---|---|---|---|
| Understand medical situation/condition | 20.8% | 16.9% | 12.5% |
| Obtain general health information | 34.4% | 33.1% | 32.0% |
| Search for relatives | 47.4% | 48.0% | 39.6% |
| Learn more about ancestry | 61.0% | 60.5% | 51.2% |
Important Considerations
Before taking genetic tests, it is imperative to research the potential risks and benefits. While some concerns may remain the same for everyone, such as confidentiality and future insurability, adoptees may have additional social, emotional, and ethical issues to assess before deciding which path is best for them. This section offers an initial overview of important pros and cons for those beginning to consider the issue. Further consultation with a medical provider, genetic counselor, or adoption-competent therapist can help adoptees further explore their options.
Benefits
For adoptees who do not know their family history, genetic testing provides the potential to learn more about their ethnicity and origins, build family connections, and partially redress a lack of genetic health history information.
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…genetic testing provides the potential to learn more about their ethnicity and origins, build family connections, and partially redress a lack of genetic health history information.
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Ethnicity and Origins
Ancestry tests offer the potential to answer some of adoptees’ questions regarding their biological heritage. The results may show an individual their geographic origins, racial classification, and offer post-result opportunities to virtually connect with relatives who have also taken the tests. This could lead toward answering questions adoptees have about their identity—but it could also lead to additional questions or add more puzzle pieces to their identity formation.
Family Connections
In addition to learning about one’s ethnicity and origins, genetic testing companies can help adoptees create family trees and connect with estranged family members. If other relatives have submitted ancestry tests, the website can locate DNA matches. In 2019, Pew Research Center reported that 27% of participants “learned about close relatives they didn’t know about” from mail-in DNA tests.[9]
Discovering unexpected kin may come as a surprise to many, but for some adoptees, it is what they are looking for, and genetic testing provides an opportunity for that search.
Health Information
DNA tests also offer adoptees the potential to learn about their health information. This is important because tests can inform participants about their family’s medical history or their predisposition to certain illnesses. DNA tests look for genetic changes or mutations that can lead to or increase an individual’s risk of developing a genetic disorder.[10]
For example, one mutation that DNA tests can find is the BRCA1 mutation, which is a predisposition towards cancer.[11] Approximately “72% of women with a BRCA1 mutation develop breast cancer and 44% end up with ovarian cancer.”[12] Women without this mutation have a 12% likelihood of developing breast cancer and a 1.3% likelihood of developing ovarian cancer.[13]
Although genetic tests are not diagnoses, adoptees can share these health reports with their physician and use them to take proactive and preventative measures to ensure long-term health by learning about these predispositions. Studies have shown that “family history and genetic data have the greatest clinical impact on medical care” and “genetic factors are more important than environmental factors for several cancers.”[14] Given these benefits, many adoptees may desire to take genetic tests to fill gaps in their health history.
Drawbacks
Despite the plethora of benefits genetic testing can offer adoptees, there are also some concerns regarding accuracy, privacy, and ethics that adoptees should consider before taking a genetic test. These drawbacks may also have impacts on other family members, not just the adoptees themselves.
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…there are also some concerns regarding accuracy, privacy, and ethics that adoptees should consider before taking a genetic test.
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Accuracy
Although not perfect, genetic testing technology can often accurately locate users’ ethnicity and origins. However, it is harder to predict “the exact level of genetic relationship between matches.”[15] This means that while companies can confidently assign the relationship between a parent and child or a sibling, assigning relationships with extended relatives is harder because “many people happen to share the same amount of DNA.”[16] For example, half-siblings, aunts, uncles, and grandparents all share 25% of their DNA with the person who submits their DNA for testing. As a result, it is hard to precisely assign these relationships. Therefore, results may only report these genetic relationships as “Close Family” and leave it up to the user to determine what type of relationship accurately describes the connection.
In terms of predicting health risks, it is important to note that genetic tests cannot definitively predict diagnoses or health outcomes. Therefore, having a risk variant does not mean an individual will definitely develop a health condition. Individuals can also develop conditions even if they do not have the corresponding genetic variant. “It is also possible to have other genetic risk variants not included in these reports.”[17] Extraneous factors, such as lifestyle and environment, can determine whether or not a person develops certain health conditions, but these are not factored into the health reports. In other words, the testing may lead to a “false positive” or “false negative” assumption regarding a negative health outcome and such information could lead to a physical, emotional, or other toll on the person involved. Additionally, without corresponding family health history, the information gained from genetic testing may be less helpful than with that family health information.
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…genetic tests cannot definitively predict diagnoses or health outcomes.
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Privacy
A common hesitation about completing genetic testing is a fear of data sharing with government organizations and other private entities, such as insurance companies. If an insurance company knows an individual is predisposed to certain diseases, it creates the potential for discrimination, as insurers may then choose to raise their rates. However, the government has implemented laws to alleviate these discriminations that may marginalize specific groups.[18] In 2008, the Genetic Information Nondiscrimination Act was passed to ensure that people who get genetically tested cannot face medical discrimination or higher future insurability premiums.[19] However, there are limitations to this act, as it does not cover life or long-term care insurance for smaller companies or potential employers.[20]
In 2020, the U.S. Department of Justice announced a policy in which law enforcement can utilize DNA submitted to genetic testing companies to help solve crimes in cases in which the sample does not match those available in the FBI’s Combined DNA Index System (CODIS).[21] Although some major genetic testing companies require a court order to conduct these genetic searches, there is no guarantee those same protections will remain legal in the future. In July 2020, a Florida judge granted a detective a “search warrant to obtain access to nearly 1 million genetic test results from individuals who had not elected to help law enforcement.”[22] Situations like these can threaten privacy and confidentiality and may set a precedent for allowing warrants to companies with even larger genetic databases.[23] Despite this issue, in 2019 Pew Research Center found that 48% of American adults say, “it is acceptable for DNA testing companies to share customers’ genetic data with law enforcement agencies to help solve crimes.”[24] Regardless of personal beliefs, this is an important factor to consider before submitting a genetic test.
Ethical Concerns
When an adoptee submits DNA tests searching for individuals with a genetic relation, they may begin a path that leads to unwanted connections. These ethical considerations are often raised in the adoption community: Is it problematic for adoptees to reach out to their birth families? What if those members of the birth family do not want to be contacted?
Such considerations were true before the advent of DNA testing, but the ability to be connected with more distant relatives (i.e., cousins, grandparents, etc.) increases the likelihood of uncovering a relationship that some may want to stay private.
It is natural for adoptees to seek birth family information, and birth family contact often results in rewarding, meaningful relationships. At other times, it may lead to one or more parties being upset or disappointed in the connection. Navigating this can be complex, and adoptees are encouraged to consult with an adoption-competent therapist to help prepare for these connections.
Conclusions
Before taking a genetic test, adoptees should understand the entirety of the genetic testing process, including the potential benefits or ramifications, and consult trusted and qualified professionals for support along the way. For any adoptee who is looking to take a genetic test, there are support groups and forums of people who are experiencing similar things. There is no wrong answer to the question “Should I take a genetic test”? It is a highly personal question that deserves thoughtful consideration.
Additional resources relating to genetic testing:
- Direct-to-consumer genetic testing: advantages and pitfalls
- What Can At-Home Genetic Tests Tell Me About My Health?
- Tempted to have genetic testing? First ask why
- Direct-to-Consumer Genetic Testing: Value and Risk
- What Consumers Need to Know About Home Genetic Tests
- Genetic Testing and Adoption: Clinical Panel Discussion
- Genetic Testing and Adoption: Important Considerations for Adoptees
Name: Kate M.
Type of Adoption: Adopted from Vietnam
Genetic Testing: Yes
Reasoning: I wanted to know more about my ancestry and medical history since I have no information about my biological family.
Name: Nicky L.
Type of Adoption: Domestic Adoption
Genetic Testing: No
Reasoning: I have never considered doing genetic testing because I sought out and found both my biological mother and father when I was 22 years old. I think if I had not been able to find them then I would have considered it.
Name: Erik R.
Type of Adoption: Private Domestic
Genetic Testing: Yes
Reasoning: To help round out the story of me. To find out about my health, my heritage, and to find biological relatives.
Name: Mia B.
Type of Adoption: Adopted from China
Genetic Testing: No
Reasoning: It has not been convenient for me because they are expensive, but I am interested in taking one in the future to learn about possible genetic health conditions.
Name: Chauncey S.
Type of Adoption: Adoption from Foster Care
Genetic Testing: Yes
Reasoning: I got a genetic test kit as a gift and was curious about it. Later, it unexpectedly ended up leading to a biological relative finding. It connected me to my bio father’s side of my family that I didn’t previously know.
Additional Resources
About National Council For Adoption
Founded in 1980, National Council For Adoption (NCFA) is a leading authoritative voice for adoption and is passionately committed to the belief that every child deserves to thrive in a nurturing permanent family. NCFA’s nonprofit work promotes a culture of adoption through education, research, advocacy, and collaboration that aims to serve children, expectant parents, birth parents, adopted individuals, adoptive families, and adoption professionals. For more information, please visit www.adoptioncouncil.org
References
[1] Parks, A. L., & Incze, M. A. (2022). What can at-home genetic tests tell me about my health? JAMA Internal Medicine, 182(6), 691. https://doi.org/10.1001/jamainternmed.2022.0529
[2] Ibid.
[3] 23andMe. (n.d.). How your DNA becomes a report. https://www.23andme.com/genetic-science/
[4] AncestryDNA® Learning Hub. (n.d.). How does AncestryDNA® work? https://www.ancestry.com/c/dna-learning-hub/how-does-ancestrydna-work
[5] Parks, A. L., & Incze, M. A. (2022). What can at-home genetic tests tell me about my health? JAMA Internal Medicine, 182(6), 691. https://doi.org/10.1001/jamainternmed.2022.0529
[6] Connelly, M., Hernandez, M. M., Alvarez, E., Benz, J., Tompson, T., & Swanson, E. (2018). Genetic testing: Ancestry interest, but privacy concerns. The Associated Press, NORC Center for Public Affairs Research. https://www.norc.org/content/dam/norc-org/pdfs/Genetic%20Testing_%20Ancestry%20Interest,%20But%20Privacy%20Concerns%20__%20NORC.pdf
[7] Graf, N. (2019, August 6). Mail-in DNA test results bring surprises about family history for many users. Pew Research Center. https://www.pewresearch.org/short-reads/2019/08/06/mail-in-dna-test-results-bring-surprises-about-family-history-for-many-users/
[8] Ibid.
[9] Graf, N. (2019, August 6). Mail-in DNA test results bring surprises about family history for many users. Pew Research Center. https://www.pewresearch.org/short-reads/2019/08/06/mail-in-dna-test-results-bring-surprises-about-family-history-for-many-users/
[10] Cleveland Clinic. (2022, May 21). DNA Test & Genetic Testing. https://my.clevelandclinic.org/health/diagnostics/23065-dna-test--genetic-testing
[11] Pomerantz, D. (2019, August 8). 23andMe had devastating news about my health. I wish a person had delivered it. STAT. https://www.statnews.com/2019/08/08/23andme-genetic-test-revealed-high-cancer-risk/
[12] Ibid.
[13] Ibid.
[14] May, T., Strong, K. A., Khoury, M. J., & Evans, J. P. (2015). Can targeted genetic testing offer useful health information to adoptees? Genetics in Medicine, 17(7), 533–535. https://doi.org/10.1038/gim.2015.58
[15] AncestryDNA® Learning Hub. (n.d.). AncestryDNA® Test Accuracy and Precision. https://www.ancestry.com/c/dna-learning-hub/ancestrydna-test-accuracy#:~:text=Accuracy%20is%20very%20high%20when
[16] Ibid.
[17] 23andMe. (n.d.). 23andMe genetic health risk reports: What you should know. https://www.23andme.com/test-info/genetic-health/
[18] U.S. Equal Employment Opportunity Commission. (2008). The Genetic Information Nondiscrimination Act of 2008. https://www.eeoc.gov/statutes/genetic-information-nondiscrimination-act-2008
[19] Ibid.
[20] May, T. (2018). Sociogenetic Risks — Ancestry DNA testing, third-party identity, and protection of privacy. New England Journal of Medicine, 379(5), 410–412. https://doi.org/10.1056/nejmp1805870
[21] Office of Public Affairs. (2019, September 24). Department of justice announces interim policy on emerging method to generate leads for unsolved violent crimes. U.S. Department of Justice. https://www.justice.gov/opa/pr/department-justice-announces-interim-policy-emerging-method-generate-leads-unsolved-violent
[22] Murphy, H. (2019, December 23). What you’re unwrapping when you get a DNA test for Christmas. The New York Times. https://www.nytimes.com/2019/12/22/science/dna-testing-kit-present.html
[23] Ibid.
[24] Perrin, A. (2020, February 4). About half of Americans are OK with DNA testing companies sharing user data with law enforcement. Pew Research Center. https://www.pewresearch.org/short-reads/2020/02/04/about-half-of-americans-are-ok-with-dna-testing-companies-sharing-user-data-with-law-enforcement/
