Tag Archives: DNA testing for adoptees

What Should Adoptive Parents Do About Adoptees’ Often Absent Medical Histories?

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“International adoption leads to family health mysteries.” That’s the title of an important article which I believe we adoptive parents need to ponder and act on. I’d argue that adoption generally can lead to medical mysteries, since often there is little or no medical history provided to the adopted person.

As an adoptive parent, I filled out forms at the pediatricians’ office for my children when they were little. I’d include whatever info I had for each child, and then put N/A on many items. In truth, it didn’t seem like a big deal to me at the time.

I’ve learned so much over the years. It’s a very big deal.

Now that my children are adults, now that two are parents themselves, I see how much uncertainty, frustration, suffering, and hardship emerge from not knowing one’s medical history.

I didn’t know some 35 years ago that I could have and should have advocated doggedly for the information. While I can’t change the past, I can speak out about ways to do better now.

I hope that any prospective and new adoptive parents will do so. Get all the medical information—physical and mental—that you can about the child’s family (parents, grandparents, cousins, siblings, everyone).

Make sure your child’s doctor knows about (and uses) the Comprehensive Health Evaluation of the Newly Adopted Child, from the American Academy of Pediatrics.

Tell your pediatrician that you know her job is harder because there is not a complete medical history. Ask that she talk with her colleagues about not being complacent and accepting of this ethical inequity.

For adoptive parents whose children are still minors, check with your agency (or even better, the birth family) as to any new medical developments over time, including years after placement.

What can those of us with adult adopted children do?

  • Apologize for not having been a better advocate when they were little.
  • Become educated about direct-to-consumer genetic testing, such as AncestryDNA and 23AndMe. I gave my children DNA testing kits several years ago. I’ve learned lots since then.

The kits can be helpful. They can help locate relatives, sometimes. They can provide some medical information.

They have limitations and constraints. They can open unexpected doors, and evoke unexpected reactions and emotions. They can place private information into huge corporate databases. They can provide information used by law enforcement entities. (Police Are Getting DNA Data From People Who Think They Opted Out; Racial Disparities in Databanking of DNA Profiles; Your DNA Test Could Send a Relative to Jail.)

  • So: do your reading and knowledge-gathering about DNA testing. Be available and supportive to your adult adopted son or daughter, as objectively and lovingly as possible without interfering or judging.

Per the article: Share goals with your doctor. Do all routine screenings. Follow up with a genetic counselor and genetic testing at a hospital or clinic.

  • Help your children pay for these expensive tests and counseling, if your child is open to that.

Many of these genetic tests and the attendant counseling costs are not covered by insurance. That means that, as happens too often, many adopted people are unable to access what is a basic human and civil right: their own medical information.

Consider this an opportunity if not obligation to provide financial assistance so that your adult children can have that information.

Here are some additional articles to consider:

What It’s Like to Fill in the Gaps in Your Health History When You’re Adopted

When Adoptees Uncover Their Medical History

Learning Your Family Medical History as an Adoptee

The Harsh Reality of Living Without Any Medical History

Genetic Testing in Adoption

Family Health Histories: Invaluable for Adoptees’ Medical Care and Self-Identity

Blackstone Buys Ancestry.Com: Ramifications for Adoptees?

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The private equity firm Blackstone has purchased the DNA testing giant Ancestry.com for $4.7 billion. According to Reuters, Ancestry.com is the world’s largest provider of DNA testing, which includes finding family members as well as medical information.

DNA testing companies have marketed mightily to adoptees, in the U.S. and internationally. Because U.S. and international adoptees are often prevented legally from obtaining their original birth certificates (aka the basic human and civil right that we non-adoptees take for granted) and often have limited medical histories, they are wooed by the DNA companies to get around laws and thus access their own information. For some adoptees, it’s been wonderful; for some, it’s been complicated. For some, it’s a dead end of fourth and fifth cousins, and little help otherwise. “If I’m Adopted, Should I Have DNA Testing?” gives an overview by a genetics counselor. It was, however, written in 2018, and a lot has changed since then.

There have been increasing concerns about the preservation and sharing of DNA, including by law enforcement officials. In February, six months ago, Pennsylvania police had a search warrant to gain access to Ancestry.com’s database of 16 million DNA profiles. Ancestry refused. It’s possible that situations like this could go to the Supreme Court. In any case, other DNA companies do share their DNA data with police, scientists, marketers and others, and may not be making that reality clear to their customers.

For international adoptees, DNA testing is often the only way to gather information short of traveling to the country. Two Chinese adoptees who were first cousins found each other via DNA testing—and also found they lived 12 miles apart and were from the same orphanage in China. IamAdoptee did a series of posts about DNA testing for Korean, Chinese, and Colombian adoptees. Adoption Mosaic recently held a We the Experts panel (the experts being adoptees) about “Adoptee Liberation or Exploitation: Pros and Cons of DNA Testing.” The adoptees were from the U.S., China, Korea, and Colombia, and had a variety of perspectives about why they chose to use or not use DNA testing.

Some Black adoptees have expressed concerns about DNA databases that might be used by police, given the concerns over police violence against Black people and inequitable incarceration rates. For example, “One fear is its potential to place innocent people under police suspicion. In her book Inside the Cell: The Dark Side of Forensic DNA, New York University law professor Erin Murphy warns that the practice of searching for genetic relatives could cast wide nets of suspicion over families, and lead cops to test a person’s DNA despite no independent evidence linking them to a crime.” Some DNA companies retain DNA and share it in an unregulated way, which has significant current and potential ramifications.

One option for Black people is AfricanAncestry.com, which says this on its webpage:

  • We do not maintain a database of customer information.
  • We do not sell or share customers’ personal or genetic information.
  • We do not provide customer information to law enforcement.
  • We do not biobank your genetic material. All genetic material is destroyed at the lab.

AfricanAncestry.com describes itself this way: “the world leader in tracing maternal and paternal lineages of African descent having helped more than 750,000 people re-connect with the roots of their family tree.” It may be an option for Black adoptees from the U.S. and from Africa.

With Blackstone, a billion dollar corporation, now owning Ancestry.com, also a billion dollar corporation, the stakes around privacy and information have grown daunting indeed. For adoptees, DNA testing is a possible avenue to access relatives and medical history, but at what price?

More U.S. states need to allow adoptees access to their original birth certificates. Adoptees in Massachusetts are currently working on this, as are advocates in other states. Adoption agencies and lawyers need to insist that all available information provided about adoptees at time of placement is as accurate, thorough, and current as possible. Adoptive parents need to demand the same at placement. Knowledge of who your parents are, and an accurate medical history, should not be exceptional, costly, and arduous information to obtain.

Korean Adoptee Wins Right in Korean Court to Meet Her Korean Father, And Be Registered on Family Registry

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This is a breakthrough ruling for Korean adoptees. A Korean court June 12 ruled in favor of adoptee Kang Mee-sook, adoptive name Kara Bos, who was raised in the U.S. She now has the legal right to meet her Korean father, and be listed on his family registry. She had originally searched for her mother to no avail, and then found through DNA that she had a 99.99 biological connection to a Korean man named Kang. He and his family, however, refused to meet with her, and so she took action through the Korean courts. 

This ruling means that she can be registered on her father’s Korean family registry as “a person acknowledged,” which is a significant part of the Korean family law system. She was born out of wedlock, and still hopes to meet her mother. She will meet her father on Monday in Korea.

As an adoptive parent, I have long held that adoptees should have the right to their own identity as a civil and human right. This is an enormous groundbreaking ruling for Korean adoptees, who make up the largest segment of international adoptees, and could set a precedent of sorts for other international adoptees seeking access to their identity and information. I wish Kang Mee-sook/Kara Bos all the best.

I had previously written about the case here.

You can read an English version of the story from a Korean newspaper here.

Here is a link to a New York Times story about the case.

This is a landmark case for international adoption adoptee rights and could perhaps have ramifications for other adoptees searching for their truths.

Korean Adoptee Files Paternity Suit Against (For?) Her Korean Father

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Kara Bos was adopted from Korea to the US when she was 2 years old. Now, 36 years later, she has filed a paternity suit in Korea to be legally recognized by her Korean father. 

As many adoptees have done, Kara used DNA testing to locate Korean family members. Following up on results which connected her to a cousin and nephew, Kara traveled to Seoul and took DNA tests there. Those results identified an 85 year old Gangnam man with 99.9% probability of being her father. Kara apparently has two half-sisters in Korea, and they have have refused to connect directly with the man she believes to be her Korean father. 

On May 29, 2020, a court hearing in Seoul is scheduled to take place in order to enter Kara in the father’s family registry. The Korean family registry is an important and historical part of Korean culture, as it officially identifies family members and thus can affect citizenship, inheritance, and more.

Among the reasons Kara wants to meet her Korean father is to learn why she was abandoned, and to have information about her mother. “He is my only link to finding out who my mother is, as my adoption documents list only ‘abandoned.'”

Kara says that adoptees “need to know who our parents are, where we come from, and why we were abandoned, and the Korean government doesn’t do anything to help us with that. We want truth. We want answers to our past.” 

“I want my story told so that Korea understand the excruciating pain and rejection an adoptee has to go through even as an adult on their return to find out their birth story.”

Read the Manila Bulletin article here: “Korean-American adoptee files landmark paternity suit against her biological father in South Korea.”

The Korean adoptee community has been especially active in promoting DNA testing. Here is one source for information and tests.

Why Are American Adopted Adults Denied the Right To Know Who They Are?

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There is simply no good reason. As an adoptive parent of two sons born in the United States and twin daughters born in Ethiopia, I believe that adopted people have the basic human and civil right to know their original family, to know their original names, to know their medical history, and to choose whether they want to pursue a reunion, once they have this information.

Still, today, in 2017, no other group except American adult adoptees is denied the right to their original birth certificates, to know who their biological parents are, who their biological grandparents are, who their biological siblings are, what their ethnicity is, and what their genetic history is.

It astounds me how many non-adopted adults and how many adoptive parents are willing to continue to deny adopted persons access to information about who they are.

How about if we listen to adult adoptees, as well as the many organizations which represent them, as the best advocates for the right to their own birth certificates?

Right now, in New York State, Governor Andrew Cuomo is being urged by 45+ national and international adoptee organizations, as well as hundreds of individuals, to veto a bill that is costly (Adoptee Rights Laws estimates a cost of $6 million),  convoluted, and thoughtfully opposed by organizations such as the New York-based Donaldson Adoption Institute (DAI). Read the article “Give adopted people unencumbered access to their origins” by DAI chief executive, and adopted person, April DInwoodie. Read the list of adoptee organization and individuals who oppose the bill and urge Gov. Cuomo to veto it here. Information from New York Adoptee Equality is available here.

New York, and many other states, can enact far better, less costly legislation that is fair and transparent.

One commonly touted reason for opposing access to original birth certificates is that birth parents were promised confidentiality about the adoption. However, if they were promised this by a lawyer or doctor or adoption agency worker, it was an unenforceable assurance. There has never been any law that guarantees that birth parents would never be contacted by their children. It simply does not exist. In fact, adoption records were largely public until about 60 years ago. Records were sealed largely because of the stigma of illegitimacy then, but not to prevent people from contacting each other. Records have been unsealed in many states since, and judges can unseal records in emergencies. We have moved in the adoption community away from shame, secrecy, and lies, toward transparency, openness, and fairness. The Donaldson Adoption Institute’s report An Examination of the History and Impact Of Adult Adoptee Access to Original Birth Certificates provides detailed information.

Another common rationale is that allowing access to adopted persons will increase the number of abortions. There is little evidence for this claim. Further, abortion is an alternative to pregnancy, not to adoption. Adoption is an alternative to parenting. “The abortion rates in both Alaska and Kansas, states which grant adult adoptees unconditional access to their original birth certificates, were lower than the national average as a whole – 14.6 and 18.9 abortions, respectively for every 1,000 women between the ages of 15 and 44, compared to the national rate of 22.9 (Source: Alan Guttmacher Institute http://www.agi-usa.org/pubs/journals/3026398.html). More information on this is available here and here.

A few U.S. states currently allow full access, though many states require adopted adults–not children anymore–to undergo mandatory counseling, to work with state-employed intermediaries, and to pay high fees. These requirements essentially infantilize adopted persons, treating them as children, buying into the narrative that adoptees should simply not be curious about who they are. Understanding who we are is a basic human pursuit and instinct.

I would be remiss if I did not note that DNA testing has affected search and reunion in adoption on a local, national, and global scale. Mothers are locating the children they placed for adoption; siblings and cousins are finding each other. Facebook groups provide astonishing amounts of support and guidance for adoptees to locate their birth family members. Among the many resources are DNA Detectives, DNA Adoption Community, and the Global Adoption Genealogy Project. Amazon Prime has sales on DNA kits today. All that said, adult adoptees should still have the legal right in the U.S. to access their own records, just as every non-adopted person does.

Adoptees raised in loving homes by loving adoptive parents have the right and perhaps the need to know as much as adoptees who had miserable adoptive families. The issue of gratitude is a volatile one in the adoption community, but being happy or grateful that one was adopted does not seem to me to be a reason not to want (or deserve) to know one’s original family.

Foster children who are adopted have their personal histories, their medical histories, and their names. Many international adoptees have their original birth certificates.

But American adults adopted as babies are denied the basic human and civil right to know who they are, a right which should be held higher than an ostensible promise of privacy. Only nine states in the U.S. currently allow total access to original birth certificates. Other countries around the globe allow far better access for adopted persons to their records. American adult adoptees should be allowed to know who they are.