Plight of Norwegian Korean Adoptee With Rare Genetic Disease Highlights Systemic Issues With NCRC

Plight of Norwegian Korean Adoptee With Rare Genetic Disease Highlights Systemic Issues With NCRC and Western Governments’ Policies Regarding Birth Parent Information Disclosure.

The JoongAng article:
‘”Severe Rare Genetic Disease, But Access To Biological Parents' Information Is Prohibited"…Tears of A Norwegian Korean Adoptee”

Thank you to Chang Seon Kim for the link.
Shared to Paperslip on March 18th, 2025.
Translation via ChatGPT.
Some BOLDS and Red Highlighting ours.

”The Child Rights Protection Agency” is the SAME as “The National Center for the Rights of the Child” (NCRC).

Please see multiple related articles under the dropdown menu below:
“NCRC - Preservation of Korean Adoption Agency Records As Of July 2025 + NEW ADDRESS!”

”The JoongAng
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”Severe Rare Genetic Disease, But Access To Biological Parents' Information Is Prohibited"…Tears of A Norwegian Korean Adoptee

Published on 2025.03.19 at 5:00 AM | Updated on 2025.03.19 at 5:01 AM
Reporter: Lee Ah-mi

Alice Anderson (Korean name: Kang Bu-ja, 53), who was adopted to Norway in 1972, in a photo taken before her adoption. Photo: Alice Anderson. (Please see original article for photos).

"It feels like my insides are burning."

Alice Anderson (53), who was adopted to Norway in 1972, expressed her physical pain this way. Her Korean name is Kang Bu-ja. Her adoption papers listed her as an "orphan" without an exact birthday. It wasn't until 1996 that she learned she only had one kidney. Since then, she has faced various health issues.

She stated, "I suffer from continuous diarrhea and blood in my stools, and it's difficult to swallow food. I also have pulmonary fibrosis, so I don’t go out except when I’m working," adding, "To get an accurate diagnosis and treatment, we need to determine whether having only one kidney is due to genetic factors or issues that arose during development. For that, I need my parents' genetic information." In 2022, she received a diagnosis suggesting she may have "Mixed Connective Tissue Disease," which is influenced by both genetic and environmental factors.

Around 6 PM on the 15th, Alice Anderson (53), an adoptee from Norway, was participating in a video interview with the JoongAng Ilbo reporters. (Zoom capture). (Please see original article for photos).

As her pain worsened, Alice sought information about her biological parents, but both the Norwegian and Korean governments evaded responsibility for eight years. In 2020, she sent a letter to the Norwegian Prime Minister urging the right to information for adoptees but received a response stating, "This issue must be resolved by Korea; Norway has no responsibility." Norwegian medical professionals also stated, "Alice's condition is unusual, and since she is not of Norwegian descent, we cannot allocate research resources."

In 2016 and 2019, she traveled to Korea to search for her biological parents. She managed to get a lead on the "Kang family of Iri (Iksan)" from Holt Children's Services and used that information to find her biological mother’s fifth cousin online. She requested official confirmation from Holt based on that information, but there was no response. The Child Rights Protection Agency attempted to contact her biological mother by mail and phone, but the mother strongly denied the adoption, and the matter was closed.

When asked what she would like to say first if she met her biological parents, Alice replied, "I wouldn't be angry because I understand it was a difficult time. I just want to talk about how we’ve been." She further emphasized, "All overseas adoptees should have the same rights as Koreans," adding, "Norway never sends its children abroad for adoption. Korea must also establish a system that allows single-parent families to safely raise children."

Alice Anderson (53), adopted to Norway in 1972, with her Norwegian adoptive mother during childhood. Photo: Alice Anderson. (Please see original article for photos).

Unable to Obtain Biological Parent Information for Medical Reasons

Alice is not the only one seeking information about her biological parents for medical reasons. Matthieu Sung-Tan (38), adopted to France at five months old, is suspected of having Fatal Familial Insomnia (FFI), a rare disease caused by genetic factors that requires genetic information from biological parents for an accurate diagnosis. However, the Child Rights Protection Agency has stated that it cannot release this information due to a lack of legal grounds. His wife, Loriane Simon (41), reported, "My husband’s condition has deteriorated to the point where he is barely conscious and it is difficult to communicate." Matthieu's two children may also have inherited this condition.

According to Article 36 of the Special Adoption Act, adoptees can request the disclosure of adoption information from the Child Rights Protection Agency or adoption agencies, which must obtain consent from the biological parents before releasing information. However, if the biological parents are deceased or cannot consent for other reasons, information may be disclosed without consent for special reasons, including medical purposes. Yet, in practice, very few cases have seen the personal information of biological parents disclosed under this provision, raising concerns about violations of adoptees' medical and life rights.

The Child Rights Protection Agency stated, "In Matthieu Sung-Tan’s case, the biological mother is alive. He received mail confirming the request for consent but did not reply, meaning it does not fall under the category of 'deceased or unable to consent for other reasons,'" adding, "Due to a lack of personnel and resources, it is difficult to assist adoptees in challenging situations."

On the morning of the 12th, around 11 AM, a rally was held in front of the Child Rights Protection Agency in Jung-gu, Seoul, urging the protection of adoptee rights for Matthieu Sung-Tan, where participants shouted slogans like "After sending children abroad for adoption, you act like you don’t know about parental information." (Reporter: Lee Ah-mi)

The rate of adoptees obtaining information when they request the disclosure of adoption information is less than 20%. According to data submitted to the Democratic Party’s Park Hee-seung by the Ministry of Health and Welfare and the Child Rights Protection Agency, the number of requests for adoption information disclosure by domestic and international adoptees rose from 1,327 in 2021 to 2,717 in 2023, doubling in three years. However, the average disclosure rate of biological parents’ personal information over three years remained at only 16.4%.

Prioritizing Protection of Biological Parent Information Over Adoptee Rights

Article 8 of the UN Convention on the Rights of the Child states that states have an obligation to protect and preserve the identity of the child, including nationality, name, and family relations. Although Korea ratified the convention, the current Special Adoption Act prioritizes the protection of biological parents' personal information over the right of adoptees to know. In contrast, countries like Norway, Denmark, and Sweden guarantee the "right to roots" without requiring separate consent from biological parents for the disclosure of adoption information. The UK, Germany, and Italy, among others, have a principle of disclosure and define reasons for non-disclosure based on a balancing of competing interests.

Experts point out that alongside legislative reform, Korea should take a responsible stance regarding its negative reputation as a "child-exporting country," having sent approximately 200,000 adoptees abroad. In November of last year, the Lawyers for a Democratic Society applied for a constitutional review of the provisions restricting the disclosure of adoption information under the Special Adoption Act. Attorney Kim Sun-hyu from Law Firm Igong, responsible for this case, stated, "It is problematic that the non-disclosure principle is applied in all cases except those where biological parents explicitly consent to the disclosure of information." Lee Kyung, representing the Human Rights Beyond Borders organization, emphasized, "Knowing one's identity, including family and cultural background, is also a human right. Rights that we take for granted have been excluded for adoptees," asserting that "government agencies must take responsibility and establish procedures to ensure the right to know for adoptees."

(Reporter: Lee Ah-mi)

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Paperslip Note:
This Article Is An Example Of The Inherent Issues of “Orphanization”.

It’s well worth noting that this story not only highlights systemic issues with NCRC and Western Governments’ policies regarding birth parent information disclosure, but it also points out the inherent issues with the systemic Orphanization to which Korean Adoptees were routinely subjected in order to more easily process them via proxy adoption.

Even if NCRC made an exception in this Norwegian Adoptee’s case to try to locate the birth mother, the fact that the Korean Adoption Agencies routinely falsified birth parent information for Adoptees makes it nearly impossible in many cases to locate birth parents through a search procedure.

A child is not an empty palimpsest with no history - a child is a product of millennia of history, from which they have been artificially yet often permanently severed through adoption.