DNA Testing: The Risks vs Rewards

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Between Black Friday and Cyber Monday, 1.5 Million DNA kits were sold online by AncestryDNA, a US-based DNA testing company. The sudden increase for DNA testing may be due to YouTube and Facebook’s large cache of emotional stories about the outcomes of DNA testing. Two YouTube video’s that stick out for me are: “DNA Journey” series by Momondo where individuals are shocked to learn they have DNA from groups they did not know about; and History Channel’s video where a man repeatedly checks his mailbox for test results – he learns of a small amount of Viking genes and celebrates this heritage with his daughters, by dressing up in traditional Viking garb on his front lawn.

The videos were emotional and popular with each getting around 4 million reviews. I didn’t need these stories to motivate me to get a DNA test. I already had a degree in biology and was scouring the internet for reasonably priced DNA tests and was one of the first individuals to test with 23&Me. The motivator for me was curiosity. I was hoping to gain some detailed information about myself that I didn’t know already. Along with most adoptees, I took a DNA test for numerous reasons:

  • Health: Some adoptees are worried about their health and have nothing to determine their risk. DNA tests can provide extensive health related information.
  • Curious: Many adoptees have a curiosity of who they are and would like to know more about their genetic make-up.
  • Search: Numerous adoptees want to search for their families. Several databanks exist that allow individuals to share their DNA data to be cross-matched for relatives
  • Validate: Some individuals may have found people potentially related to them. The surest way to determine if individuals are related is by taking a DNA test to confirm.

My Background

For me it’s frustrating to listen to people who have little to no understanding of basic science, or the courtesy to contact experts within the field, before they make judgment about DNA testing. Many people can be skeptical and ignorant about the science behind the new research and technologies. I dealt with this while woPicture1rking at United States Army Medical Research Unit Kenya (USAMRU-K) while assigned to the U.S. Embassy in Kenya, Africa. Our labs employed more than 600 doctors, research scientists, and nurses to work on cutting-edge research to combat Malaria, HIV and Leishmaniosis.

I began DNA testing in Europe with a non-profit organisation (NPO) 325kamra. Their mission was to give away free DNA test kits (minus a small shipping and administrative fee) to Korean adoptees who lived outside the United States and to relinquishing parents. The aim was to facilitate finding biological relatedness. A false rumor being spread was 325kamra was profiting by exchanging genetic information to laboratories.

DNA Testing Fears

Something can always go wrong in life and people have fears about DNA that are no different to anything else in life. In my experience, this sector is highly regulated and followed by numerous watchdogs across the globe. In the United States the U.S. House of Representatives foresaw issues and passed the Genetic Information Nondiscrimination Act (GINA) in 2008. The law prohibits the use of genetic information for use by health insurance companies and for employment. However, I still read newspaper articles that use scare tactics and sensationalism to induce fear. A recent article that circulates on Facebook states that the police can use your DNA test against you in court. I find this highly unlikely, I make this decision with more than 20 years of experience working in hospitals as a CFO, nurse and as a paramedic. The reasons why I think this is impossible hinges on confirming the test on its accuracy. The sample could have been contaminated, individuals may have switched the vials, aliases could be used and most importantly, there is no chaDNA Testing Europein of custody that shows that the DNA was accounted for during collection, through shipment and as it arrived to get tested inside the labs. Furthermore, there is also an issue of variance within the industry.

Companies run different algorithms to determine their results. Each laboratory has their own standards and policies – all of this produces variance. Like any standard warranty, evidence can be obtained to be used against someone suspected of committing a crime. However, it’s highly unlikely that the police will ever request or use DNA samples from a DNA testing company. Furthermore, it is far easier to obtain a search warrant to obtain DNA specimens from the individual or from their home. We all leave traces of our DNA everywhere as we touch the surfaces of things. The traces of saliva left on the toothbrush, traces of spit on the forks left in our dirty dish piles and the hair follicles that land on the bathroom floor from brushing our hair.

Test Result Differences

There has been some criticism by people because they found differences in their DNA results when taking multiple tests from competing companies, or when variances are found testing against a close relative. People need to remember that DNA testing is relatively new and companies incorporate findings at different rates. I saw this in my own DNA test. When I first read my DNA composition in 2007, 23&Me stated I was 100% Korean. Today, when I read through the report, the company updated its haplogroup information and now it has identified 4 distinctive ethnicities within my DNA. These are not necessarily mistakes on the part of a DNA testing company.

Research Lab in Kenya AfricaSome of the reasons we get different test results from different labs include:

  • Differences Between Siblings: It is true that children receive 50% of their genetic inheritance from their mother and the other 50% from their father. However, the segments shared by the parents are random. This is why one child is taller, had darker hair or is smarter than other siblings from the same parents. When siblings take a DNA test, the results will be different because of the random distribution of genes. DNA companies predict a relationship between two people in part by looking at the amount of DNA they share and it’s measured in a unit called centimorgans (cM). Closer relationships will have share more centimorgans of DNA with you.
  • Mistaken Identity: I have been asked by people on numerous occasions to do a DNA test on someone because they found someone who looks eerily similar to them or they found someone who had similar traits. I recommend viewing the YouTube video on DNA testing on a set of doppelgangers where it was found the individuals had no genetic relationships at all, despite the fact they looked identical!
  •  But My Family Said: You may be one of the lucky few who have already found your biological parents and were told you were half Italian or 100% Korean but your DNA test shows  you are way less than expected. Families often hide embarrassing facts, trace only one side of the family tree, or simply do not know the truth – they only know of the more recent events. Genetic tests can trace over 1,000 years and can show you within a range of certainty of when the genes were passed.
  • Just for Men: The three big DNA testing companies in the United States (FTDNA, AncestryDNA, and 23&Me) use autosomal testing and both men and women are tested the same way. There is another test called a Y-chromosome, also known as a mitochondrial DNA test that reflects the direct father-to-son relationship. The mitochondrial testing can look deeper into your family tree and get results dating 10,000-50,000 years, compared to traditional testing that focuses on a few hundred to a thousand years.

Norway testing

In closing, individuals need to realize that the processes used to do DNA testing is different amongst companies. One company looks specifically at programmed locations for specific values, other companies offer a full scan of all 16,569 locations during a full mitochondrial testing. Each year, new haplogroups are found each year and the results change over time as more people participate in DNA testing.

The science behind DNA testing technology is advancing rapidly and surpassing Moore’s Law in driving down the costs and increasing the speed of testing. It will only get better over time. I recommend people keep an open mind about DNA testing. Hopefully the results will provide some answers to previously unanswered questions .. and who knows, you may find a cousin or two, maybe even 1,000 of them!

Question: Have you taken a DNA test and were you surprised by the results? Would you recommend taking a DNA test and why?

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For additional Reading:

DNA testing between the big 3: http://thednageek.com/the-pros-and-cons-of-the-main-autosomal-dna-testing-companies/
DNA Sales record: https://www.wired.com/story/ancestrys-genetic-testing-kits-are-heading-for-your-stocking-this-year/
325KAMRA: http://www.325kamra.org
USAMRU-K: https://www.youtube.com/watch?v=5U7n8KDz7HA
DNA testing facts: https://www.youtube.com/watch?v=UhQoYYHcHRE
Ancestry DNA ethnicity estimate: https://www.youtube.com/watch?v=MjZiT6YDbgI
Doppelganger DNA Test: https://www.youtube.com/watch?v=_370DhsvQGI
History Channel: https://www.facebook.com/HISTORY/videos/1398297886941748/
DNA Journey: https://www.youtube.com/watch?v=Fw7FhU-G1_Q


Colombian Intercountry Adoptee Anthology

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Abby

I connected with Abby Forero-Hilty from a Colombian intercountry adoptee group on FaceBook. She has worked hard to put together a new anthology that shares 18 Colombian intercountry adoptee experiences. Most participants were raised in the USA except 4 who were raised in Europe (Germany, UK, Belgium & Switzerland).  The anthology is titled Decoding Our Origins: The Lived Experiences Of Colombian Adoptees and it’s proceeds will be given to Colombian intercountry adoptees and their original families who struggle to afford DNA testing kits.

I read the book in two sittings. I loved the mix of literary styles .. prose, lyrics, narrative, photographs – it made for an interesting read! It is deeply emotional and contains very moving personal accounts of the struggles and achievements of those who contributed. It covers some profoundly sad experiences and includes many stories of reunion and beyond.

I felt very connected reading Decoding our Origins because it reflected much of what I’ve experienced and learnt from intercountry adoptee’s worldwide covering a variety of countries of origin. The issues and experiences reflect what I’ve always termed the “kaleidoscope of intercountry adoption journeys”.

One aspect that stood out was these experiences voiced by the USA based Colombian intercountry adoptees, appear to be largely the result of the USA’s privatised system of adoption. It has only been since 2008 that the USA became a signatory of The Hague Convention for Intercountry Adoption.  Prior to becoming a signatory, independent adoption agencies facilitated intercountry adoptions for prospective parents. We read the results from these intercountry adoptees themselves, now grown up, with a voice of their own. They share the consequences of growing up with ill prepared parents due to a lack of mandatory and standardised education, lack of standardised screening, and a lack of education to adoption agencies from the kaleidoscope of intercountry adoptee experiences.

Decoding our Origins, being largely the voices of USA based Colombian intercountry adoptees, is a reflection on the USA who is the largest receiving country in the world  … and a sender of it’s own children via intercountry adoption! Will the USA and countries in Europe work harder to listen to and include a wide range of voices from the adult intercountry adoptee community to improve standards and processes in intercountry adoptions to achieve better long term outcomes for the child (who inevitably grows up to become an adult)? Only time will tell.

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Looking Truth in the Eye by Renée Sadhana (one of the anthology contributors)

We now see enmasse, generations of intercountry adoptees like these Colombians in the USA and around Europe, who have suffered in their adoptions. Suffered rehoming, trafficking, deportation, false documentation; who are searching for their true identities and place of belonging, who struggle to have their emotional journey validated, and essentially for whom they have been given inadequate pre & post adoption supports. Our receiving countries have an ethical obligation to ensure if they are going to continue to bring in children via intercountry adoption each year, they lift their standards to ensure these children have positive outcomes in the future and not continue to suffer as many in this Colombian anthology share.

Some suggestions to lift standards would be to provide fully funded resources specific to intercountry adoption, like:

  • professionally trained Searching, Mediation & Reunification services
  • DNA Testing from reputable laboratories
  • professionally trained Psychological Counseling
  • Language Translation Services
    (Source of these suggestions comes from ICAV’s Search & Reunion Perspective Paper)

Let’s not forget the role of the sending country, Colombia. One has to question why our sending countries including Colombia, continues to send so many of its children out.  Why, after so many generations, does Colombia fail to create and implement family preservation systems especially given such a high proportion of these Colombian adoptees successfully reunite and find their families intact? Why also has there been such a long history of irregularities in identity documentation from orphanages and hospitals in sending countries? Decoding our Origins exemplifies the long term consequences for intercountry adoptees who are sent away to another country under such practices. Our governments becoming a signatory of The Hague for Intercountry Adoption does little to improve these aspects of intercountry adoption for us intercountry adoptees!

Decoding Our Origins: The Lived Experiences Of Colombian Adoptees is now available from their website.