23 and Us: The Social Implications of DNA Testing at Minicon 2019
I meant to have this post up back in April, after Minicon 54 happened. My apologies, all! But I am catching back up. And I still haven’t learned to fix audio quality as of yet - it’s still coming along. Soon, I hope!
You can listen to the audio here. Downloadable version available ASAP.
The implications of recreational DNA testing. 23 and Me was used to find at least two serial killers by finding their relatives, and has been used to find birth parents who may not have wanted to be found. How ethically dubious is that? What implications does DNA testing have for the future?
Participants: Sharon Kahn (mod), Bill Thomasson, Justin Grays, Katie Clapham, Shaun Jamison
As a caveat, I am not a life scientist - I am a social scientist. Please keep that in mind as you’re reading/listening to this.
When looking at DNA testing, it is important to understand that your genetic background is not the same thing as your genealogic record. Genealogy is the study of families, family history, lineage, and such - though it does use genetic analysis (who descended from who and so forth), it is the actual story of your ancestors and your history. DNA testing only gives how your DNA matches to those who have had their DNA tested, and even then it is only able to match with the records kept with whatever service is used, and even that is not wholly accurate. DNA testing is not tracing back your heritage - it is not genealogy.
DNA testing advertisements are misleading when describing how accurate it is. The Canadian Broadcasting Corporation reported on how recreational DNA testing is both a science and an art. When the test compares how your DNA matches to others who have had their DNA tested by that service, it is only able to give the “best-guess” result for that service - each service has their own formulas and data sets, and the majority of the genetic databases are from people of European decent. If you look for the fine print in the disclaimer or find the “confidence level” setting on your results (depending on the service), it will show you that the results are more akin to a “best-guess”. While the majority of the people who have been tested come from the United States and are Black, White, or Mixed, getting accurate results for nonwhite populations is very limited due to various reasons - the Say It Loud video on DNA Ancestry discusses this.
I mention that humans are 99.5% the same - what I am referring to is the fact that, though no two humans are genetically identical (not even twins), the typical difference between the genomes of two individuals was estimated at 20 million base pairs (or 0.6% of the total of 3.2 billion base pairs) in 2015. There are only a few hundred or thousand parts of a person’s billions of DNA base pairs.
“And we as people are trying to put these on lines that did not exist 10 years ago, on lines that didn’t exist 100 years ago, on lines that might not exist in another 50 years.” I am referring to the changing socio-political nature of the world and how some people are trying to say that we are from regions that either don’t exist or won’t exist. The world is always changing, either through natural migration, imperialism, internal unrest, or other factors. For example, the Federal Republic of Yugoslavia (1992–2003) became the State Union of Serbia and Montenegro (2003–2006), which then became the Republic of Serbia, Montenegro, and the Republic of Kosovo (depending on who you ask). The Kanem–Bornu Empire (c. 700 - c. 1900) was located in what is now Chad, Nigeria, and Libya. And who is to say what countries will remain in the future? The United Kingdom and Spain are both facing secession movements (Scotland and Catalan), the Maldives are vanishing due to rising sea levels, and countries are being annexed by larger countries (Ukraine by Russia).
“Ask how many countries there are in the world right now - there is no definitive answer.” CGP Grey has an excellent video on this, as well as a further video on Hong Kong & Macau. In short, there is no definitive answer on how many countries there are because sovereignty is always in question somewhere, and the recognition of a country is not always universal. And that does not even mention micronations, which we will not get into here.
I declined to talk about ethnicity in the panel, because that is a whole other panel entirely. A simple answer is that ethnicity is the category of people who can identify with each other based on common language/dialect, history, society, and so forth. It is a shared cultural heritage that can help describe who people are and where they are from. It is not the same as race - race does not have an inherent physical or biological meaning. That’s not to say that race doesn’t currently exist at a concept, as it most certainly does; it just means that it is a social construct and should not be confused with ethnicity.
How accurate is DNA Testing? Yes.
How accurate is DNA Testing with medical stuff? Ask your physician.
How accurate is DNA Testing with finding long-lost cousins and serial killers? Pretty accurate, I think.
“Each of us, at some time in our lives, turns to someone - a father, a brother, a god - and asks ‘Why am I here? What was I meant to be?’” - Commander Spock, Star Trek: The Motion Picture. Also, I got the scene wrong - he isn’t in sickbay at this point; rather, he’s already been discharged from sickbay and is on the bridge. Oops.
DNA Testing can give us a sense of history that we do not have. While it doesn’t actually tell us who we are and where we grew up, it can give us some context about where some of our fore-bearers may have come from. It can give us a small piece of mind that we, as Black people, just don’t have. We lost our names, our ancestors, our languages, and sometimes DNA testing can give us a little bit of background.
The Enterprise episode that I am referring to is “The Forge” (ENT 4x07), and the character who is framed is T’Pau.
I use these two Star Trek references as a lead-in to bring up Henrietta Lacks. DNA Testing companies own your DNA once you submit it for testing, which can have negative consequences. Though Hopkins Medicine has a page where they “honor” Henrietta Lacks, her family didn’t know that her cells were being used until 1975, and the continued use of her cells still highlight concerns about privacy and patient rights. Not enough has been done to correct the wrong done to her and her family; this is something that can become a commonplace issue with recreational DNA testing.
When we are talking about identification, fingerprints, and DNA, I bring up a bombing in France. I had my European nations mixed up - I was referring to the 2004 Madrid Train Bombings and the person who was accused, Brandon Mayfield. While the fingerprinting issue was not the only problem with Mayfield’s case, it was still one of the factors. When I was looking up Mayfield’s name, I discovered that there were other issues that had to do with fingerprinting in what is now called the Shirley McKie Fingerprint Scandal and the New York State Police Troop C Scandal (the latter scandal can also relate to my concerns that I brought up with T’Pau and planted evidence).
When asking about the testing of newborns, Sharon Kahn is referring to fetal ketonuria, a frightening disease. I, on the other hand, attempted to make a joke about the dangers of designer babies by referring to Khan Noonien Singh. It didn’t go as well as I had planned. I said: “We were fortunate to stop Khan Noonien Singh back in 1996, and unfortunately we had to use all of our DY-100s, all one of them, to get him off the planet, and now we can’t go back into space.” It was perhaps a little too esoteric.
I also have created a playlist on YouTube about DNA testing. Please feel free to check it out.
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