23andMe. And symphathy
Like many who once decided to surrender their precious and unique genetic information, I recently requested 23andMe to delete my data and account after they announced bankruptcy. I know it's probably too late, but I may as well delete my information while I can still try.
I was a teenager when I requested the DNA test as a holiday gift after having noticed my adoptive mother at the computer, working on what seemed like a genealogy project. She was trying to trace herself back to European royalty.
I wanted to know about myself, too, given that I knew only my birth country and city. Not much. For some reason my parents who have long dismissed my personal history ordered the 23andMe test, and I was on my way. Even though I've emphasized how important privacy is to me, that has not always been the case. If someone had asked back then, I would not have had the slightest clue what digital privacy meant. (This should really be taught from a younger age).
I did not expect to find any biological family members through the service, as 23andMe isn't popular in most countries outside of the United States. Still, I delighted in the ancestry reports. It was like a confirmation that I am a real person. Even my roots could be traced.
Ultimately, it wasn't worth it. I later used a private investigator to eventually make contact with my biological family. I learned more information from actually talking to them than dissecting my 23andMe report. Though to be fair, the ancestry results were more detailed than I expected.
Still, until last week I left everything alone on 23andMe's website even though I had already downloaded my raw genome data.
It isn't like I have been naïve this whole time. I know the risks of DNA testing services, and it's not just the health and life insurance companies looking to discriminate against you. It can actually be much bigger than that. This is also about biosecurity. This is about the Chinese biotech companies getting their hands on the DNA of patients worldwide to be stored in China's government-funded gene databases. But this shouldn't come as a surprise given China's forced collection of biometric data from Uyghurs. This is about a government or group potentially exploiting the nature of the human genome to target particular groups, potentially minorities or those harboring a rare disease.
I don't mean to terrify anyone who gave away their genetic information. After all, I'm in the same camp.
You might think the writing was and is on the wall, and I agree with you. It isn't that I'm not angry about it either. But right now I'm mostly feeling sorry for those who genuinely had a use for these services beyond wanting to confirm that they are 24% Italian (not trying to make you feel bad if that's you. that's cool, too).
This is for the American domestic adoptees whose original birth certificates have been held hostage from them by their state of residence for no good reason. Can you imagine needing a court order to access the most fundamental facts about your life? It's no wonder these adoptees would try their luck at DNA testing services to find out who their relatives are and to get answers about their circumstances and medical histories. Plus, finding biological family via 23andMe is more likely for these adoptees.
It's not fair that people have to choose between having their most precious information sold and potentially remaining in the dark for life, unable to enjoy a basic human right.
For me, deleting my 23andMe felt like deleting the first chapter on my path toward reclaiming my identity, even though it was by far the least helpful part of it all. I'm not happy that I did it, but I didn't know any better. It's bittersweet. It's a reminder of how biology can be used for both good and bad. I'm afraid of how bad the bad can and will become.