A Privacy Impact Assessment Before Blogging About My 23andMe Genotyping Results

In July, I submitted a saliva sample for genotyping with 23andMe. I saw an opportunity to learn a lot about myself to improve my life, and motivation to finally learn genetics. I also saw getting genotyped as a life changing event of a rare kind. It offered a peek into the future with odds of potential life changing events like on set of major diseases, a look into the past through ancestry information, and a lot of things to deal with in the present like drug profiles. Besides science, there would also be opportunities to write about life, spirituality, humour and all kinds of issues from economics to politics. I’d also have to write it simply enough that most people could understand as the average adult reading level is only about grade nine or ten.

Additionally, this journey’s documentation was only going to be meaningful if I were honest and comprehensive in my sharing of results and personal reactions. In today’s world where information, especially personal information, is so valuable and/or damning, I am very aware that putting core information about myself online isn’t exactly a smart thing to do. This information could be used against me in any number of ways, with varying degrees of risks and impact. However, I am very a calculated risk taker, and I’ve been thinking about these risks for the past month awaiting my results. Well, I finally got my results late yesterday. I was confident I would be going ahead with blogging my journey, but wanted one final deliberation. This was how it went.

Mostly Privacy

Most of the issues I contemplated were related to privacy, both what I would write about online and the actual raw data generated by 23andMe. The former probably wouldn’t be valuable to many except people who are curious, because it wouldn’t be in all the scientific details needed to be useful. That would be the latter that could be obtained through hacking, being sold, or otherwise, as held by 23andMe. That was why I called this post a “privacy impact assessment”. Basically, it was mostly about who might get hold of my information, what they might do with it, what would be the consequences be and could I handle them? If yes, identify how and move on. For scenarios I could not imagine, given the effort I had put in, would I feel confident I could handle whatever they might be? If not, then think more. If so, then let’s go. I have this approach from how I deal with risks in life, which I generally view as one big risk management exercise.

What if 23andMe’s Data Got Hacked?

This was something 23andMe had on their waiver. True, but this is no little start up. Its CEO, Anne Wojcicki, is the wife of Google’s Sergei Bryn. I’m sure she’s got access to great advice on protection of data. Even if 23andMe’s data did get compromised, I don’t deem myself that important to be of interest to whoever would be taking or leaking that information. Surely among the million people 23andMe eventually hopes to have, there are far more interesting genetic specimen. The large sampling size they want is to get large sample sizes for many demographics. That is, you can’t draw a statistically sound conclusion if there were two samples. You’d like a thousand. If so, then any demographic I might be in, like Asian males in some 5 year age category who have attained some education level within some size range, there’d eventually be about a thousand others like me.

What if Pharmaceuticals Got My Data?

No problem. I’m betting there are a lot of people far less healthy than me that BigPhama would want to go after them first. It’s kind of like traveling in the woods with a friend you can run faster than should you meet a bear. The bear would get to your friend first. Or camping with a friend whose blood you know mosquitoes favour. That’s NOT how I treat friends, of course. Just a funny example to illustrate my point.

What if Health Insurers Got My Data?

I live in Canada, where we have “universal” health care. Were I living in a country with private health care, I would seriously hesitate blogging about this experience. That’s because I’d be giving odds, or just hints, of getting conditions that could drive up the cost of my health care if the insurer found out. However, I don’t have health care beyond what the system and what my government job afford me. There is no additional impact on me for health insurers getting their hands on my genetic health information.

By the way, Canada pays for its universal health care through higher taxes than countries like America. The Americans can complain all they want of our high Canadian taxes, but it’s worth it. All the studies on tax, universal healthcare and population health, show that countries with higher taxes to cover for universal health care have people who are healthier. That’s not a socialist idea as conservatives would tell you because we’ve got all the income inequality problems America has. They’re just smaller as we’re generally not as selfish to try to get ahead of others.

Required Disclosure by Law?

In some countries, if you learn you are predisposed or at higher than average risk of a health condition, you have to report it. I’ve only heard, not done the research, so I don’t know which one. The possibility it could happen to me is the risk for me to consider here. Fortunately, I can discard it easily. Canada is very protective when it comes to disclosure of personal information, and especially personal health information. I also have no plans of moving out of Canada. Love may force me one day, but if she comes from a country with bad health care coverage, that’s going to seriously count against her! Not kidding!

What if Google Got My Data?

Of course, with 23andMe’s loose association to Google, there’s a chance my information would eventually become part of Google’s information archives. That’s a cynical view as 23andMe vowed to protect their data. Even if Google got my data, though, that would be fine by me. There are more interesting genetic specimens and less healthy people than me as mentioned before. I think so little of my genetic data being of value to Google that I would bet what Google has of my browsing is far more valuable to them, just from ad money they get from ones shown when I surf. Besides, I highly doubt Google even cares that I exist as a unique entity, just another one they market to, crunch info about and such.

Privacy in Real Life and from Internet Searches

All that stuff people generally mentioned regarding privacy risks were true, but relatively insignificant to me. Privacy in real life was actually my biggest concern. You see, I am single. A lot of people, these days, search the Internet about someone they date, or are thinking about dating. In doing this, I am laying out my genetic profile for potential dates to scour, some of which she may not understand and may misinterpret. For example, I would bet nobody is going to have an average or less than average likelihood of getting every single medium or serious medical condition tested. If she found my increased risks for some medical condition, would she realize that? Would she also be blind to what the next guy might be prone to in not knowing anything about his risks? That is, she might prefer to date him not knowing he has an above average risk for some disease, rather than me who she definitely knows has higher risks for certain things. I write addressing the female because I am male interested in women, but I mean it in the same way for any gender.

This risk of being scrutinized by someone who touches my life directly was my biggest worry about privacy, not the other big, aggregate, distant stuff that might make the news like if 23andMe’s database was hacked. I had to think hard about mitigating this risk on a personal level, and what I concluded was this. First, if she were going to be that hasty to judge and put it above everything else she might know about me, or not think about how other guys would have their own risks, then that’s not likely the woman I’m looking for. I highly value intelligence, rationale, patience and other qualities preventing such hasty decision making in a life partner. That action would equate to a failure to show sufficient amounts I’d want in a life partner. Second, I would bet a lot of money most guys out there don’t have as healthy a genetic profile as mine, nor the current state of health. I’ve got a great head start now, and a beautiful prospect related to my genotype profile. I’m not going to be a health burden to anybody any time soon, and not likely any sooner than they might be to me. But should she ask and gave me a chance to discuss what she might find here, I can explain it in a few minutes or paragraphs like here. I’ve already done the same for the immediately family and their concerns. Just as fleeting as I might able to discard someone as a suitable partner for a few actions regarding finding my genotype blogging, in those few minutes or paragraphs, she could make a huge good impression on me just for asking. 🙂

Potential Employer Concerns?

I’m not worried about employers finding out about me via my writings here. I don’t plan to be employed at anything where genetics would become a determining factor in me getting a job. I do plan on making some of the writings for this genotyping adventure to be good examples of my writing, thinking and personality. I plan to be proud of it so if it’s not to an employer’s liking, I’ll just find another job. I’ve got lots of skills, experience and self-confidence. Same thing applies to advancement. I consider what I’ll be showing here to be assets, not weaknesses or liabilities. All that said, I do have to admit, having my government job definitely helped ease my concerns about job stability despite what I might show here about myself, attitudes and thinking.

All’s Good with Privacy Concerns

From what I had written to this point regarding privacy concerns, scenarios and mitigation, I am very confident I could handle other situations I did not think about. I am confident the same argument about my relative good health and insignificance among the population tested could rationalize how I’d be able to handle those situations not yet analyzed. Feel free to drop me scenarios to help me further, though!

Concerns Beyond Privacy

Beyond privacy, there was the risk of getting bad news from the genotyping results. That was actually my biggest fear in doing the genotyping since I could easily abandon the blogging idea any time. What if I were to find out I was at high risk for cancer or some other nasty diseases? It was a troubling thought, but one rather easy for me to handle once I thought about it. First, I would not let it get to me. It is not destiny as 23andMe does well to point out. It’s a probability. Second, ironically, I would prepare for what might await me as if I were destined to get it, in order to do as much as I can to mitigate it. Maybe change diet a bit, or be more vigilant about sunscreen, even possibly getting out to enjoy life a bit more if there were a realistic chance I might not have as much time left as I would have liked. How could that preparation be bad for me? That’s what I took up all of this for, to improve my life! 23andMe does allow you the option not to look at your health profile, and some very specific reports on certain diseases within require additional consent, if you’ve not taken the genotyping and were wondering.

Deal Closed

With all those issues carefully thought through and soundly handled, I have no reservations about blogging my genotyping journey without constraint to share details. Perhaps only for discussion regarding science since I’m not attempting to be a genetics expert here. I hope you will join me in reading, and possibly giving feedback to my writings. Maybe it’ll even inspire you in some little way every now and then, or you can inspire me! 🙂

Keeping Up with Genotyping Posts

  • You can subscribe to this blog via the bottom left menu. This blog will have far more than just this genotyping content, though. I will be up to all kinds of things this fall, from sewing to running to cosplay to corsetry to choir and beyond.
  • If you just want the genotyping content, you can always just visit this blog every now and then, and click on Genotyping at the top menu.
  • You could also bookmark the link https://digitalcitizen.ca/category/genetics-genotyping/ and come back to check once in a while.

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