Last night I had a fun conversation with some non-scientists on personal genomics. A lot of my conversations on this topic are “inside baseball” with people who know the field (and the minefields) really well. So it’s fun for me to explore the larger social and ethical issues with people who are just beginning to think about them. And they coined a phrase to describe my feelings on something I had seen: gene envy. They were right
We talked at some length about what you can and can’t learn from the “reader’s digest” version of your genome that you get from a SNP scan like 23andMe provides. How SNPs can be informative, but are not the only types of variations that might be important in your genome, and they certainly don’t represent all the SNPs possible. We talked about the kinds of things you can learn from the SNPs right now–silly trait sorts of things like whether you have wet or dry earwax (as if you didn’t know already), as well as some information about potential disease incidence and response to certain medications–but even that data is sometimes preliminary and subject to change still.
That’s all the stuff I expected. One thing I wondered about was if I was going to be affected by knowing about other people’s genes…and how I might react to that. Well, now I know. I haz gene envy. [for my color-blind siblings, I wrote that in green, btw]
I hate to admit it. I want to be better than that. But maybe I lack a gene for that or something…. I should state right off that I’m not mad at anyone personally–nobody has control over what’s in their genes. It’s not about them per se, it’s about my reactions.
I’m not a hugely introspective person, but I have been trying to pay special attention to my responses to the new landscape of personal genomics. We have a front-row seat to this, and a decent copy of the program. So I feel a responsibility to be aware and honest about what my reactions are. And this is one I don’t like in myself. But it’s there.
I’ve downloaded some other people’s genome scans that they made publicly available. I use them to test out some of the software that I run. And if I want to make screen shots of stuff I refuse to reveal my SNPs right now as I don’t feel safe doing so.
One day I was looking around at obesity variations for some project I was working on. I had forgotten that I had my SNPTips tool on. When you have SNPTips on and search the medical literature at PubMed, the abstracts can be a bit of a roller-coaster. You can read about this research, and roll over the SNP IDs and be shown your own variations (or in my case other people’s). It looks like this as you are reading:
Note: that is NOT the paper I was reading nor the SNP and gene I’m referring to; this was just an example image.
So I am reading along the text, and check the genotype of this individual’s SNP. In that case, a result of AA meant that you had the “skinny” version of the gene in that study. It bugged me. I rolled my eyes, and thought of course it’s easy for this person to be thin….sigh. I was jealous.
In another case I was relieved that someone’s genes didn’t carry a variation I have. I saw the results for someone and thought: oh, good, they probably won’t have peanut allergy like I do. I’m glad for them.
One time when reading in the 23andMe discussion boards I found myself looking at the results for people who are probably resistant to HIV. I thought: nice for them. But the ones who didn’t have that–I was sort of shocked to see them telling everyone. I wonder if that’s wise when we know that data scraping is going on at some medical social networking sites. I easily could have written down their results and their names if I had been an insurance investigator. (If you want to check your own data there, search for CCR5 at 23andMe.)
Another “variation” on my response came when the Alzheimer’s alleles were recently released by 23andMe. I saw several people celebrate their alleles. WOOT!! Even before I looked at mine I resented this. Yeah, I think, you lucky dogs: goody for you. Now shut up and stop rubbing it in. Some people are not going to have a good outcome of this.
And I think to myself: it’s easy to be cavalier about the results you get from personal genome scans if you are healthy and have good genes–and stuff that won’t affect your insurability. Or if you live in a place where your health insurance is guaranteed or you are otherwise secure in your insurance. That’s not the case for all of us.
What I’m feeling is a mixture of things. I’m jealous and irritated by other’s “good” genes. I’m relieved in some cases. I’m anxious for my own outcomes in others. Even though I know that what we know today is only part of the story in most cases, and even with “bad” genes there are probably other modifiers or interactions that may mean you can get off scot-free with your alleles. But will insurers want to take a chance on me? I am skeptical that they’ll lean to the liberal side of the interpretations.
I still think we’re likely to see what I called Genorexia Nervosa–where some fraction of people get so wound up about their genes–or their kids’ genes–that they go overboard with how they think they should eat, or exercise, or allow themselves to be exposed to. (There’s probably an OCD sort of gene that influences that….). But I didn’t see the personal envy coming. That’s what happens when you have a front-row seat on a roller-coaster. And that’s exactly why I ended up doing the 23andMe scan–to join the ride, for good and for bad.
I’ll get over it. Although I do think I have a variant of the hold-a-grudge gene. I may mutter things about your skinny genes if I see you in skinny jeans….