Update 15/04/2105: Crowdfunding just went live! If you’d like to donate, go to our experiment.com site!
If you’re a regular reader of this blog, you might have noticed a lack of posts over the last couple of months. This was largely because I’ve been busy setting up a new project with two friends (and former collaborators) of mine: to sequence the genome of Lil Bub, an internet celebrity cat – with the help of crowdfunding. We’ve christened the project the LilBubome, and after many months of preparation we’ve finally launched our blog, our twitter and our facebook page. The crowdfunding will start in 4 days.
1. The science is cool: Lil Bub is not just an internet celebrity cat. First she’s more than cute cat photos and viral youtube videos – she also uses her fame to raise money for pets with special needs. Moreover, she’s got a bunch of fascinating traits: she’s tiny, she has polydactyly (extra toes on all her paws), her lower jaw is very small (which is why you can see her tongue hanging out on most of her pictures), she has no teeth and she has a rare bone defect, diagnosed as osteopetrosis. Each of these traits on their own have been seen before, for example in human patients, but also in some mice that I was studying during my PhD. However, the combination of these traits is unique, so sequencing Lil Bub’s genome might help us decide if she just has a very unusual form of a disease (for example osteopetrosis), or if she’s actually unlucky, and was actually born with multiple rare diseases.
2. Science outreach: engaging the public in science is something I love to do. But sometimes I feel that with traditional science outreach (eg interactive science museums, TED Talks, PopSci events) we are preaching to the choir, because we only reach people who are already interested in science. With the LilBubome we hope to attract a broader audience: people who might not care about science and genetics, but who do care about Lil Bub and what makes her so special. When Angelina Jolie had her breasts and – more recently – her fallopian tubes and ovaries removed, many of my non-scientists friends asked me about the genetic test that prompted her decision. Apparently the number of people getting tested for breast cancer increased by 40% after her 1st op-ed in the New York Times. This has been dubbed the Angelina Jolie effect*. We’re hoping that we can maybe achieve a similar effect (the Bub effect?), inspiring people to learn more about sequencing and the information you can read out of a genome sequence. On our blog and various media channels we want to engage with everyone and anyone directly, answer questions and explain what we’re doing in detail.
3. Venturing into crowdfunding: the science funding landscape is changing. Currently national science budgets are decreasing around the globe. Crowdfunding and donations from the public can clearly make a difference, you need only think of last years #IceBucketChallenge. There’s a lot of debate among scientists how crowdfunding should relate to traditional science funding, but I think there is possibility for peaceful co-existence of the two: It would be difficult to convince any grant-giving organization to fund the LilBubome. After all, if we wanted to study osteopetrosis or polydactyly there are probably more systematic, experimentally tangible approaches. However, that does not mean it’s not an interesting project or that we’re not curious to unlock the genetic secret behind Lil Bub’s special traits. And if other people think the way we do, we hope that they will vote with their feet. In exchange, we’ll share everything we have and everything we do, making our research a public good.
I don’t know if the LilBubome will work out, but I hope it will. Please donate and/or follow us on one of our channels if you’re as curious as we are (and yes, this is shameless self-promotion)!
*Some have criticized that the Jolie effect was superficial (eg here), with many women seeing their doctors to get tested, without actually understanding (or trying to understand) the science behind genetic testing for breast cancer. We hope the Bub effect (if it does happen) will be different, hence our efforts to explain the science behind the project in detail.