[Most important update: a big old full statement and apology from the PGP here]
[Update: someone from PGP has commented to point out that this is PGP UK only and the international ones are run separately]

Last night the Personal Genome Project (PGP UK) sent an email out to everyone who’d registered an interest in taking part. 2 hours later one volunteer replied to the PGP UK with a query about the booking form. Unfortunately for the UCL-administered mailing list, the thousands of people that received the first email also received the second one.

6 minutes later someone without a hint of irony emailed:

“Shit. Does this mean that everyone who was emailed that initial Personal Genome Project email will get copied into all ‘Reply All’ responses because they’re a part of the pgp-uk-list distribution? This is going to be annoying”

We all knew what was coming, we were on an inexorable slide toward the predictable. Just before it got underway one wag sent an email pointing out that, since this was a project asking for our genetic information:

“I hope none of you have privacy concerns :-D”

Before the inevitable, the perennial and oh-so-futile:

please remove me

 

As any self respecting student of Imperial College knows, such a hilariously stupid email to a list of tens of thousands of people can result in only one thing:   Within minutes: email inbox

It quickly went wild. Lots of people immediately saw the funny side of things, with an early contributor appreciating how the evening would turn out early on:

“Bro’s,  think of the HYPE. we’ve got an email and a dream. Random man emailed us, working some hope. Guys, let’s get real. HE’S GOT A HOPE AND A DREAM. THE HYPE TRAIN IS REAL!!!”

Some people used it for important public service announcements

“Just been to see Godzilla. Don’t bother folks. “

My favourite was a guy sent a “YoU MuSt sEnD tHiS EmAiL To 5 pEoPlE oR eLsE yOu WiLl dIe” chain email that he must’ve been saving from a 00’s hotmail account just for this occasion.

 

Now unfortunately for people who don’t read things before they start adding comments, the email addresses of the individuals on the list weren’t compromised.

 

This was made apparent by the third guy who emailed the whole group who pointed out that provided you didn’t email the whole group, your email would be safe and sound. This made subsequent complaint emails such as this one all the funnier.

 

rcyahoo

 

M’kay so you’re annoyed at a breach of data so you publicly put your email address out on this list despite repeated emails telling you that your email was safe, also you let us know what mail client you’re using and also YOU USE YAHOO FOR CRYING OUT LOUD! Don’t bring your dear mother into this, you’re pretty terrible yourself.

 

Anyway, this being late on a Saturday evening and everyone sort of getting excited from their phones buzzing constantly in their pockets, this started to happen: sexreq which was popular: genome experiments (these were all guys btw, and some of them had like “[husband]and[wife]@family.com emails which was lol)

 

There was also a very popular “what’s your favourite movie” thread that opened up, which was dominated by Empire Strikes Back, Starship Troopers, Groundhog Day and a discussion as to whether the film or the book of Perfume was better.

 

Unfortunately some fascist had to put a bit of a downer on the thread nick   Obviously it’s problematic and worrying that a person willing to make a jokes along these lines wants to get involved in genetics research. I’ve said it before and I’ll say it again, genome science really needs to strive to avoid neo-eugenics taking over and people like this should be excluded.

 

The thread bounced around for a bit longer, in all 141 emails were sent in 2 hours around midnight before the list got shut down towards 3 am by some poor, poor sleep deprived sysadmin somewhere at UCL. I’ll update if/when we get an apology.  UPDATE: Here is a link to their apology and explianation as to what happened

 

This is obviously severely problematic for the Personal Genome Project because as many people have been saying it’s going to be difficult to guarantee the complete anonymity of your genome if you go along with the project. Now most people were aware of this when they signed up (and PGP UK went to great lengths to tell you this when you did sign up) but frankly childish errors on email-list privileges look like research-subject privacy is the lowest  possible priority for the project. Lots of people decided to tell the email list their intention to pull out the project now and one grumpy old fart started sounding off about lawyers.

 

The effectiveness of PGP’s research relies on having a tens of thousands of subjects, and now most of the ones they’ve already recruited are pissed off and distrustful.

 

I was delighted to see some of my friends jump into the email-fray, and to conclude I’ll leave you with the wise words of my dear friend Rob, who’s currently writing up his PhD thesis and thus very bored: rob

 

Advertisements

4 thoughts on “Personal Genome Project Party

  1. This is hilarious (except for the eugenics, which sucks), thank you for the write-up! Wow, whole conversations… that’s… kind of awesome. I missed the full extent of this as I’m not in the PGP UK list.

    I’d like to clarify that the PGP sites are separately managed and largely autonomous – this is an incident specific to the PGP UK study/site. Neither PGP Harvard, PGP Canada, nor PersonalGenomes.org (the coordinating organization) have any access to the PGP UK private data. (And vice versa.) PersonalGenomes.org only had general knowledge about their email plans (i.e. “that they were planning to email people”), so it was an unhappy surprise for me to start getting furious emails sent to website@personalgenomes.org Saturday evening. (i.e. sent to the coordinating organization.)

    I hope PGP UK updates folks soon. If you could edit the post a bit to specify the incident was PGP UK that would be nice of you. 🙂

  2. I’m the “fascist”, thanks for publishing my name and email address. I’m sorry you didn’t enjoy my dark humour. The sad predictability of the email storm compelled me to invoke Godwin’s law against myself with all speed. This is called ‘irony’, which may be alien to your culture.

    I’m afraid eugenics needs to rear its ugly head in any discussion of PGP. To pass the enrolment exam you have to show you understand that you risk being cloned, sacked or refused health insurance. And that you might discover that you are not related to your father or siblings. And that you could be wrongly accused of murder or rape. Once all of that has sunk in it becomes obvious that eugenics has to be on the very long list of ways in which the data might one day be abused.

    Have you taken the exam yet? I found it tricky, time-consuming and thought-provoking. I suspect the people who can’t comprehend ‘reply all’ or who whine about a little spam will struggle to pass, or think twice about the risks, or both. So I doubt this fuss is going to make a dent in the number of participants.

    1. “thanks for publishing my name and email address”
      —You’re welcome.

      “[second paragraph]”
      — so the PGP takes place in the wider framework of rapid advancements in genetics and since Nina Jabloski’s talk about “neo-racism” at the AAAS conference in Chicago earlier this year (few write ups here, http://www.news.com.au/technology/science/experts-concerned-that-advances-in-genetic-sequencing-are-giving-rise-to-neoracism/story-fn5fsgyc-1226828291896 and here http://medicalxpress.com/news/2014-02-racism-science.html) I’ve been acutely aware of her concerns.

      “Dark Humour”
      –The bad-joke-teller’s weakest defense.

      “Doubt this fuss will make a dent”
      — I think you’re right, it probably wont because as you rightly point out: most people will realise that an office intern not clicking a checkbox on an email form is not the same as the ethical implications of PGP UK’s tests which they were happy to sign up to in the first place. I have filled out the applications (admittedly after I wrote this blog post which I did for my own amusement on sunday morning as I read the exchange) and who knows if we both get through and meet at a research centre some day I’ll lend you a good joke-book or two.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s