09 October 2017
ByAppeared in BioNews 921
Naked Genetics, 14 September 2017
Presented by Dr Kat Arney
'Would you donate your genome?'
Straight to the point, the introduction immediately grabbed my attention. Genome donation wasn't something I had even considered before listening to this podcast, so I was very curious to learn more.
Professor Colin Smith at the University of Brighton, UK, was introduced as one of the brave souls who had donated his genome. My (rather naïve) initial expectation was that the whole process would be pretty similar to blood donation. But then came the revelation that Professor Smith had actually donated his genome to be published freely. Approximately 6.4 billion base pairs, sequenced and published online. Available for all and sundry to see.
Cue alarm bells. In this social media-heavy world, I am reluctant to even share whether I've munched on some toast, let alone reveal the 'the whole recipe book' of me to the world.
'This is the kind of thing that most people might feel a little bit nervous about, ' said Dr Kat Arney, the presenter of this Naked Genetics podcast, 'Exposing the contents of your genes'. Quite an understatement. Less than a minute in, I was already adamant that I would not be donating my genome.
But being the reasonable individual that I am (cough), I decided to keep listening and see if the subsequent chat could convince me otherwise.
The plot further thickens as Professor Smith admits that he has included his genome report on his personal website and it lists 'all of the notable features of [his] genome and [his] health risks, and potential health benefits.' I was shaking my head, incredulous, by this point.
Professor Smith attempted to justify what I perceived to be pure recklessness by saying, '… if the data is freely available and not behind a pay wall or not kept anonymous, there's going to be a lot more benefit to society'. Ah, societal benefit. That old chestnut.
But before I could even mull over this potential upside, Professor Smith identifies something unsettling that I had foolishly overlooked: 'The notion that you can keep genomic data anonymous is really probably not true, even though people are told that their genomic data would be anonymous. '
And he's right. Your genome is identifiably you. You will never be anonymous if you donate your genome to be sequenced and recorded. It's definitely different to blood donation.
The conversation turned to the ways in which you can actually donate your genome, and this piqued my interest further. With the Personal Genome Project UK, you have to donate your genome under 'open consent'. Donors have to pass an exam to show that they understand the basic principles of genetics and the risks involved with genome donation. The company provides a rather sizeable document that details the notoriously tricky concepts of informed consent and genetics along with data handling (it's actually quite informative; I read the whole thing because I was so intrigued).
'…your genome on its own doesn't really mean much. It's only when you compare it with other genomes,' states Professor Smith. That is true, but my genome is my own and it's pretty important to me, so I do feel protective over it.
While this part of the podcast was really engaging, Professor Smith's zeal for genome donation rendered it slightly one-sided. There could have been a greater exploration of the wider risks and benefits to help people to come to an educated answer to the titular question.
After frantically Googling 'genome donation' for a while, I moved onto the next section of interest in this podcast, 'Ethics and Gene Editing'.
Professor Jackie Leach Scully of Newcastle University begins by defining human genome editing. I was torn about this introduction; it did mean that genome editing isn't misinterpreted but it made for relatively uninteresting listening.
The ethics of genome editing is an inherently broad subject that can sometimes use rather dull conventional examples, but I thought Professor Leach Scully spiced up the chat sufficiently with talk about 'Frankenstein's monsters and mutant societies'.
She proceeds to make an important point in that science-fiction scenarios can seem so unlikely and far-fetched that we may simply shrug them off. But 'it's unwise to say these things won't happen and we can't often anticipate what some kind of really transformative intervention might come along.' This resonated with me as I definitely enjoy seeing evil, genetically modified super-humans on the rampage in movies, but I am decidedly less overjoyed at the prospect of them running riot in the real world. It's convinced me to think much harder about ethics in different contexts, which is a nice take-away from this podcast.
Unfortunately, the conversation becomes a little dry after this point. Professor Leach Scully and Dr Arney examine the debate on embryo research that began with the Warnock report, but disappointingly offer no new insights into it.
The conversation is steered towards the creation of a 'homogenous perfect human'. Professor Leach Scully's initial response is somewhat confusing, but I felt that she does finally get to the crux of it with this: 'If we think about that idea about perfect beauty, about the perfect kind of person, the desirable kind of person, that's changed such a lot over history – even recorded history.' It is not a new perspective by any means, but it's a very reasonable point to emphasise.
'Ethics and Gene Editing', for the most part, provides a fair and comprehensive discussion. It's just unexciting. It failed to trigger a desire in me to research the topics further, unlike the section on genome donation.
But overall, these two sections of the Naked Genetics podcast provided a lot of food for thought for me; surely, that makes them worth a listen.