Whose Genome Is It Anyway?
It’s yours, apparently.
Fairly intuitive, you might say. It’s all my DNA, mapped out. Why should it belong to anyone but me?
But with genome mapping projects really gathering speed now, many people are beginning to worry about a new scale of identity theft.
This was the topic touched upon last night at the Royal Institution of Great Britain: why map the human genome? Who owns this genetic information? What are the risks?
Guest curator Mark Henderson facilitated the discussion, between Dr Daniel MacArthur, Dr Caroline Wright and Professor Sir Mark Walport (director of the Wellcome Trust). The speakers held quite different stances on how genetics should and shouldn’t be handled, which naturally made for a far more interesting discussion (no one likes a discussion that consists of a lot of “yes, I agree”. Far better is the: “I’m just going to stop you there…”)
We began with Dr MacArthur, outlining the new Genomes Unzipped program. This is an online program where MacArthur and 11 colleagues have publicly released parts of their sequenced genomes online, for all of us to peruse. Not just that, but that show them in a variety of “easy to read” formats, with some explanations of what we’re looking at. He and the team are trying to help inform the public, and help them to analyse their own data without having to disclose it to anyone else. MacArthur states that he and his colleagues are doing this to open up the discussion about genetics: he argues that at the moment, everyone has a very anxious attitude towards genetic information, but that this fear is without reason.
In fact, he argues that genetic information is very useful – it can tell us a lot about ourselves, about our history, and about the history of the entire species. Genetic tests are now available directly to consumers (in the form of such companies as 23&me, GeneTrack and many others), which means we could receive “personalised medicine” – just by looking at our genetic sequence, we can tell what drugs may be effective for us. This technique is already being used in some cancer treatments.
Dr Wright then backed up his claims (she too is a part of the Genomes Unzipped project), and tried to answer the question “how will it change clinical practice?”. She argued that some sweeping claims have been made in the past about the future of genomics – that, once perfected, everyone will have their genome sequenced at birth, and that this will replace the current infant screening process for illness and defect. But Wright says the genome should be used more selectively – after all, even genes cannot predict the future with certainty, as environment plays a huge role as to how we will develop. Genome sequencing should be used for clinical testing rather than a screening process. Screening looks at everyone, even relatively “healthy” people, whereas clinical testing looks at people who may be at risk from genetically inherited diseases such as cancer – by mapping genes in these select cases, we can see what is driving the illness and develop personalised medicines to treat them.
Screening healthy people is fraught with risks and problems – there are bound to be errors, or we may see problems where there are none. Plenty of people live their lives with “defects” they never knew they had, because they simple don’t cause a problem. A lot of lumps and bumps are benign, but genome sequencing will reveal them, and then doctors seem to have this urge to remove it, instantly. And who wants an invasive surgical procedure if they don’t need one? It’s traumatic and unnecessary. We need to balance out the risks and benefits of genomics.
And then there is the issue of informed consent – we need freedom from coercion and deception. I think one of the great issues surrounding genome mapping is that everyone assumes that the government will, one day, force us to all have our DNA on file. No plans for the immediate future. But what if we decide to sequence our genome anyway, voluntarily? The Genomes Unzipped team obviously have, and have been very public about it. Fine for them, but what about their blood relatives? Remember, you share 50% of your DNA with your 1st degree relatives (parents, siblings, children…) so if you decide to share your genetic information online, you’re also sharing a lot of your family’s information as well. And what if your genome reveals something you didn’t previously know, or didn’t want to know? It can have sensitive implications: what if you find out that you have a genetic predisposition for schizophrenia, or Huntington’s? Your children possibly do too. Then what? Do we have a Duty of Care? Yes, we can’t predict the future, we’re just “at risk”, but this new information does amount to something.
And what about data storage? Who is allowed to see it? Family? Doctors? Police? Researchers? In the case of Genomes Unzipped: everyone? Sir Walport stepped up to the mark to alert us to this. And it’s not just the mad conspiracy theorists either – what if insurance companies get hold of our genetic data? We could get higher insurance rates (or even denied insurance) if our genes suggest we are particularly susceptible to an illness. He showed explicit disbelief at the behaviour of the “Facebook Generation”, sharing very personal information with all and sundry – and once it’s online, it’s too late. What genomes can tell us might be a nasty shock. We might learn something we didn’t want to know, and certainly didn’t want to tell anyone else! This really confuses the ethical debate.
Fingerprints are a form of individual identification, but they tell you nothing ABOUT the person they belong too – they don’t tell you age, height, hair colour, socioeconomic background… But now? The informational content of DNA is going up, and sharply. An anonymised database, says Walport, is fine, but as soon as you attach a name to a sequence, there is bound to be discrimination.
As far as the Insurance Company question goes, Walport seemed to be undecided: remember, insurance is part of a two-way form of public protection, as it works on a basis of pooled risk. If you claim, the payout comes from the pool. There has been a genetic bias in insurance for a long time, not just since the dawn of genome sequence: we may have a family history of cancer, Huntington’s, and so forth, and we have a duty to disclose that to the insurance company. But, as Walport argues, we can pool genetic information without having to put namebadges in the mix.
Tricky stuff. Then followed some questions by Mark Henderson, and an open Q&A with the audience. I wanted to ask those taking part in Genomes Unzipped, “are you not scared, publicising this information online? You realise that it is now too late. If that information reveals, later on, something that you don’t wish everyone else to know, that you can’t “take it back”. That’s the beauty of the internet. Someone’s already downloaded it.” but I didn’t. Nevermind. Something for the rest of us to ponder, perhaps.