While I was waiting to be interviewed this week, I picked up the Telegraph in an attempt to look casual. After flicking through a few pages, this article caught my attention: ‘Volunteers sought for ‘open access’ genome project‘.
The Personal Genome Project (PGP-UK) aims to recruit 100,000 British volunteers to donate their full genome and health data in order to ‘enable advances in understanding human genetics, biology and health.’ This information will then be made available online, and researchers and drug companies can use it to develop new treatments for ‘cancer, diabetes and dementia.’ So far so good.
However, there are fears as only a smidgen of genome study results have been so openly available before. The PGP group will publish full genome sequences and allow anyone with Internet to access this information, in the hope that this will allow scientists to advance medical cures more speedily. To the media, this means that potential evil masterminds could plant your DNA at a future crime scene, or that mad scientists will have full access to your genetic makeup and might clone you for their own dastardly purposes.
On their website, the PGP-UK acknowledges that, ‘This [privacy] waiver is not for everyone, but the volunteers who join make a valuable and lasting contribution to science.’ The key word here being ‘volunteers’, as the participants are fully aware of all potential risks and must go through an arduous 19 page consent form before giving up their genome sequence. Even after this, they have 4 weeks to decide whether they’d like to destroy their information before it goes live as ‘open data’. Once published on the site, though, the information can never be wholly erased from the Internet – in other words, there’s no going back.
There are obvious issues raised with making this sensitive information so public, and the Telegraph cites that there is a ‘terrifying prospect’ of some participants discovering that they are at risk of developing the incurable Huntingdon’s disease or debilitating Alzheimer’s. The genome data will be anonymous, although the PGP-UK team does concede that it may be possible to identify individuals. Of course, living in anticipation of these conditions would be no life at all, but the participant would still need to be tested by a medical professional to confirm the risk of developing something later in life.
It got me questioning whether I would sign up. For me, despite the scepticism of the Telegraph’s journalist, I felt the potential benefits of advancing medical treatment outweighed the risks of cloning, being framed for crimes and discovering I was destined for illness years down the line. Even if I haven’t considered every aspect yet, I’m sure I’d suss out any concerns during the extensive application process. I don’t think I have any mortal enemies who’d want to frame me for a future crime, and as for the cloning, I’m an identical twin so I’m effectively a clone of my sister already. I realise that I’m approaching this in a rather light-hearted way as cloning remains a heated contentious issue amongst bioethicists.
Cloning, let alone human cloning, is still making its way through various government legislations, and in 1997 seventy seven national delegations signed a UNESCO document called The Universal Declaration on the Human Genome and Human Rights, which unanimously declared that cloning was ‘contrary to human dignity’. In May of this year, the first human embryos were cloned to be a source of stem cells (see this BBC Health article ), which can be used to produce body tissue, bone, organs, and even restore sight without the usual risk of the patient’s body rejecting it. This was viewed as a huge step forwards in developing the cells required for regenerative medicine, but there are fears that the process is unethical, or worse, the reality might end up looking like ‘Never Let Me Go’ or ‘The Island’, where cloned beings will survive for the purpose of being harvested.
Overall, I’m still intrigued. I’m going to have a closer look at the T&C’s before I make up my mind, but I’d like to hear your thoughts:
Would you donate your genome sequence?