There comes a time towards the end of every undergraduate’s career when they begin to wonder how their Facebook page reflects their personality and lifestyle, and if this is the image they really want future employers to see. An employer needs to know how well you could do the advertised job. How you spend your weekends is irrelevant, and understandably there are certain things we like to keep private. So imagine how you’d feel if, in the future, the pre-interview selection process also included a check on the very essence of your make up – your personal genome sequence.
The genome is made up of three billion pairings of only four amino acids in varying combinations, forming your DNA. The information contained in this exotic language is essentially an instruction booklet, detailing how to build an individual person. The genetic code can tell you what hair and eye colour you have, if you have attached or detached earlobes and whether or not you can roll your tongue – but that’s not very exciting, we know all this stuff. The interesting part is the potential to make predictions about the future. Contained within your genome also lies information that details your risk of developing certain diseases later in life.
Currently, personal genome sequencing is mainly used by scientific researchers and medical professionals. With the price falling rapidly, however, the procedure is already enticing a growing consumer audience. But what can we learn from this information? How safe is a sequenced genome, who could get hold of your details, and what might they use them for? More importantly, how much do we really need to know about what our future holds?
The Human Genome project originally set out to identify all the genes found in human DNA. It took thirteen years and cost £220 million to complete. Its publication in 2003 was a huge achievement, but pales in comparison to the prediction that by 2020 all newborn babies will have their genomes sequenced as a matter of course. As the number of sequenced genomes increases, scientists will become better able to translate the language of genes.
In return for a saliva swab, people who undertake the sequencing analysis will receive a read-out of their genetic code. Amongst other things, such as physical traits and heritage details, this read-out will show the individual’s likelihood of developing different diseases. If a higher than average risk for a certain disease is found they may wish to be screened more regularly, seek lifestyle advice, or even benefit from preventative treatments.
The continuously falling price of this technology is quite staggering. In 2007 a genome could be sequenced for $10,000,000 and took 4 years; by 2008 the price had dropped to $100,000 with the process taking only 4 weeks. A company called Complete Genomics, based in California, is now claiming that it will be reading full genomes for just $5000 from June this year – a bargain at less than the cost of one year of your degree course. Shorter versions, which look only at key genes related to common diseases, such as diabetes, breast cancer and Alzheimer’s disease, are already available for about a quarter of this price.
There are certain caveats that should be highlighted, however. Whilst the presence or absence of a particular gene variety can be used as a guide to the probability of disease, this information is not definitive. Many diseases depend upon a combination of numerous genes and are strongly influenced by the environment; for example, smoking, diet, exercise, and exposure to UV rays or certain chemicals.
There are also concerns about the privacy of genetic information. In the hypothetical situation laid out above, employers able to see your genome may be influenced in their decisions by the likelihood of you taking a lot of sick leave in the future. Discrimination in the workplace is illegal, but in practice it’s hard to see how employers would not want to take this information into account if they had access to it. But it’s not just diseases; as the human genome becomes better understood there is chance that it may reveal information that indicates your intelligence, temperament or even sexuality. More importantly: how would insurance companies look upon a customer who was genetically predisposed to illness, and therefore highly likely to make a claim? They may be able to increase the premiums of a racing driver or a sky diver but what is written in the genes is out of anybody’s control. It’s a difficult one to answer and laws in this area are currently pretty wishy-washy.
Over the last year the House of Lords has been conducting an inquiry into genetic medicine that assesses the social impact, security and privacy issues related to revealing genetic information. The outcome of this enquiry is due to be published anytime now. About time too. As scientific capability pushes forwards, leaps and bounds ahead of government legislation, there is a real risk of this technology being abused. It is essential that laws are put in place to protect the privacy of those individuals who choose to go down this route of self discovery.
With celebrities and other high-flyers holding ‘spitting parties’, personal genome sequencing is currently the height of fashion. But there is another problem with the growing popularity to reveal the genome’s secrets. Many of the companies, especially the cheaper options, provide the data with no follow-up support – cue a barrage of doctor’s appointments booked to discuss the results. This is putting extra strain on the healthcare system and costing taxpayers money. Genomic read-outs provide purely statistical chances of developing disease; they are not a diagnosis. Therefore it is questionable whether the cost of these additional consultations is money well spent.
We can only hope that the publication of the House of Lords report will make way for a society prepared to handle personal genomic data. Companies offering genome sequencing services to the public should be obliged to present the data responsibly. The privacy of the sequence data should then be legally protected. On a more personal level, we should also be asking how well individuals are prepared to deal with this information. The translation of a personal genome sequence might turn out to be reassuring, it may be the motivation needed to attain that healthier lifestyle, but it may also be a huge burden. If someone were to tell you had a 70% chance of developing heart disease, even with support and advice from your doctor, would you honestly want to know?