Recently, US Vice President Joe Biden launched ‘The Genomic Data Commons’, an open-access database that contains genomic and clinical data of 12,000 patients in order to better understand the development of cancer which will then help tailor treatments for each individual patients cancer.
Such an approach to treatment is known as personalised medicine and is touted as the future of health care. This may be the case, but it’s easy to be blind-sighted by the possible benefits we can reap from this rather than critically looking at the possible issues with such data.
The Journal of Law and the Biosciences outlined several possible issues with personalised medicine. These are:
Personal Privacy – In order to determine how certain genes contribute to diseases, large samples of human tissue, blood, urine and saliva need to be stored in biobanks. These can be set up by public or private sectors. Members of the public are then invited to donate their materials and then are asked to share personal details concerning their lifestyle, medical and family history. Clearly, a lot of private information is required for personalised medicine to work. So how is this information protected and how can we tell it is used ethically? Well, many biobanks have established their own robust governance frameworks so that the participants wishes are respected and so the organisation acts ethically. This sounds like a good regulation, however this doesn’t apply everywhere. So the question is who can we trust? A recent example is from a few years ago, when Arizona State University agreed to return blood samples to the Havasupai Indian tribe after complaints that researchers had used the samples for genetic studies without their consent. These are the best case scenarios, what if there exists a corporation with more sinister motives and they could have quietly done the tests without returning the samples?
Consumer Protection – Personalised medicine requires a new relationship between the individual and key players in the biomedical sector. Unlike traditional means, in which there is a relationship between doctor and patient in which the patient is given the doctor’s advice and recommendation, this is cut out from personalised medicine. Instead, consumers can buy genetic tests from private companies without consulting anyone. The danger with cutting out doctors from the equation in this is the ulterior motives of businesses can be awfully manipulative. Think of the marketing ploys know, peddling on nutritional products for weight loss and cosmetics to convince customers that you need a youthful glow to look beautiful. The main issue with this is that, while looking younger may be possible now, what if there are more unethical alterations one can make to themselves? Would they be ethical and moral? Who can control this? The short answer is that we don’t know and that is something which needs to be considered.
Health Care Costs – Such a system which allows one to find out more about their genetic make-up could drive fears about genetic risk factors for disease. This can cause some people to pay up an exorbitant amount of money for possibly unnecessary tests and treatments. We’ve seen this before with Angelina Jolie’s public disclosure of her high genetic risk for breast and ovarian cancer, which actually promoted a spike in women seeking genetic testing. Simply put, word of mouth can cause panic and drive people to spend money on tests they may not need.
The overall picture we get from these possible issues is that our government is not currently well equipped to prevent these issues. So over the coming years new laws will need to be made in order to protect citizens. However, there is a fine balance to the control, as an expert group warned that it may stifle research. But again the agendas with such a statement are not unbiased. Ultimately, it comes down to trust between the public and organisations. When the time comes, ensure to think critically about these organisations and their motives. Because in the wrong hands, such technology could be turned against us.