The essential link between medical research and the humanities: keeping pace with the ethical questions posed by new invasive brain technologies

In Australia, we are living longer than ever before. We rarely die from the same diseases that killed many of our ancestors. But, we are seeing a significant increase in neuro-degenerative diseases due to our ageing population. Some estimates suggest that the number of patients suffering from diseases such as Alzheimer and Parkinson's will increase drastically in the next 20 years, in some cases it may increase up to 80 percent. Our society is facing a very serious challenge. Due to science and technology, the field of medicine has advanced radically. Invasive new brain technologies could be the best way to manage this crisis. New procedures and technologies are being developed all the time. When can scientists be sure they have enough evidence to try these in the brain of a human being? Policy makers frame policies that allow cutting edge technologies to translate into safe usage. Who advises them?

Who anticipates the ethical issues raised by the development of new technologies?

It is now possible to implant a device in the brain of someone with a neurological disease. These devices target the specific area of the brain that causes the disease. Most patients love the results; however a significant number have seen their lives fall apart. Invasive brain technologies present some profound ethical questions. It is hard to measure the way somebody feels. What if a patient loses control over their life, or even loses sense of their identity as a result of invasive neurosurgery? Can the scientists who devised this new technology, or the neurosurgeons who so skilfully implant it in someone's brain, fully understand its consequences?

'The next 20 years will see thousands of Australians retire. The sad reality is, that many of them will be faced with the onset of Parkinson's or Alzheimer's disease,' said Dr Gilbert.

'We don't have a cure yet, but in some instances, a brain device can alleviate some symptoms. However, it may sound surprising, that many patients with Parkinson's don't feel better even if their symptoms are gone.'

Dr Gilbert has found that a significant proportion of people, though physically improved, believed their lives were better before they had the device implanted despite diminution of symptoms. Some patients became severely depressed, with catastrophic results in some cases. Others claimed to have lost their sense of identities. Some were divorced and others stopped working.

Parts of Dr Gilbert's work consist in interviewing patients in order to understand their subjective experiences of being implanted with these brain devices.

'The question is, will the patient be better off in the long run?' said Dr Gilbert. 'We need to ensure the long-term safety of these procedures. Understanding the impact of these technologies on a patient's mental health, sense of self and identity is vital.'

Dr Gilbert is currently grappling with the ethical questions that a new predictive and advisory brain device for people with epilepsy may cause. Once implanted in the brain, this device can forecast and predict a seizure, then warn the person.

'We need to analyse the effects of these devices and make sure patients clearly understand potential risks,' said Dr Gilbert. 'Miracle stories do happen, but they are not guaranteed. Patients' expectations need to match with real therapeutic outcomes; patients often overestimate therapeutic benefits when agreeing to be implanted, especially in experimental trials'.

'We often use the technology first and ask the ethical questions later. We need to make sure ethics keep pace with technological development. Ethics is a huge part of medical research'.

'I want my research to help people,' said Dr Gilbert. 'Translating ethical issues into clear policy and achieving a better outcome for patients is my ultimate objective.'