#DataProtection: Apple gets to the core of the data privacy debate

In the news at the moment is Apple’s battle with a demand from the US Justice Department that the company builds a “back door” into one of its iPhones to extract data possibly connected with a mass shooting in San Bernardino, California, which killed 14 people, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan.

The iPhone is locked with a passcode, which the FBI wants Apple to circumvent. Apple says it would have to build a new version of its smartphone software to do this and claims that such a move would bring about "the potential to unlock any iPhone in someone’s physical possession."

Apple’s CEO Timothy M. Cook said that what prosecutors were demanding amounted to forcing Apple to create a 'back door' and accused the Justice Department of mounting a 'chilling' attack on privacy.

Cook and his corporation are backed by Google, Facebook and Twitter who have all stated that they will file 'unsolicited amicus briefs' on behalf of Apple, probably this week.

The Apple chief has also argued that creating such a program would jeopardise the security of all of its customers, describing such a code as the 'software equivalent of cancer'. The Justice Department would effectively be asking Apple to hack into its own phone by creating something that doesn’t already exist.

The government is attempting to portray the case as a one-time demand, but it will be impossible to 'un-invent' any newly designed software and critics argue that it could be the beginning of a very slippery slope that could lead to similar demands down the line. This despite the FBI’s director stating: "We don’t want to break anyone’s encryption or set a master key loose on the land."

Apple, however, sees the government’s request in the context of a larger discussion on privacy and civil liberties and says it is 'bad for America'.

This is all very topical, not least given the EU’s new General Data Protection Regulation, which is geared towards protecting the consumer - and in the case of health, the patient - from attempts to circumvent the individual’s right to privacy while still freeing up data for medical research Big Data is here and here to stay. It is undeniable that we are sharing more and more information in more and more different ways and the trick, clearly, is how to use these data superhighways for the benefit of mankind.

It is now possible to network pretty much anything – 'smart' wearables that pass data back to hospitals while we are at home and pill-boxes that tell us that it’s time to take our medicines, are just a couple of examples in the field of health.

Gadgets that send back information are, of course, part of the gathering apparatus of Big Data – data that is stored, channeled and, theoretically at least, can be used for the greater good.

But with mobile phones, laptops, credit cards, passports and even large-denomination banknotes easily tracked by Big Brother-style governments and individual hackers, the whole concept of all this technology can sometimes be a little scary. Well, when we actually think about it as, in reality, most of us barely notice all this information that we allow to be tapped on a daily basis.

It is clear that patients, researchers and industry all need information. And there’s no doubt that there are ever-more new ways of collecting it.

But to put patients at the heart of the big data phenomenon, individuals, and especially those who share all that very private data about their health, should be in control of their own information, become empowered through it, and use it to help themselves and others when it comes to health.

Data on what is a real and present danger and what is not, needs to be shared and the knowledge to interpret it increased. Causing unnecessary suffering to the patient – who is at the centre of healthcare, or should be – is clearly to be avoided whenever possible.

Researchers, it has to be said, are not the FBI and it is a total misconception that it is impossible to keep personal data safe, while still allowing its use for medical research purposes.

Data has been used in research for decades and it is a fact that, whenever they can, researchers will ask consent before using personal data. Of course, the Brussels-based European Alliance for Personalised Medicine (EAPM) acknowledges that there are huge moral and ethical questions about collection, storage, sharing and use of these data. This must be done within robust frameworks that protect the patient but do not frustrate the need for scientists to keep finding new disease cures and better drugs and treatments.

These issues need to be solved and data cooperatives are one idea gaining ground that allows the freeing-up masses of knowledge yet keeps the data providers – the patients – in control of what they share, when they share it and for what purpose.

In any event, there is a wealth of data out there now, more than ever before and growing by the day. EAPM believes that we must remember that, in health, this information should revolve around, and give benefit to, the patient.

Apple’s fight against the Justice Department and the FBI is one of the most news-grabbing of all data privacy cases and the need to find an acceptable middle ground has never been more relevant.

Apple is right to see this case in the wider context of a much-needed societal debate on privacy and civil liberties, not just in the US but across Europe and the rest of the world.

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