Data has the power to transform our lives – collectively and individually. What is needed to unlock the profound opportunity data affords to improve the human condition – and to defend against a multitude of threats – is not technical, but an ethical framework for its use by and beyond those who initially collect it, including providing access to individuals.
At its most fundamental level, data about individuals represents a new kind of “digital self” that cannot be easily distinguished from the physical person. Some consider it a form of property; others a form of expression or speech. Those working in the area of genomics often view personal data as the DNA sequences that make us truly unique. Whatever lens one uses, it has become increasingly clear that the consequences of how personal data is used are every bit as real for people and society as any material, physical or economic force.
Properly harnessed by ethical practitioners, the principled use of “big data” sets can improve our economies, create jobs, reduce crime, increase public health, identify corruption and waste, predict and mitigate humanitarian crises, and lessen our impact on the environment. Similarly, empowering individuals with access to reusable copies of data collected by others, also called “small data”, can help them drastically improve the quality of their lives, from making better financial, education and health decisions, to saving time and reducing friction in discovering and accessing private and public sector services. Evidence of the positive impact of leveraging data, by both institutions and individuals, abounds.
However, data, like the technology that generates it, is in and of itself neutral. It can be used for good or ill. With a proper, ethical framework, data can – and should – be leveraged for the benefit of humankind, simultaneously at the societal, organizational and individual level. Misused, its power to harm and exploit is similarly unlimited.
In fact, what raises the ethical use and respect for data potentially into the realm of a fundamental human right is its ability to describe and reveal unique human identity, attributes and behaviors – and its power to affect a person’s, and a society’s, well-being as a result. Just as in the physical world, basic rights and opportunities must be preserved.
Indeed, it is already well recognized that invasions of our digital privacy can be exploited for repression, and that technologies for sharing data can be harnessed to support freedom. More fundamentally, though, we need to extend our core rights themselves into the digital world. For example, we must adapt our notion of freedom of thought to account for the new reality that much of our thinking goes on in digital spaces – as does the management and sharing of our most private information. Preserving individual freedom will now require protecting autonomy with respect to our own data.
Clearly, cultural and regional differences regarding human rights in the analog, physical world are sure to arise in this digital, data-oriented world. We do not seek to resolve those issues, but to develop a clear framework of principles to help provide data, data access and data use the protections they deserve.