Big Data and Rare Diseases, Discovery and Privacy

Data in the Modern Age

The depth of information available today is unique to our age of technology. Current advances provide a platform to consolidate information on a wide array of personal characteristics on much larger groups of people. Both of these characteristic make the information much more precise to the individual, which allows researchers to have more reliable and valid data. This is credited as partly responsible for the global rise in life expectancy.

The trade-off between the potential and the threat of big data is seen widely. Big data provides enormous power to those with it, sometimes at the expense of the people it’s compiled from. When it comes to research, more detailed data is invaluable because it provides insights into more obscure patterns and clues, and can be more reliably verified.

How it Affects the Rare Disease Community

The rare disease community knows first-hand how valuable big data can be to the medical community. The infrequency of rare diseases often prevents doctors from connecting the dots between those with similar symptoms or from being capable of gathering reliable results of medications and treatments. However, big data can help connect and reveal the subtle patterns that extend across wider regions. There has been an unprecedented increase in the quantity and quality of information available to be compiled, studied, and analyzed to improve health solutions; and many rare diseases have only recently been discovered as a result.

This data thus provides enormous power to those with it. However, the more information available, the more a persons privacy is eroded. This data is not only extremely valuable for researchers, but for the individuals whose medical lives are outlined in completion. While the data poses a less privaxy problem if it’s detached from the persons identity, often it’s inextricably linked to their name.

Who has the Data?

It’s important to ask who has access to patient information is an important question when considering individual privacy regarding medical history. Those gathering information must be careful that they have obtained the data ethically and transparently. When research centers or national databases seek to access such personal information, they must be ready to respond to questions about whether they’ve properly sought consent. Outside actors such as insurance companies, app developers, and marketing groups vie for access.

Often individuals are unaware of what their consent means and who actually receives access to their information. It’s common for individuals to opt into something generally, without understanding the important details. This is typical when people try to read the long-winded and unfamiliar language of consent agreements: but in this case, there’s more at stake than usual.

Once responsibly in possession of medical records, researchers must take care to protect it from potential cyber threats that similarly find value and power in the knowledge, and would like access. Hospitals have been victim to cyberattacks that have awoken the field to what that could mean. For example, the WannaCry attack in 2017 showed how canceled appointments and changed plans in a hospital are not without consequences. On a larger scale, it can put the hospital operations into chaos. On a smaller scale, though unlikely, patients do not want their personal information available for any crimes of identity theft to blackmailing.

Amidst any questions about privacy and security, in the end, this information is only sought after because it has so much potential. Most of all, this is true for doctors and researchers who have had a world of knowledge opened up, and thus have been empowered to discover much more. While security is often running to catch up with the fast turning wheels of technology and development, the enormous potential uses of the data keeps growing too. The rare disease community doesn’t need to be told twice how much big data has enabled, there is already bountiful examples in many lives. They just need to be told to be aware of what sharing means for them personally, so there’s no surprises later down the road.


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