Imagine this scenario: you go for a routine check-up at the hospital, but instead of the doctor giving you the all clear sign, he informs you that you’ve an extremely aggressive medical condition – one so aggressive, that even the doctors haven’t encountered it before.  The medical team attempts to treat your condition, but unbeknown to you, they also take a biopsy, cultured the tissue sample and performed medical experiments on you.

Thanks to these ‘experiments’, science goes on to find dozens of cures for numerous serious illnesses and conditions, but unfortunately they were unable to find a cure for you. Now, wouldn’t that motivate you to crawl out of your grave and scare the bejesus out of the whole team for taking something so personal and carrying out experiments on you without your knowledge?

That’s exactly what happened to the late Henrietta Lacks, who was diagnosed and treated for an aggressive form of cervical cancer in 1951 at Baltimore’s Johns Hopkins Hospital.  Her doctor took a sample, cultured it, and the it is now known as HeLa cell – the oldest living cell that has been cultured numerous times and has been used by thousands of researchers all over the world.

The HeLa cell played a  vital role in the development of the polio vaccine, as well as drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson’s disease, and it helped doctors to uncover the secrets of cancer and the even the effects of the atom bomb, as well as important advances in cloning, in vitro fertilization, and gene mapping.

What Lack’s doctor did may seem unethical by today’s standards, but back then there were no rules regarding this practice.  Today it’s something of a quandary – on the one hand, the doctor’s actions saved millions of lives, but does it justify exposing a dying woman’s condition to the rest of the medical community?  Back then, nobody thought it was a big deal, but the Lacks family saw the injustice that happened then and is now calling for a change.  Though Henrietta had no say in what would happen to her cells, due to the National Institutes of Health’s new policy, her family will now play a huge role in the rightful use of HeLa cell for research and testing purposes.

Henrietta Lacks

But what led to the NIH HeLa policy creation?  Last year, researchers in Germany published the first sequence of the full HeLa genome, comparing the DNA of HeLa cell lines with those of cells from healthy human tissue.  Though this may greatly contribute in the medical community, researchers, patient advocates, and bioethicists were not too pleased about the development, stating that it violated the privacy of the Lacks family, because of the potential to identify the family’s possible disease risk.

Medical research and experiments using HeLa have accumulated so much information that there’s possibly a bunch of servers holding all the Big Data relating to it.  But with the ethics of HeLa now being questioned, one cannot help but think that if something so unethical has happened in the medical field, what unethical practices to other industries get up to whilst they go about collecting masses and masses of Big Data from people, specifically consumers, to help them improve their products or services or deliver more targeted ads?

The extensive use of Big Data has begun to worry some consumers, many of whom find this whole targeted advertising thing a bit ‘creepy’ to say the least.  Remember the Target incident wherein the retailer was the one to deliver the news to a father that his teenage daughter was pregnant, via coupons for baby products based on the past purchases of his daughter?  Was it right for Target to do this or did it overstep the boundaries? And what are those boundaries anyway?

Ethics in Big Data

To try and answer this question, Kord Davis (@kordindex) and Doug Patterson (@dep923) published a book called “Ethics of Big Data,” which explored Big Data really is, who owns the information collected from people, who maintains that data, the privacy issues and obligations surrounding Big Data, and if the use of Big Data is ethical or not.

“Big data itself, like all technology, is ethically neutral. The use of big data, however, is not. While the ethics involved are abstract concepts, they can have very real-world implications. The goal is to develop better ways and means to engage in intentional ethical inquiry to inform and align our actions with our values,” said Kord in an interview with Forbes.

“There are a significant number of efforts to create a digital “Bill of Rights” for the acceptable use of big data. The White House recently released a blueprint for a Consumer Privacy Bill of Rights. The values it supports include transparency, security, and accountability. The challenge is how to honor those values in everyday actions as we go about the business of doing our work.”

So if you’re a huge company dealing in Big Data gathered up from your consumers, you’ll probably want to pay attention to the ethics of its use, but how can you ensure this is done? One answer might be to hire a Big Data ethicist, an emerging and very specialized role which attempts to ensure any data gathering on your organization’s part doesn’t overstep the mark when it comes to your customer’s privacy.

That’s if you can find one of course. Gartner analysts have predicted that by 2015, there will be 4.4 million IT jobs created globally to support Big Data. But unfortunately, though opportunities will be created, there might not be enough people to actually fill these positions.  Right now, there just aren’t many specific classes you can take to become a Big Data scientist, let alone a Big Data ethicist.

We might soon be facing a future wherein we have more data than our experts know what to do with, and if we get to that stage we could very well see angry consumers demanding that their data should not be used for any purpose whatsoever.

Contributor: Mellisa Tolentino