Whose data are they anyway?

What a difference two days make!

First, T-Mobile in the UK informed the Information Commissioner’s Office that some of its own rogue employees had sold on the firm’s contract customer data to third parties. These third parties then ring the contract customers just before their contract expiry to offer deals that may or may not be kosher, or the best deals on the market.

So exactly what data might a mobile network operator hold on a contract customer? These data include the customer’s name, address, date of birth, and bank account details or credit card details for collecting bills. A credit check is also run before contracts can be agreed. While the identity of the said “third party” is unclear, there is of course no compensation for any mishaps. So much for our famed data protection code that prevents more things from happening than it enables!

A day later, Iceland’s deCODE Genetics filed for asset protection under Chapter 11. The firm’s customer testimonials include one from Dorrit Mousaieff, Iceland’s first lady. The firm offered personalized DNA testing through its deCODEme website too.

Under Chapter 11, deCODE is now looking to sell its assets. These “assets” include the genetic data of 140,000 Icelanders. And DNA samples of an undisclosed number of customers, their identification details, possibly the reports of the analyses conducted on the DNA samples. All held under contracts which prevent the sharing of the data or the information with third parties such as insurers etc. But will that hold when one contracting party goes bust? Who is the custodian of that contract? Who will uphold it and what recourse exists for customers whose DNA and data are hanging in the balance?

Meanwhile, it was reported that a credit card processor in Spain was being investigated for enabling a major credit card scam. The scam has affected over 100,000 cards in Germany. While their credit card contracts protect them against fraud, someone will end up paying for it. Depending on where the PCI-DSS compromise is found and how the liability is established, any or more of the players in the payment value chain – the issuer, the acquirer, the processor, the retailer or the customer – may end up suffering the real monetary loss.

Note the commonalities? All three industries are highly regulated but so different from one another that one may be tempted to ignore any possibilities of transposed learnings. Two major themes emerge:

  • These incidents point to some of the many complex challenges that unite otherwise disparate, highly regulated businesses: customer data ownership, data security, privacy breaches, liability, recourse and compensation.
  • They also illustrate while human beings – employees, third parties, contractors, service providers – remain the weakest link in data protection, the more fundamental questions are often missed. These could be related to the business’s survival and how regulatory complexity may mean that resolving data breaches is not really straightforward.

As a large number of consumers sit in limbo in fear of their data falling into the wrong hands, it has to be asked: When the custodians fail, who protects the consumer?

These test cases will all provide fascinating insight and may well set the precedent. Not least set the stage for the essential reform to remove all the unnecessary information that businesses insist on collecting from customers, when they have no way to guarantee the security of the data.

Art or Science?

Is management an art or a science? This is the direction in which the conversation in the comments section of an earlier post on Recession-proofing Your Career veered. The answer, just as with other questions in life, is not clear cut, nor all-pleasing at all times.

But to me, the question should be different. Are art and science really so different, so different as to be used as antonyms of some sort? I do not think so. The Wellcome Trust, the UK’s largest medical research charity, also seems to consider art inspired by science a cause worthy of some £5.5M since 2002.

The beauty of science and mathematics, in my mind, is better than, if not at least akin to the best of art. As some of you may know from my past writings, I am no philistine, a term which is a shame to use as a derogation, when the early history of Philistines shows them to be quite a cultured people. But I digress.

My attention was recently drawn, by a friend and fellow PhD student on a train ride from Cambridge to London, to a beautiful example of art converging with science and the merged entity being thrown in the midst of the community’s quotidian life.

Alongside the train track runs a cycle track and footpath. And on that footpath have been laid some 10,000 colour stripes. These stripes represent the genetic code for a vital human gene: the BRCA2, which was sequenced at the Wellcome Trust Sanger Institute in Cambridge. BRCA2 (pronounced “Bracker Two”) is, as some of you may know, is a human gene, alterations or mutations in which may be involved in some cases of breast and ovarian cancer.

Here is a picture of the said pattern of BRCA2 made of coloured stripes, that I took from the moving train.

BRCA-Cam

(c) Picture taken by me, on Nokia N95, February 2008: The BRCA2 gene map on the cycle path from Shelford to Addenbrooke’s, Cambridge

Art or science? What do you think?

Me? I think there is no separation between the two. Science is the art of explanation; art is the science of making more than the literal sense of the explanation in a broader, richer, more complex context.

Other genetics-related readings on this blog:

The genetic research gold rush

Farmaceuticals

The genetic research gold rush

When the California gold rush began, the story goes that it was the guys selling picks and shovels that made the booty.

What would be the equivalent of “picks and shovels” in genetics research then? Well, it would be “platforms” that enable research in many different ways, and “methods” of analysing data so it makes sense as information.

The “knockout mouse” is an example of such a platform. In the simplest terms, a knockout mouse is one where both alleles of a particular gene have been replaced with inactive alleles.

The knockout mice have been used to create transgenic mice. Transgenic mice are created by introducing foreign genetic material into knockout mice embryos.

Transgenic mice are like a human pathology laboratory, which can enable the modelling and hence the study of cancers, obesity, diabetes, arthritis, and Parkinson’s disease amongst other health issues.

Since the knockout mouse enabled the gold rush of genetic research, it is only befitting that the ultimate booty – the Nobel Prize – goes to those who made it possible.

Farmaceuticals..

Yes, I know that post title should have been followed by ‘sic‘ in brackets. I can spell fine but before ‘pharming‘ was cruelly hijacked by ‘phishers’, it used to imply a combination of the agricultural methods with advanced biotechnology. This involves insertion, into plants and animals, of genetic material that would code for useful drug products, which can then either be purified or just consumed directly.

A well-known example of such GE* food products is of course Golden Rice. Golden Rice is created to deliver Vitamin A, the deficiency of which causes night blindness, common in developing countries. Its health benefits notwithstanding, Golden Rice has attracted a lot of criticism from anti-globalisation and environmental activists. If the science were to be considered, separate from the argument surrounding private profits and patent ownerships, or political will, it is a good illustration of what can be achieved with technology.

The promise of the technology made way for European funding to explore the development of vaccines and drugs for HIV, rabies and tuberculosis.

Today it is reported that Sembiosys, a Canadian firm, has developed a safflower variety, with human genetic material added, that can deliver insulin. Unlike bacterially-produced insulin, these plants needn’t be kept in sealed areas but can be grown in open spaces. Trial planting has been done in Chile, the US and Canada.

Although the number of Type-I or insulin-dependent diabetics is smaller (5-15% of all diabetics) than those with Type-II or non-insulin-dependent diabetes, the market is still considerable. The incidence of Type-I was commonly associated with age but in recent years, a huge growth has been seen in children. Much as this is no cause for joy as a society, it still means that demand for insulin will grow.

The regulatory loop of bio-equivalence to human insulin of course yet needs to be cleared, if the firm is to have hopes of large scale commercialisation, and large scale profits.

As block-buster drugs become more elusive, new methods of production and delivery of drugs will gain importance. Since food is essential, what can be better to deliver essential drugs and ensure enhanced compliance?

* GE (genetically engineered) is technically the correct term for what we commonly call GM (genetically modified) in food context.