The advances in genetics and genomics have given rise to a flourishing personal genomics industry. All you need is a credit card and you can order a DNA kit on the internet. Once it arrives, all you have to do is rub a swab over your cheeck and send it back. A little later, voila, genetic information is sent to you, indicating your risk for a certain disease, or telling you whether your child is really yours, or something else.
Doesn’t sound too bad, does it? The merits of progress one might say. Nevertheless, the ease with which this information can be misused is causing some to feel rather uncomfortable. An article, published in Nature Reviews Genetics, highlights the opportunities for DNA theft, and the lack of solid legislative measures preventing it. In the words of the author:
In the United States, where some of the best known DTC genetic testing companies do business, little regulation exists. As a consequence, opportunities for DNA theft abound. The problem of non-consensual DNA collection and analysis raises a number of ethical questions that only a handful of countries have begun to address through regulation.
Potential ‘DNA thieves’ range from jealous husbands to private insurance firms, and perhaps even companies screening their employees. While some countries have recognized these issues and subsequently have begun to craft laws to counteract such non-consensual genetic analyses, the author mentions that this does not necessarily solve the problem:
Yet these laws can be circumvented by DTC companies that advertise over the internet and maintain their laboratories within the United States. Although the problem is a global one, a solution may lie in stricter American legislation.
Of course, stricter American legislation might mean that these companies will just relocate to another place. So, stricter global legislation is perhaps the best option, hard as that might be.
A little ominously, the author concludes:
What prevents a person from finding out whether a romantic partner carries a gene for persistent miscarriage or male pattern baldness? What prevents someone’s personal enemy from discovering and posting to the internet his or her victim’s alleged genetic predisposition to alcoholism, obesity or criminality? What prevents a political party from discovering and publicizing the embarrassing health condition of a rival candidate? In the absence of more stringent regulation, the answer is nothing.
Of course, one could ask the question whether stricter legislation is necessary. It seems unlikely that the technologies involved will come to a screeching halt. In fact, chances are they will become more and more pervasive in modern society. So, should we create new laws concerning privacy, or accept that our notion of privacy might have to change? I don’t pretend to have even the beginning of an answer, but I think that, at least, the question should be asked. Feel free to let me know what you think...
Reference
Joh, E.E. (2011). DNA Theft: Your Genetic Information at Risk. Nature Review Genetics. Published online 25 October 2011. Doi:10.1038/nrg.3113.
On the other hand, nobody is obligated to do any of that, even if they accept it in general. For instance, not everything posted on social networks is true. And if you use one thing, like a social network, it doesn't necessarily mean you post your geolocation, etc.
Given those two points, I can see the acceptance of sharing private info with the graphs and clouds expanding to personal physical traits and DNA results. But only a small amount of people will really take it all the way, at least at first. And I'm not sure who the guinea pigs will be for that.