Lately, I've been thinking a lot, obsessing really, about privacy and regulation. In biotech, both of these areas are of utmost importance if you are trying to produce a safe, effective, and marketable product. A company must both earn the trust of their peers and the public through honest, reproducible methods. Regulations such as those enacted by the FDA
, the EU
and other governmental authorities were put into place to protect the public and ensure that these basic research tenets are met (you should definitely check out this interesting article on FDA regulatory history)
. Alas, competition between these erstwhile goals and the intrinsic desire of industry to thrive is not a new one; though since GMO was introduced to world economies, the intensity has risen a few notches. Whether it is privacy of tissue donors
, the regulation of GMO and the ecosystem
, or monopoly disputes on things like disease screening and drug treatment,
biotech has many evolving ethical issues which require address, if not resolution.
Privacy is also terribly important in our daily lives, if not a bit contradictory to some of our behaviors. [Some of us] post on facebook and tweet every minute of our lives; heck I am on pintrest
for what is (probably) an unreasonable amount of time. All of these sites compete to have their users spend the most amount of time, upload the most content and spread their data as wide as possible. We are essentially creating a digital version of ourselves to share with our personal (or in some cases, very public) world
. I happen to think this is very interesting on many levels. There exists an increasingly wide-ranging expanse of sites that cater to our deepest interests, feeding off of our data (sometimes without our knowledge) only to sell it back to us for additional consumption. What types of rights can we really expect for our created digital worlds? We riot over facebook privacy changes and worry that employers are using our digital fingerprints in their hiring decisions. Why shouldn't they? If we've gone to the effort of creating our own personal digital world, and we've hit the "publish" button, that information is meant to spread and be shared. (Theoretically, on most of our social networks, we can update privacy settings and monitor our audiences.) Does scrolling through a privacy agreement to check a box at the bottom really constitute informed consent? We are responsible for our own digital fingerprint; we must own up to the actions of our digital selves. But can we expect that our digital privacy is entitled to the same protections as our basic human rights? I suppose we will have to see how this plays out; and it may be sooner than you think.
Philosophers, scientists and religious peoples in every age have tackled the question of identity, in the digital age, this question is perhaps even more interesting. Each of us makes up a piece of the greater net, generating a large hierarchy of digital content. The web is supported by sites made up by individual users who contribute, support, consume and share media.
Much of this content is original, with owners who claim it proudly, who will fight to protect their right to own and distribute their information. Still more users express themselves through the lens of other's content. We identify as red sox fans, trekkies, darcy-ites. We use other people's music and art to inspire us. It can change minds and perceptions, generate movements of freedom, or hatred. Through this network each of those users is uploading many different aspects of their identity; in essence that user creates a digital back-up of their perception of "self", replete with both honesty and imagination. Since it is a world that we create, we have the ability to design ourselves as we desire; there are those complete fantasies which only exist in our mind but can be made reality through the art of simulation, there are copies, and forgeries, and lies to which many claim ownership. There are also truths; banalities shared among friends and faux-secrets between lovers. If we have backed up much of what makes us human, is this digital extension of our self entitled to the same individual rights? If so then regulations that invade our digital privacy, that attempt to stem the flow of digital information to the public are in violation of our rights. Many regulations can be very beneficial, there are programs that protect our safety in food production, clean water, and crime management. There are still others that are hashed in secrecy with little expert consultation. These are often enacted by biased people with ulterior motives. They are put into place to protect us from something, digital piracy, or to promote innovation, patent laws. When the digital revolution has been monopolized through those best and biggest companies, what protections will we be afforded? Will we have the right to access content and information, or will we be subject to restrictions decided by arbitrary parties in order to protect innovation. Patents currently exist to allow the creator of a biotechnological product, for instance a drug product, to have exclusive access to distribution of that technology for many years. Some of these patents allow the initial term to be continually extended as long as the company shows proof of change of design. This has led to companies making minor adjustments to lucrative formulas in order to continue to hold exclusive rights and disallow competition. These are regulations that are designed to protect innovation. I am clearly not the only one thinking about reforms to the system. The recent supreme court hearings provide sufficient evidence of that. But I wonder at what seems to be a systemic issue within many of our regulations. Many fail to be flexible enough to anticipate future technologies. Arguably, writing such a policy could be a nightmare, but In the end will big companies have the right to claim human genes engineered by nature and
elucidated by human ingenuity?
If we consider privacy a basic human right, then does it not extend to all aspects of our lives, insofar as they are not inflicting harm? But what can we consider as a personal aspect? When does extracted DNA or tissue cease to belong to its progenitor? We have already said (in the US anyway) that informed consent is required for all tissue donors and subjects involved in clinical trials
. After informed consent, subjects are not entitled to profits from future discoveries, yet corporations are entitled to patent biological samples such as DNA fragments when they have used novel methods to identify properties in those areas. This is a major source of funding in Academia and Industry, but it also enables the patent holder to enlist a variety of usage and licence agreements and thereby profit from the original discovery for years beyond its initial development. Industry claims this fuels innovation. We give a similar informed consent when we use social media and other sites. At the same time as companies press for regulation, we are setting up open-access journals and classes to spread knowledge, and new sites are constantly springing up giving users access to "bootlegged" content. In the end will we decide how we use this rich network of data, how we protect it? or will we allow others to decide for us?
Lately I have been considering trademarks and patents. I recently read The Immortal Life of Henrietta Lacks by Rebecca Skloot, wherein we are given the story of Henrietta and her family in parallel with their continued unforeseen and frequently overlooked contribution to science, the miracle HeLa. If you've never heard of it, HeLa is an immortal cell line that survived the blunders of the early scientific learning curve, and has since allowed for the foundation of cell biology, genealogy, virology, and countless other fields. Today HeLa cells, which ceased to belong to their progenitor the minute they left her body, have been used to generate uncountable sums of money and spawned the futures of many brilliant scientists. My graduate school thesis, using live cell imaging to observe how cells divide in the presence and absence of cofilin, would not have been possible without Henrietta and HeLa. The topic alludes to the recent ongoing dispute with biological patents. We have benefited as a society from this open-sourced material; had the cells been patented, the spread of knowledge would likely have been much slower, and many techniques would not have been developed. This is a timely issue with the recent loss of Aaron Swartz. I look at our history of fighting to keep control over knowledge, to benefit financially wherever we can —we live in a capitalist nation after all. I remember learning as a kid in history class about monopolies and the fight against the big corporations, and yet here we are allowing exclusive rights to information. We are selling information to the highest bidder, be it biological or digital. We as humans want diversity, we want knowledge and we thrive with an open spread of information.
I was attempting to set up my fourth qRT-PCR when the coworkers began talking about the brewery. Luckily my headphones obscure the most lucious of details, but by the time I've diluted my standard curve, I am salivating, too bad I shan't be joining them at 4. You see, today they've invited execs from a potential merger company (let's call them Smiley-town, since it's fun and we can), and though I did try, I could not get here at a reasonable time this morning. Instead, I had the lucky pleasure of walking into the building just ahead of the big wigs, forcing me to cross the threshold flanked by the awaiting CEO and the visiting COO (people I typically like to avoid). Of course, I also sit right next to the door, so now everyone gets to watch me unpack my purse and log in to my computer while they wait for the Smiley-town execs to get their briefcases in order. I happily had some amplification plots already loaded on my sleeping computer, so at least I got to look like I was doing something when the smiley-town folk were ushered into the adjacent conference room in a blur of movement meant to hide their tardy employee. Ah well, the joys of industry!