Opinions & Conversation
Recently I was privy to an interesting conversation on my Facebook page where I had posted an article on CNN: “The government has your baby’s DNA“, written by Elizabeth Cohen. The overall premise of this article is the debate on whether or not it’s safe and ethical to store information about a person’s DNA, or not.
At first glance after reading the article, I wondered to myself what really is the issue “problem” with this concept? So at the risk of sounding clueless, I posted the status/comment, “…not sure what the big deal is here” and I was genuine when I posted it. I’m glad I did as it brought in some really great comments.
If you push conspiracy theories aside, and fundamentalist religious practices that may be opposed to it as well, what is the real harm in retaining that data? Here are a couple posts with varying and opposing views from that conversation on Facebook:
“…so from a law sort of standpoint you could be falsely accused of a crime, your DNA coming close to matching that of the assailant. In this day and age of CSI, Bones, NCIS, etc. people think they know what they need to know about DNA. You’d pretty much be hosed. Even if you were eventually found innocent your life would pretty much be a shadow of it’s former self.”
“Big concerns are the potential for abuse by insurance companies or future employers, as well as general privacy issues with this being easy to obtain. Do you really want someone with a little cash (e.g. aforementioned employers, government, tabloid reporters, political opponents, etc) to be able to find out you have Klinefelter’s syndrome, or a predisposition to schizophrenia?”
“So I fall on the side of making genetic testing manditory for every newborn. There are so many genetic issues (David mentioned Klinefelters as an example) that if treated early can help improve the quality of life of the individual who has it. Too many people find out about this stuff later in life and say “that explains it!”. Anyway, I think once the intial screen and notification is done, the DNA should be “separated” from its owners name and used for whatever (except cloning)”
Is The Extreme Polarization of Approach The Only Option?
I think all the points I quoted above from others are completely valid. I think the bigger question here, in my opinion of course, isn’t should we retain the data or not. The bigger question really is: Can we do it in a way that is ethical so that the benefits of this data analysis are yielded by humanity while the DNA data itself is owned, protected and secured by some sort of diverse council or committee of people to keep things objective when it comes to the release of information. Membership of this council or board can have a set of strict prequisites the aid in the protection of this data and it’s proper use. For example those nominated are not allowed to have a strong affiliation with any religious sect, political ties to special interest groups or parties, etc.
I know to some extent I’m oversimplifying it here and that with every well-intentioned person, there are 10 people with bad intentions unfortunately. The dilemma that I have morally is this I guess….why completely avoid something that can have great benefits for those with a predisposition to diseases, syndromes, conditions and other various health problems, out of fear that it will get into the ‘wrong’ hands? Why not try and figure out a way to have an objective process that is well thought out and governed by a globally represented scientific/healthcare community to manage and protect it for good use? Of course bad people do bad shit but if we shut down every innovative and positive idea intended for the better out of fear (like doing business online), then we might not get anywhere.
Onward.
Open API’s: Good for Syndication. Bad for Safety?
I’m usually not focused on writing about breaking news but being a regular user of Foursquare and then watching all the press and online noise yesterday about PleaseRobMe.com, I really started to think about open API’s, their possibilities, the good, the bad, and the bigger picture. While I’m not necessarily offended by what the PleaseRobMe.com guys have done (after all, we all have access to that data), it does remind us how a little creativity + ingenuity + behavioral data = influence. Regardless of how truthful or how it’s spun, we can essentially do whatever we want. I think the PleaseRobMe.com dudes used humor to reveal how ridiculous our assumptions are that we can just use all these tools so lackadaisically and believe that nothing bad could come of it.
It’s Just Data, Right?
There is a data collection procedure that they have done with small children when it comes to their exploratory behavior. I saw it on Discovery Channel years ago but I haven’t found a photo, video or article on it online yet. I will link out to it when I find it, or better yet if you know, send it to me and I’ll append it to this blog post and credit you with the find.
Basically, they would put a toddler in a big playroom full of toys. There would be a camera overhead in the center of the room. The child would also have a small concentrated red light affixed comfortably and safely to the child’s back on his/her shirt or overalls. For about an hour or so, as the child ran back and forth doing things, playing with different toys, hitting several different areas of the room every minute, the camera would capture the patterns of the child’s movements over a specified amount of time, drawing it’s movement patterns for the camera. Child psychologists would then analyze this crazy light pattern of movement to better understand attention spans and other developmental characteristics during playtime.
I think apps/sites like Foursquare are collecting the same type of data about adults and probably tech savvy teens too. I have two teenagers that are under my guidance with their data-enabled phones but it’s a little unnerving to think about how much easier it is now for the underbelly of society to learn about them. I’m not much of a conspiracy guy but there are some evil (and intelligent) mofos out there that see this kind of data as the framework for their silver platter of chaos that they can feast on to their heart’s content. API = Open book.
We Are A Giant Research Project
Think about all the sites and online tools that we love. Think about all those sites and online tools that we love and interact with often through multiple means that have open API’s. Think about the amount of data we are giving them about ourselves, friends and family. Just like when an MRI creates a 3D image scan of your noggin by collecting data, these types of sites are doing the same with your behavioral patterns and those you associate with. The funny (or odd) part about all of it is that we are voluntarily (and excitedly in some cases) providing this information to whoever wants access to it for whatever reason. More interesting is the fact that we are connecting apps like Foursquare to our Twitter accounts, which we sometimes connect to our Facebook accounts and other publicly available accounts like Tumblr, Identi.ca, etc.
Foursquare was designed to be a fun way for us to keep track of where are friends are (hopefully only the ones we truly trust), incorporating the fun/reward factor with badges, mayorship, etc. If you are diligent about using the app, it also is giving people an idea of what your daily routines are, good, bad, ugly and indifferent.
This behavioral data collection phenomenon is not just limited to Foursquare either. Think about all the areas now in which people make available data about themselves. MySpace, Facebook, Twitter, Flickr and the fairly recent wider opening of LinkedIn’s API channels can you give you all the info you need, a 95% heuristic view of a person’s life, just shy of physically hanging out with them in their own living room. If you are a social/tech guy like me using all these services, people can now know your name, your aliases/monikers used (47project for instance), your work history, your hobbies, your music interests, what you look like, your schedule, social and business affiliations and the convos you have within those circles…..all of this is pretty much excessible through API’s. They can also, after finding all that out about you, wormhole into your friend’s lists and find out all of those exact same details about them if they’ve posted it anywhere online. This is a really gnarly concept. The gnarliest part about it is that we are feeding it by choice. It’s not all bad but there’s awareness and responsibility that comes with the use of all these cool apps and sites.
Mindfulness
If you are like me at all, waiting hungrily on pins and needles for the next new social app phenomenon to grace your news feeds, so you can be the first to slam it onto your Blackberry, iPhone, or Android, plugging in your login creds, getting on yet another grid, remember that the more of these sites and apps you use, and the more info you choose to reveal about yourself publicly online, should be kept proportionately equal to the amount of vigilance and proactive awareness you should have about the possibilities of your data being used and/or misused.
Other Great Articles on The Subject
ZDNet: Please Rob Me: Ethical or not? [poll]
Mashable: Are We All Asking to Be Robbed?
CNET: The dark side of geo: PleaseRobMe.com
Information Week: PleaseRobMe.com Solicits Social Theft
Onward.