My information, my story, my life
The Internet has enabled the emergence of a collective consciousness that is unprecedented in human history. We are coming together as a hive, and the intelligence of the swarm is being mined and utilized like never before.
Knowledge is power, information is a cash commodity, and who decides how these resources and benefits are distributed? The latest controversy about Facebook's Beacon advertisements is one of many examples that suggests that the issue of user control over his or her own information is reaching a tipping point. We, the online masses, are developing a new sense that our own information is sacred and worth protecting, and not to be indiscriminately broadcast, or blindly exploited for someone else's commercial gain.
Beyond a "right to privacy" that might have meant "secrecy" in the past, we need to think about the right to control our information when it comes to:
- What I say about myself
- What others say about me, and
- How that information is used
I see these issues coming up time and time again in a thread that runs through everything from Internet safety, to social networking, creative artists' rights, consumer/patient rights, all the way up to government wiretapping and surveillance.
These issues make my head spin. I am not a privacy expert, but as a citizen/writer/parent I now feel the need to become much more educated in this area. As far as life stresses go, this is unwelcome icing on the cake. I was already overwhelmed before I felt the need to bring this new area of expertise into my life.
For the past two months, I have been struggling with the seemingly simple choice of whether to join Facebook, and so far I have decided not to. I don't see why I should hand over my information to marketers in one tidy package. The thought-provoking backlash against Facebook's Beacon advertising program has reinforced my decision to stay on the sidelines until I have a better idea about what kind of bargain I would be making with the Marketing Devil by participating. I don't like the deal so far, and Facebook has done little to inspire trust. The current bargain could continue evolving in unpredictable ways in the future. In the meantime, if I hand over my personal information, it's set loose, out of my control.
My co-author Michael's recent (parent.thesis) post about Canon camera requiring photojournalists to wear vests with the Canon logos fits into this spectrum of issues. He and I have talked a lot about the slippery slope of information abuse and the meanings of various breaches of integrity. He had referenced doctors being influenced by drug company pressure to prescribe drugs, and just yesterday a piece in The New York Times Magazine delved deeply into the world of doctors who are paid to "educate" other professionals about the merits of a drug company's product.
In "Dr. Drug Rep," Dr. Daniel Carlat relates his own experience in this role, why he thought the practice was ethical to begin with, and how his perspective evolved over time, leading him to exit the role of speaking on behalf of drug companies. This long, thoughtful article is worth reading in its entirety, and one paragraph jumped out at me:
"Na?ve as I was, I found myself astonished at the level of detail that drug companies were able to acquire about doctors' prescribing habits. I asked my reps about it; they told me that they received printouts tracking local doctors' prescriptions every week. The process is called 'prescription data-mining...'"
How do we evaluate this use of "hive intelligence"? Do doctors have a right to keep their prescribing behavior private? Even if doctors didn't mind this information leak, do we as patients have the right to insist that this information is kept private--after all, it is information about us as well as about the doctor? Do we have the right to demand that the American Medical Association should not make millions of dollars from this information, which is leased to drug companies in order to ultimately wield influence over our doctors' medical decisions?
If I try to pack too many more issues into one blog post my own brain may explode, but I do need to come back to Internet safety for a minute. Right now, much of the public pressure on "Internet safety" dumps the responsibility into parents and teens' laps with little support. I can hear that conventional wisdom roar, "Those irresponsible parents...stupid teens...doing dumb things online." If we look at the framework of, what I say about myself, what others say about me, and how that information is used, we can see it is more complicated than that. I want to teach my family to thoughtfully and safely engage in the online community, but in order for that to be possible, I want companies to develop safe programs and fair user agreements, and to give me control of my information and how it is used. And in our communities we need to keep talking about standards of behavior and realize that what other people are saying about you is as much a part of online safety as what we are saying about ourselves. Kids and adults can be harassed, bullied, or commercially exploited through online communication even if they aren't actively participating on the Internet themselves.
I expect it will take us years to unravel all this, and we'll be chasing a moving target all the while. Once we realize that none of us can simply choose to opt-out of this situation, maybe we'll all start to take it more seriously on a large scale. I may be just one worker bee in the hive, but I can become an educated one. I've had Larry Lessig's book Code: Version 2.0 on my nightstand table for about six months now. Looks like it's time to move it to the top of the pile, and to take a fresh look at the work being done by the Creative Commons, Electronic Frontier Foundation, and EPIC. I'll write up my findings in future blog posts.
Amy Tiemann, Ph.D., is the author of Mojo Mom: Nurturing Your Self While Raising a Family and creator of MojoMom.com. She is a member of the CNET Blog Network, and is not an employee of CNET. 
Unfortunately, in an era of Presidential lies, illegalities, and pardons, there is not much chance of protecting information that is so valuable to businesses. Nor can we expect Congress to do anything for the benefit of the people. Maybe it is time to vote for candidates on the basis of support for government funded elections. Imagine if it was illegal for any direct or indirect funding of elections and every politician received a fixed amount from the government. We would have to make our decisions on the basis of issues and not Madison Avenue sound bites. I digress.
It may take a Second Revolution for this country to change. Either that or we should change the phrase "In God We Trust" to "In Money We Trust". That would be fairness in advertising.
April 22, 2009 13:46 by Matt Way
How can we help Ali Ghazi Zaidi
I am asking you as President and Founder of the Milne Stevens Johnson Syndrome Society, to request your urgent help for , a four year old boy who lives in Karachi.
Ali is a survivor of Stevens Johnson Syndrome - SJS and as a result of the long term damage to his eyes, lives with severe ocular surface disease, a combination of numerous painful and debilitating eye conditions.
Ali had the most severe form of Stevens Johnson Syndrome known as Toxic Epidermal Necrolysis. All of the mucus membranes are involved and in addition to the external involvement shown in the photos, the same process was happening internally to the mouth, esophagus / trachea, lungs, gastrointestinal tract and even the genitals.
During the reaction itself, supportive treatment is all that can be offered medically and the fatality rate is over 40%. While a lot of the skin involvement has now resolved (Ali has substantial hyper pigmentation over 90% of his body) the most severe long term damage has been to the eyes. Stevens Johnson Syndrome patients are not candidates for cornea transplant and this young boy must travel to England, for intensive occuplastic surgery to reconstruct his entire ocular surface so that he can have cornea stem cell graft using corneal epithelial cells grown from the mucus membranes in his mouth. I would like to describe the different conditions that young Ali lives with every day. It is worth noting that the current ocular diagnosis is standard in SJS survivors and daily life is excruciating for this young boy.
Request for your help:
Liaquat National Hospital, Pakistan Feb 2009: Further to previous examinations, Dr. Imran Ghayoor notes deterioration in Ali's eyes with additional entropian and symblepharon which will require surgical repair, and has referred him to the Queen Victoria Hospital in East Grinstead just outside of London for extensive surgeries unavailable in Pakistan or India. The Queen Victoria Hospital is recognized as a world leader in the type of ocular surface disease (cornea / conjunctiva) and occuplastic (lid) deformities caused by SJS. Both Dr. Daya and Dr. Malhotra of the Queen Victoria Hospital have spoken to the doctors in Pakistan and India. Both Dr. Daya and Dr. Malhotra will perform an examination under anaesthetic to determine a surgical plan for complete ocular surface reconstruction. Based on conversations with Ali's current ophthalmologist we know that Ali will, at minimum, require:
Surgical removal of symblepharon with complete fornix reconstruction. Mucus membrane graft to upper and lower lids OD / OS (both eyes) Surgical repair of previous failed Tarsorrophy and Entropian. Permanent removal of eyelashes to prevent reoccurrence of Trichiasis Upon completion of the reconstructive procedures Dr. Daya will then establish Ali's candidacy for stem cell transplantation using the latest techniques of tissue engineered corneal epithelial cells grown from autologous oral mucosal cells (patients own mouth). This method of stem cell growth is not available in India where they use donor cornea stem cells for which Ali would not be a candidate due to the dry eye and required immunosuppressive therapies. Upon completion of the reconstructive surgery, Ali will hopefully be fitted with a Boston Ocular Surface Prosthesis, see http://www.bostonsight.org/.
There is lots of potential for this young boy's vision and a pain free life. The only problem so far has been accessing the necessary technologies and the funds to proceed with treatment. As such we would like to ask for your support in our fundraising efforts
during SJS
How can you help
After SJS
Send donations to the trust below
Please make cheques payable to ?Centre for Sight Trust? write Ali fund on the back and send to:
Corneoplastic Unit & Eye Bank
Queen Victoria Hospital
East Grinstead W. Sussex RH19 3DZ
Tel 07000 288288 or +44 1342 321 201
http://sdaya@centreforsight.com/
http://www.centreforsight.com/
Thanks to Helen in Canada the following has been achieved
Confirmed dates for Ali and his family (total 4) to be in UK: Arrive May 24 Depart June 13
This allows them to be available for interviews or meet members of the community once a full surgical plan with costs and anticipated timeframe has been established with Dr. Daya. This will be important for marketing the larger appeal.
Hospital: EUA dates confirmed for May 27 at Queen Victoria Hospital, East Grinstead. Funds have been sent to the hospital by the First Hand Foundation.
Hotel: Confirmed booking at Ramada Gatwick / Crawley courtesy of First Hand Foundation - funds are being sent today to the hotel by First Hand Foundation. .