There should be no debate about what I am permitted to know about me. Why should I need anybody’s permission to obtain any information available about me? There certainly could be legitimate logistical obstacles and there might be a cost, but there is no question about my right to have it. This is a corollary to the most basic and obvious property right: I own me.
If this sounds obvious to you, good. Consider this blog post to be a mutual rant about the fact that many individuals, organizations, and governmental institutions believe otherwise. In general, their concern seems to be that knowing certain things about myself might cause me to take actions they believe are not in my best interest, so they-who-know-best must approve my access to information about me.
Guardians of Information (GOI)
Unlike the legal authority I could choose to give a trusted representative in a health-care power of attorney or in a living will, the self-appointed data guards have usurped power not morally theirs. They have grabbed what might be called a life-care power of attorney to protect me from myself even when I am healthy and of sound mind. I’ll refer to them as the Guardians of Information: our GOIs.
If it’s about me and I want to see it, don’t tell me I can’t have it, shouldn’t see it, and would be better off not knowing.
The GOIs are self-proclaimed caretakers who pride themselves on their superior wisdom regarding what we should and should not know about ourselves. They use a multitude of methods to institute one seemingly unrelated denial of information after another. In the process, they conveniently ignore or overlook the unifying principal that makes all such denials wrong. Well, it’s just not that complicated and this is not a case by case proposition. There is indeed one all-encompassing moral principal leaving no need for each morsel of self-knowledge to become a distracting debate unto itself. To repeat: I own me.
I might be interested in my genetic data. My credit report. My medical records. My ancestral data. My criminal records. If it’s about me and I want to see it, don’t tell me I can’t have it, shouldn’t see it, and would be better off not knowing. It’s a simple concept. There is no nuance.
This is not to say anyone has an obligation to seek knowledge about me, tell me what they may already know, or provide it to me at no cost. My right to know my own genetic structure or cholesterol level does not obligate someone else to find out what it is or provide the answer to me, regardless of whether they could. But if they have or know how to get the information and are willing to obtain and/or provide it to me for free or a fee, then great! Why should I be prevented from engaging their services?
Example #1: Genetic Tests
A few years ago my daughter voluntarily submitted her saliva swab to 23andMe along with $99. They provided her with a wealth of ancestral and health-related information, both interesting and potentially useful to her and her family. Subsequently, the GOIs swooped in to save the rest of us. Thanks to them, 23andMe is now prohibited from providing their interpretation of the health-related data they used to include before we were rescued from such folly. After all, such data could be misinterpreted or misleading, which is simply not tolerable.
As a side note, my wife paid $99 to another company, Wisdom Panel, to obtain a saliva swab genetic analysis of my dog Baxter, a mutt. I now know he is a mixture of fox terrier, cocker spaniel, and schnauzer. I learned some of the behavioral, physical, and health-related characteristics associated with those breeds. Apparently there are no GOIs concerned that I might make poor decisions on behalf of Baxter. So I am allowed to learn about him, but not about me.
Example #2: Blood tests
I see my primary physician regularly to monitor my health, which requires various blood tests. I have my blood drawn in his office and they send the samples to an independent lab for analysis. Of course, the doctor visit and lab work are funded directly or indirectly by me, the customer. I routinely ask the doctor’s office to fax copies of the lab report to my urologist, my oncologist, and—brace yourself—me.
There is never a question about sending my report to the other doctors quickly. There is always a battle for a copy to be given to me prior to my consultation with the doctor. They do not generally permit patients to see their own lab report, even upon request, until their doctor has seen it first. In my case, with my doctor’s approval they eventually concede and send me the report. Having it in advance allows me to formulate smarter questions and make better use of the limited time spent with each of my doctors. I like having time to prepare, and other than perhaps a birthday party, I am not big on surprises.
Example #3: PSA tests
A PSA test result is nothing more than information, so having the test done to me is nobody’s business but mine.
Let’s examine one very specific and still controversial bit of medical data you or I might want: the result of a PSA test. Many GOIs are of the opinion that this test is particularly fraught with peril and should generally be avoided to protect us. Some say it should never be used, while others are fine with limited use—limited by them, not me. A PSA test result is nothing more than information, so having the test done to me is nobody’s business but mine. But even if it were legitimately the right of the GOIs to decide this for me, the logic they use to support their position is, well, illogical.
They say if I were to know my PSA test results I might develop a concern about prostate cancer. I might even worry about it, which would be bad for my psychological well-being. I might then decide to have a biopsy they fear might tip me off that I have prostate cancer, which perhaps I’m better off not knowing. After all, this knowledge might lead me to choose to be treated sooner than they think is justified, which they feel might not be in my best interest. I might be hit by a bus long before the cancer could kill me, so why jump the gun? Clearly, they say, this is not a road I should travel until I experience obvious symptoms when the cancer has progressed and treatment becomes unavoidable.
To be sure, this line of thinking might seem reasonable to some men—maybe even to you. Well, that’s fine. I have no argument with men who prefer not to have such knowledge. My beef is with those presumptuous people who tell me I can’t have mine.
Hope in Arizona
Even assuming the GOIs are correct in all of their bizarre concerns, why is it their business at all? In Arizona it no longer is. Arizona state law now allows any individual to request, obtain, and pay for blood tests without a doctor’s authorization. Imagine that!
Thanks to Arizona legislators and two forward-looking companies—Theranos and Walgreens—blood tests are convenient, easy, and affordable—even without insurance. You can walk into a Walgreens Pharmacy and purchase (for example) a PSA test for $12.65—less than a typical insurance copay. You provide a blood sample in the pharmacy via a finger-stick rather than the often painful probing of your arm for a productive vein capable of filling one or more vials of blood. At Walgreens in Arizona, just a few drops of blood are sufficient for analysis using a proprietary method developed by Theranos, who publishes their entire price list online.
I have learned that individuals can self-request (and self-pay for) some blood tests (traditional needle in the arm style) even near my home in South Carolina at Lab Tests On-Demand. This is generally not publicized, and even their website does not appear to be properly maintained. They apparently exist for the purpose of serving the uninsured, and are not typically even mentioned in other circumstances. Nevertheless, they represent another nail in the coffin of my GOIs.
Advice, not control
If I choose to obtain medical information independently, I would also choose to share it with my doctors and seek their interpretation and advice. Then it would be their choice whether to regard such data as reliable, and it would be our mutual decision what action to take. I choose, they choose, we choose—lots of choosing. It’s a free country.
The data train is out of the station, racing down the track, and there is no turning back.
I am not hoping to force anyone to provide me with services they do not wish to offer. No doctor should be compelled to treat me. No doctor should be required to perform a biopsy or any procedure they do not wish to perform. No lab should be required to analyze my blood. No pharmacy should be mandated to make any services convenient or affordable.
And no Guardian of Information should prevent me from acquiring knowledge about me from those willing to provide it.
My advice to those who are now or who aspire to become GOIs: find a new purpose in life. In our world, information of all kinds is becoming increasingly available cheaply, easily, and independently. The data train is out of the station, racing down the track, and there is no turning back. Information is power, and we all want and will ultimately have the power and the means to obtain all kinds of knowledge about ourselves.
Bored? Google yourself. Then send a saliva swab to 23andMe, fly to Arizona for blood tests, and while you’re at it, find out what makes your mutt tick.
Agree? Disagree? You can email me here.