Does it make sense to give the health care community the power to decide what information you are allowed to know about yourself?
Companies began selling DNA test results directly to patients. Worried doctors and other health experts persuaded New York State to pass a law against that in the guise of protecting patients from knowledge that they might not understand or might misinterpret or that might traumatize them or drive them to seek radical treatments that were not necessary. The doctors and health experts persuaded New York legislators that they, the caregivers, needed to supervise this testing for the good of the patients. Patients just were not smart enough to run their own lives.
You need a referral for knowledge
Now there have been two studies in which researchers have found that the doctors and other health care experts should try being less paternalistic and try getting more informed about patients.
One study followed more than 2000 people who had genomewide scans and were given estimates of their genetic risk for more than 20 different conditions. About six months after patients received the 90-page long reports explaining their genetic risks, the level of psychological anxiety had not risen among the patients. They were not overwhelmed by the information and had not engaged in rash behavior as a result of it.
The only change was a tendency to seek more medical screening in order to learn more.
Ignorance isn't bliss
Doctors and health experts argued that there was no reason to get tested for conditions doctors could not cure anyway. But to patients, even bad news was preferable to the anxiety of ignorance and uncertainty. Patients are willing to pay for information even when it is imprecise because, to them, imprecise information is better than no information. They want to understand their world and be more in control of their lives.
Caregivers want that control
Originally patients had to go through a doctor and then a counselor to get a genetic test like these. Then new companies cut out the middle people and began doing business directly with consumers, saving consumer hundreds of dollars in fees to the middle people.
Shouldn't patients be able to gather information about their own bodies without having to get permission from, and pay fees to, a doctor and a counselor?
Whose information is this?
Here is are some of the arguments doctors used to rationalize not allowing patients control over their own lives.
"What should happen, for instance, when a 30-year-old man with no relevant signs, symptoms, or family history shows his doctor a genetic test indicating that he has an elevated risk of prostate cancer? Should his prostate-specific antigen level be measured? An ultrasound obtained? A biopsy performed? What level of risk should trigger further testing? What are the liability risks of not pursuing a diagnostic evaluation?
Doctors argue that additional information will lead to additional testing that increases the cost of health care and risks accidental harm to patients.
That is a pile of condescending speculation founded on the assumption that patients are too stupid to run their own lives. The two studies recently done found that none of the above concerns are valid concerns. And yet, based on demeaning and unfounded speculation, the medical industry got a law passed restricting the access of patients to information about their own bodies. It's the same thought process that resulted in HIPPA laws that further disempower patients. And the liability limitations that further disempower patients. And the constant encroaching of medicine's power over patients that will continue until there finally is some official representative of patients to represent the interests of patients in these issues.
I consider it a basic human right to be allowed to learn about your own body. Since when does it make sense to deny a basic human right because it might cost something? Or because it might inconvience a doctor?
When a health care professional might make less profit on an office visit because of it, it makes sense to them to deny rights to prevent that. Often insurance companies pay doctors a set fee for an office visit and, in order to discourage unnecessary testing, any tests ordered come out of that fee. All of the items listed in the above paragraph could reduce the income of doctors. But it increases income for doctors when patients have to come solely to get a referral.
Fees for Nothing
Whatever the motivations, it turns out to be yet another example of paranoia on the part of the medical profession preventing patients from running their own lives. The self-interested speculations of health care were unfounded and wrong. Yet now because of it there is a law on the books in New York that is unfriendly to patients. Putting more fees and more office visits between patients and information about their own bodies means patients end up with less information.
This is another example of why there needs to be a guild or board or agency that represents patients (like perhaps a State Patients Board). When health care providers were persuading New York State legislators that a law had to be passed to prevent patients from gaining knowledge, where was someone to represent the perspective of patients, and perhaps science, on that?
This is a lesson in what happens when government tries to regulate medicine rather than empowering patients to do that themselves - something they will never learn as long as all their information about health care comes through the filters of the subjective perspective of people in health care.
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The studies appeared in The New England Journal of Medicine, January 2011
Information about New York State laws requring referrals come from "Heavy Doses of DNA Data, With Few Side Effects" by John Tierney in the New York Times, January 17, 2011.