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DNACaregivers not only don't want patients to understand their own health care system, they even don't want them to understand their own health. 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 knowledgeNow 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 and realistic 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 blissDoctors 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. But 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. Patients' Rights?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? It makes sense to doctors when they might make less profit on an office visit because of it. 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 are concerns doctors have about their own profit. In order for doctors to avoid the possibility of paying a portion of an office visit fee for patients to learn about their own health, doctors got a law passed to prevent patients from finding out anything about their own DNA without first paying another fee to doctors to get that information. And how often would the doctor collect the fee without letting the patient get the information? Fees for NothingIt turns out to be yet another example of paranoia on the part of the medical profession preventing patients from running their own lives. Their self-interested speculations were unfounded and, in the end, wrong. Yet now there is a law unfriendly to patients on the books in New York because of it. Putting more fees and more office visits between patients and the 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 that represents patients. 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 interests of patients with a more sane and less self-aggrandizing perspective? 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 vested interests of people in health care. The studies appeared in The New England Journal of Medicine, January 2011 Hit your back button to return to where you were |
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