In the Absence of Trust

Trust matters. If an individual cannot trust those upon whom they are in some significant measure dependent, that is a problem. In families in which there is incest, it is not unusual for the non-offending parent (if they know or suspect what is going on) to overtly or covertly encourage their child to remain silent about the abuse. Or, if the parent is truly clueless, it is not unusual for the child to keep the secret to themselves nonetheless, out of fear that they will get in trouble, be ignored or disbelieved, or receive even greater harm. However real or perceived the mistrust, it tends to make a bad situation worse.

The same is true in the less personal arena of politics. When the citizenry does not trust that those who (ostensibly) represent them will consistently put public interests ahead of self-interest or the interests of an elite minority, participation in democratic institutions and practices falters. Given the abuses of the Bush administration and the polarizing politics that have become all too common in the last decade and a half or more, there is reason for the governed not to trust those who govern. And while that may not be reason enough to simply abandon speaking up and speaking out, it is understandable that many would resign themselves to silence. There is a reason, too, that Obama fever is sweeping the nation. This candidate, unlike any in a very long time, is giving voice and hope to those who have led lives of quiet desperation.

Another area in which mistrust has become problematic is health care. In today’s New York Times, Amy Harmon writes about how “Insurance Fears Lead Many to Shun DNA Tests.” An excerpt follows:

Victoria Grove wanted to find out if she was destined to develop the form of emphysema that ran in her family, but she did not want to ask her doctor for the DNA test that would tell her.

She worried that she might not be able to get health insurance, or even a job, if a genetic predisposition showed up in her medical records, especially since treatment for the condition, alpha-1 antitrypsin deficiency, could cost over $100,000 a year. Instead, Ms. Grove sought out a service that sent a test kit to her home and returned the results directly to her.

Nor did she tell her doctor when the test revealed that she was virtually certain to get it. Knowing that she could sustain permanent lung damage without immediate treatment for her bouts of pneumonia, she made sure to visit her clinic at the first sign of infection.

But then came the day when the nurse who listened to her lungs decided she just had a cold. Ms. Grove begged for a chest X-ray. The nurse did not think it was necessary.

“It was just an ongoing battle with myself,� recalled Ms. Grove, of Woodbury, Minn. “Should I tell them now or wait till I’m sicker?�

The first, much-anticipated benefits of personalized medicine are being lost or diluted for many Americans who are too afraid that genetic information may be used against them to take advantage of its growing availability.

In some cases, doctors say, patients who could make more informed health care decisions if they learned whether they had inherited an elevated risk of diseases like breast and colon cancer refuse to do so because of the potentially dire economic consequences.

Others enter a kind of genetic underground, spending hundreds or thousands of dollars of their own money for DNA tests that an insurer would otherwise cover, so as to avoid scrutiny. Those who do find out they are likely or certain to develop a particular genetic condition often beg doctors not to mention it in their records.

Some, like Ms. Grove, try to manage their own care without confiding in medical professionals. And even doctors who recommend DNA testing to their patients warn them that they could face genetic discrimination from employers or insurers.

Such discrimination appears to be rare; even proponents of federal legislation that would outlaw it can cite few examples of it. But thousands of people accustomed to a health insurance system in which known risks carry financial penalties are drawing their own conclusions about how a genetic predisposition to disease is likely to be regarded.

As a result, the ability to more effectively prevent and treat genetic disease is faltering even as the means to identify risks people are born with are improving. [full text]

One thought on “In the Absence of Trust

  1. David, this is such a good post. People fear to disclose things to their doctors for many reasons, sometimes just because they are more afraid of the treatment than the disease, or they fear their doctor will judge them or not keep confidence. The possbility of being denied health insurance for a ‘pre-existing condition’ is real and is a special worry for young working people. As long as profit drives the health care system, it will make sense to deny care to anyone who is actually sick.

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