Sneakwrapped Medical Forms

We are all increasingly inured to the daily assaults various institutions make on our rights and privacy through the sneakwrap terms in their forms, mail stuffers, warranties, monthly statements, etc. But some medical patients in one metropolis that will remain nameless are just a little safer today from such outrages because of one reader who read the fine print, took the time to think about it, and then sai

For his trouble, the reader got a rather sanctimonious response. "Out of the ~4000 forms we have received back, you are the first to raise these questions," the genetics institute wrote him back, saying the purpose of the form was to screen for genetic counseling, not for research as the reader had guessed. "For people who provide a family history suggestive of a hereditary cancer syndrome, a letter is sent directly to the individual and referring physician ... suggesting a referral to us. The reason we ask for DOB and SSN is that there are a number of patients who have the same name and DOB, which means the only other discriminator between two people would be SSN (we do not rely on address or phone numbers as people move all the time). The reason we have the wording at the bottom is due to HIPAA issues. Since we have no relationship to the person filling out the form, we need to make sure that (s)he agree to have us contact them if needed."

HIPAA, one of the few federal privacy laws we have with real teeth, does indeed put some restrictions on how patient information is handled. But there are no provisions in it mandating that patients be kept in the dark as to who their information is being given to and for what purposes. If anything, the real HIPAA issues with a form like this would be whether the hospital fulfilled its legal obligations to inform the reader why he was being asked for this information, or to make it clear that is was not mandatory he provide it.

"Of the approximately 4,000 responses that you have received, how many people genuinely knew that, simply by giving the form to their doctor, they were agreeing to your contact?" the reader wrote back to the genetics center. "The form is provided to patients in a potentially extremely stressful situation, and its inclusion with the instructions implies that it is a REQUIREMENT of the procedure. The form should state clearly at its tops that it is an invitation to participate, and that it is NOT required for the patient's colonoscopy. The form should NOT include information other than name, address and telephone number. You chose to use the Social Security Number as a convenient mechanism to uniquely identify a participant -- but there are other ways to do so. You could, for example, sequentially number the forms before they are sent."