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Fine print, Protecting yourself

Take my bone marrow, but not my personal information

Connie Prater

It sounded like a harmless request this past weekend: Sign up to be a bone marrow donor to potentially help people who need life-saving transplants.

I was among tens of thousands of people who packed in to a popular live music festival (Austin City Limits) held in Austin, Texas, each year. I had just arrived and was walking the perimeter of the festival, stopping in at different vendor booths. At one booth, a smiling man approached me asking if I’d like to sign up to be in a database of potential bone marrow donors. OK, I said, walking under the canopy.

Donating bone marrow is not like giving blood. As the Mayo Clinic explains, it can take one to two hours under anesthesia and may take a few days to recover fully. Doctors typically insert a needle into the back of the pelvic bone to extract the marrow. Some donors experience lower back pain, stiffness when walking and fatigue as a result of the procedure.

Bone marrow is used to help people who’ve been diagnosed with diseases such as leukemia or lymphoma.

The man in the booth at the music festival spoke convincingly about how I might be a match for someone, especially someone in the African American community, who is on a waiting list. Umm, sure, I said again.

He handed me an ink pen and a donor application on a clipboard. “We are fully HIPPA compliant,” he said, referring to federal health privacy laws that prohibit disclosure of patients’ personal health information.

Before I filled out anything, I read the form, going down the page and glancing at the type of information they wanted from me:

  • Full name.
  • Current address.
  • Date of birth.
  • Social Security number (which was optional).
  • A contact person who doesn’t live with me.
  • My general health status.

The more I read, the less appealing the gesture of donation became to me. With this information, someone could open credit card and charge accounts in my name and go on a shopping spree. I put the pen down and turned to the man. He wasn’t smiling anymore and neither was I.

“I can’t fill this out,” I told him. “I’m concerned about identity theft and giving up my personal information.”

He repeated that his organization is HIPPA compliant and added, “The applications will be entered into the computer on Monday.” His words solidified my resolve to not fill out the form. It was Saturday and this form with my personal information would be sitting around in a box or in a car for the next 1 1/2 days. I shook my head, no, and apologized before walking out of the tent.

I was willing to give up my bone marrow — a process that can be extremely painful — but not my personal information.

The bottom line: I can still sign up to be a potential donor. However, I prefer to provide the personal information necessary to start the application process in a safer location, such as a secure website.

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