#79 It's Complicated

Medical privacy is a real hot button issue these days. Given the things that people can learn about you from your medical records or even a blood test, it should be a much discussed and regulated issue. Are we going about it the right way?

I just finished reading “The Immortal Life of Henrietta Lacks” by Rebecca Skloot. This is a non-fiction book about Henrietta Lacks who was a 31 year old black woman in Baltimore in 1951 who died of cervical cancer. By all accounts her death was horrific and painful, despite state of the art, free care at Johns Hopkins Hospital. During her treatment a biopsy of her tumor was taken, without her consent, and her cells proved remarkable. The never died. They led to hundreds, if not thousands, of important medical discoveries and still aren’t done.

The book does a good job of describing the science, but does a better job of describing Henrietta and her family--her family who never knew the cells were taken. Who first learned about it when researchers came, years later, asking for blood from them—without explanation. Who didn’t have the education to understand how part of their mother could still be alive somewhere.

At the time the medical researchers adhered to the standards of the day which did not include consent, informed or otherwise. A lot has changed since then.

As a doctor I have to be careful who I tell what about each patient, and where I mention it. My aunt tells the story of sitting next to a psychiatrist on a bus who called in a medication for a patient using the patient’s full name. Definitely not HIPAA compliant.

As a sister, my parents and I had to make medical decisions for Eric without necessarily knowing what he would want. We had to decide to let him undergo surgery. We had to decide to withdraw care. We had to decide to make him an organ donor. I am still comfortable with all of the decisions we made, but none of them were easy.

When the neuro-surgeon called to discuss surgery I was naked in the shower getting ready to get on the plane to Las Vegas. I turned the water off and stood there shivering; feeling like my whole body was dripping tears as I learned about Eric’s condition. Technically, the neuro-surgeon probably shouldn’t have spoken with me since I was not his next of kin (my parents were), but he made a judgment call and I think it was the right one. He also spoke with my parents and we spoke with each other so we were all able to be involved.

When we got to Las Vegas we learned that not only had the surgery not helped Eric’s condition, but that they had to remove parts of his brain. That actually made the withdrawing care decision easier. Eric without his brain would not be Eric and would not want to live that way. Eric would never be coming back.


The decision to donate Eric’s organs seemed right to me. It’s what I would want if I ever end up in that situation. Later we found Eric’s driver’s license which listed him as an organ donor, so I know he was ok with that decision too.

Making medical decisions for loved ones is not easy. As a doctor making sure the people making the decisions are the right people and understand what they are doing is also not easy. Confidentiality is important, even critical in some situations, but maybe should be more flexible in others. Laws aren’t flexible, they can’t be. So we have to rely on our own judgment and hope no one calls us on it.

Should Henrietta Lacks’ family have been told about her cells? I don’t know. Should she have been consented about the procedure and told that her cells may be used for research? Definitely. But I’m answering that in today’s world and it’s a very different world from 1951, in many ways because of her cells.