Medical Ethics and Human Experimentation: Why I Take it Personally

As the survivor of a medical experiment, I'm biased about bioethics.

Back in 1951, treatments for congenital hip dysplasia weren't as advanced as they are now, but they existed.

'That Hurts, Doesn't It?

My parent's family doctor noticed that I screamed when he rotated my hips, and said something like 'that hurts, doesn't it?'

Some time later, when my parents noticed that I had trouble rolling over - and wasn't very good at crawling - they found out that I had congenital hip dysplasia. That's a five-dollar term meaning that my hips hadn't grown correctly.

Months in a sort of brace didn't have much effect, and so a surgeon went in, took bone from my femur and sculpted a hip socket for my left hip. The right socket was definitely not up to specs, but was good enough to leave alone. That operation got me to the point where I could learn to walk, so I was able to walk back into the hospital a few years later, when something went wrong with my left hip.

Neither of the operations, or the physical therapy, were a medical experiment. I'm getting to that.

Medical Research, an Enraged Irishman, and a Grim Daughter of the Vikings

My father was head librarian at a college, and could get himself assigned to the reference desk from time to time. He enjoyed being able to connect students with information they needed. When he wasn't doing that, he had time to read a book or periodical from the shelves.

One day, he was going through a medical journal. One of the articles' title read something like "Effects of Delayed Treatment on Congenital Hip Dysplasia." He recently told me that, as he read the author's name, and the article, and realized what the good doctor had done, it felt like the top oh his head had come off.

Before he got to the doctor, my mother discussed the matter with him. He returned to his duties at the library. She made an appointment with the doctor.

During that appointment, I presume that she discussed the matter of congenital hip dysplasia, certain aspects of medical research, and her son. I understand that she did not speak - ever - of what happened in that room.

It might have been more merciful, in a way, to let an enraged Irishman get at the doctor - instead of five-foot-nothing of concentrated viking determination.

Shortly after the interview with my mother, the doctor's office quietly announced that he was taking an indefinite leave of absence. We never heard of him again.

I have no idea what my mother planted in his brain. She was a highly intelligent woman with a will of cold iron that did credit to our viking forebears. Whatever she gave him, I hope he took advantage of the experience, and reconsidered his views on medicine, people, and research.

Artificial Hips: These Things are Great!

I've got two new hip sockets now. They're artificial, and don't work as well as most people's original equipment.

But they're a lot better than what I'd been working with for a half-century. I've got what for me is an astonishing range of movement for both legs. Best of all, I can stand, sit, walk, lean, lie down, turn, or stay still: and not hurt. I realize now that what I'd decided to regard as "discomfort" was pain.

A Half-Century of Pain: Yes, it's a Blessing

Once in a while, I wonder what it would have been like to have gotten treatment when the doctor noticed what was wrong with my hips. It's possible that the two operations wouldn't have been needed, and that I'd have avoided quite a bit of unpleasantness.

On the other hand, I wouldn't have

• Learned how to deal with discomfort (I yelled a lot - but I also learned to accept what I had, and keep going).
• Been able to tell a couple of mouthy kids, "it's a [expletive] of a young age to lose your legs." Their (sister, I think) had been trying, unsuccessfully, to convince them that what they were doing in a subway station wasn't prudent. The way I looked, and walked, and my cane, may have given credibility to my observation. They moved to safety.
• Had experiences I could share with a young man who was experiencing intense self-pity. He'd been in a motorcycle accident, and wasn't able to walk as well as he had before: a genuinely rough experience for someone who's used to being somewhat athletic.
• Had the opportunity to forgive the doctor who apparently thought of me as a large, noisy, lab rat.

About forgiving that doctor and his little experiment: yes, I forgive him; no, I'm not being 'spiritual,' or some other nonsense.

I have to forgive him. It's in the rules. Besides, I've got enough troubles as it is, without keeping a grudge that'll hurt me more than it does him.

Bioethics: With Me, it's Personal

I also have to forgive people who want to grow clones for their parts, or as experimental subjects. That doesn't mean that I can't feel a bit more personally involved in bioethics than some do.

I know, from personal experience, what a relatively benign experiment can do to a person. I accept what happened to me as an opportunity to learn and grow: but I wouldn't wish it on anybody else.

Related posts:

• "Human Clones Possible: Don't Worry, They're Just for Parts and Research"
  (February 2, 2009)
• "Chantix and Veteran's Affairs: Who Needs Consent? We Got 'Em, Let's Dose 'Em"
  Another War-on-Terror Blog (June 17, 2008)
  particularly
  • "People as Lab Animals: a Personal View"