By Andy Burman, PRIM&R Blog Squad member
A few weeks ago, I had the unfortunate experience of becoming a crime victim. Upon arriving home from work, I discovered that someone had broken into my home during broad daylight and rifled through the belongings that I share with my wife and newborn son.
Since discovering the break-in, I’ve felt a couple of emotions. After the initial blast of fear, I was simply thankful. No one was home, and thus no one was hurt. The thieves didn’t take much and were relatively neat while they did their business. It could have been so much worse. However, over time I started feeling angry. It took me a week to rationalize why I was angry and once I formulated the sentence, I couldn’t believe the explanation was so simple and paralleled so closely to our field of research.
They entered my home without my consent.
I think that we all could agree that breaking into someone’s home and taking what you want is a criminal and amoral act. But what happens if we change a few words in the above sentence? What if I replaced the word “entered” with the word “took,”and placed “tissue” in lieu of “home” before adding the phrase “for the purposes of medical research”?
They took my tissue, for the purpose of medical research, without my consent.
Is this a criminal act? Is this amoral? What about taking my data without my consent, or my taking my discarded tissue without consent? Are any of these scenarios criminal or lacking morality? Why are some legal, and some not? If it’s legal, is it still moral? Things get complicated fairly quickly.
Many people may be familiar with a book by Robert Fulghum entitled All I Really Need to Know I Learned In Kindergarten where he enumerates the life lessons he learned in kindergarten. Between “clean up your own mess,” and “say you’re sorry when you hurt somebody,” lies the rule “don’t take things that aren’t yours.” Wouldn’t it be nice if this was the standard across every institution and agency in the field?
Having read The Immortal Life of Henrietta Lacks, I have no doubt that scientist George Gey had good intent when he took Henrietta’s tissue sample and without her knowledge grew and distributed HeLa cells. Similarly, I have no doubt Robin Hood had good intentions when he stole from the rich and gave to the poor. Despite their intentions, one could argue that they both took something that was not theirs and, thus, instead of becoming a great scientist or a great humanitarian, both simply became thieves.Research subjects should never feel victimized by researchers. They can’t feel like the researcher has violated their figurative home and stolen their belongings, because the researcher didn’t inform the subject accurately. Subjects deserve better. They deserve our honesty. They deserve our morality. They deserve full and thorough informed consent.
It takes time. It takes education. It takes patience. It takes the ability to listen.Failure to do any of the above is almost criminal. It’s a crime not worthy of researchers, merely thieves.