Science and Consent

[Trigger warning for general consent issues.]

This is a genuinely fascinating TED presentation (for which I've searched unsuccessfully for a transcript) given by Professor Deb Roy, who, with his wife, Professor Rupal Patel, taped over 200,000 hours of audio and video of their home environment during the first three years of their son's life, thus amassing a massive dataset unlike anything else available to researchers working on language development.

The incredible value of this project is indisputable. I am thrilled by the mere thought of it and intensely curious about the findings, which will trickle out over years of study.

But I'm also deeply uncomfortable about the inherent consent issues—namely that Roy's son was incapable of giving his consent to participate.

Obviously, we imbue parents with the right to consent for infants/children, because they cannot understand why they must get a shot in the arm that hurts to prevent the contraction of a deadly disease (as but one example). Primarily, we give parents the right to proxy consent for things that must happen immediately—medical care, starting school at a developmentally appropriate age, etc.

So, I get that Roy and Patel couldn't wait until their son was old enough to give informed consent to record his language acquisition. By the very nature of what they wanted to record, recording necessarily pre-dates the ability to consent.

I also understand that Roy and Patel quite obviously wanted to immediately begin analyzing the data, because it is of both personal and professional interest. And though they stand to potentially profit from the findings, by virtue of Roy's role as CEO of Bluefin Labs, I believe they have an authentic interest in developing better strategies for language impairments and related disabilities, too.

But. Did that have to begin now? Surely it possible to hold the data until its child subject was old enough to consent to have the data processed by strangers? Were there compelling reasons to do otherwise? Do whatever pressing reasons for releasing the data to researchers now trump the child's right to privacy and right of consent?

I don't pretend to have definitive answers to those questions.

Roy explains: "With many privacy provisions put in place to protect everyone who was recorded in the data, we made elements of the data available to my trusted research team at MIT so we could start teasing apart patters in this massive dataset, trying to understand the influence of social environments on language acquisition."

And I appreciate and respect that. But privacy and consent, while inextricably linked, are not the same thing.

I'm not convinced there exist any valid reasons for scientific experimentation, invasive or passive, to trump consent. I'm well aware that many arguments to that end have been made, to justify everything from the Tuskegee Experiments and experiments on Guatemalan prisoners and patients (among others), to medical school examinations on unknowing surgery patients, to experimental surgeries on intersex infants. Suffice it to say, that history doesn't make me more inclined to believe that science can/should ever trump consent.

Discuss.