Corporations Are Patenting Human Genes and Tissues -- Here's Why That's Terrifying
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And then of course medical research conducted by private corporations or in which private corporations pay medical institutions to conduct research according to the corporations' dictate, which means they control it. So one thing they have begun doing is exploiting a 1996 law that governs medical research, which says that if you are in the United States and you're the victim of a trauma -- shot in the chest, a heart attack, hit by a car -- medical research can be conducted on you without your permission.
I have spoken to research subjects who had no idea that they were used in medical research until a member of their family told them. We all expect that we're going to be offered informed consent. In medical research, this is an exception.
BJ: Is there any legislation you know of today that is being introduced to address these issues?
HW: I know of no legislation that is being promoted or that even has been suggested. I think it's because so few members of the public even know it's going on. You can't fight something if you don't know it exists. And I find it really interesting that, although a few medical journals have called me and interviewed me about this, it's not being published someplace where a great many people will read it.
I wrote an article for a magazine -- and I'll be prudent and I won't name it -- a popular magazine with a very large circulation. They said they loved the article, they'd love to publish it, right up to the moment where I got a phone call saying they were killing it and then they paid me for it anyway.
BJ: And what about the "consensual" situation, when a patient is made to sign a consent form right before going into surgery? That might be legal, but it's also very misleading, no?
HW: That's consensual. But the legality of doing this is actually kind of shadowy. I don't think it's been well established whether it's legal or not to take somebody's tissues in surgery without asking their permission first. So what happened is researchers and corporations had decided to cover themselves by getting people in this scenario to sign a consent form and the difficulty, as you suggested, is whether people really understand what they're signing.
But the piece of paper, the consent form, is not informed consent. If you have a signed consent form in a file and you go to court, that's not proof of informed consent. That's only one piece of evidence to support your claim that you informed the person. Actual informed consent is an ongoing process between the researcher and the subject. You have to not only tell them all the information about the study, about what's known about the consequences, but also if new information emerges you have to keep the person apprised of that. That's informed consent.
What they're doing is they're having signed a consent form to try to prove that they've given these people informed consent. But the truth is, you know, if you're a hospital patient and it's six o'clock in the morning, and you're still groggy from your sleeping medication from the night before, you're woken, handed a sheet of forms to sign for surgery you presumably need and there are staff people standing around you...that's not conducive to informed consent.
Most patients don't read it, but that's kind of logical. You know, you need this surgery. The last thing you want to do the second before you go under the knife is antagonize the people who are doing your surgery.