At 1Day, we’re working on trying to bring about safe, efficient human challenge studies to realize a hepatitis C vaccine. We’ve made great progress and it looks like they will begin within the next year! But the last time people did viral hepatitis human challenge studies, they did them on mentally disabled children! Just heinously evil.
Based on the article you linked, it sounds like the parents of the disabled children consented to the challenge trial, and they received something valuable in return (access to a facility they wouldn’t otherwise have access to). Is your objection to the use of disabled children in studies at all, or to the payment?
(The article also makes it seem like the conditions in the facility were poor, but that seems basically unrelated to the trial).
Yes, the studies should not have used disabled children at all, because disabled children cannot meaningfully provide consent and were not absolutely necessary to achieve the studies’ aims. They were simply the easiest targets: they could not understand what was being done to them and their parents were coercible through misleading information and promises of better care, which should have been provided regardless. (More generally, I do not believe proxy consent from guardians is acceptable for any research that involves deliberate harm and no prospect of net benefit to children.)
The conditions of the facility are also materially relevant. If it were true that children inevitably would contract hepatitis, then a human challenge would not be truly necessary. More importantly, though, I am comfortable calling Krugman’s behavior evil because he spent 15 years running experiments at an institution that was managed with heinously little regard for its residents and evidently did not feel compelled to raise the issue with the public or authorities. Rather, he saw the immense suffering and neglect as perhaps unfortunate, but ultimately convenient leverage to acquire test subjects.
Based on the article you linked, it sounds like the parents of the disabled children consented to the challenge trial, and they received something valuable in return (access to a facility they wouldn’t otherwise have access to). Is your objection to the use of disabled children in studies at all, or to the payment?
(The article also makes it seem like the conditions in the facility were poor, but that seems basically unrelated to the trial).
Yes, the studies should not have used disabled children at all, because disabled children cannot meaningfully provide consent and were not absolutely necessary to achieve the studies’ aims. They were simply the easiest targets: they could not understand what was being done to them and their parents were coercible through misleading information and promises of better care, which should have been provided regardless. (More generally, I do not believe proxy consent from guardians is acceptable for any research that involves deliberate harm and no prospect of net benefit to children.)
The conditions of the facility are also materially relevant. If it were true that children inevitably would contract hepatitis, then a human challenge would not be truly necessary. More importantly, though, I am comfortable calling Krugman’s behavior evil because he spent 15 years running experiments at an institution that was managed with heinously little regard for its residents and evidently did not feel compelled to raise the issue with the public or authorities. Rather, he saw the immense suffering and neglect as perhaps unfortunate, but ultimately convenient leverage to acquire test subjects.