A bill currently being considered by the Virginia State Senate could authorize experimentation on incapacitated and dying humans, say disability advocates and bioethics experts.
Virginia Senate Bill 1142 would overhaul Virginia's existing law concerning advance directives, also known as living wills. SB 1142 states, in part:
"Section: 54.12983.1. An advance directive may authorize an agent to approve participation by the declarant in any health care study approved by an institutional review board pursuant to applicable federal regulations, or by a research review committee pursuant to Chapter 5.1 (§ 32.1123 et seq.) of Title 32.1 that (i) offers the prospect of direct therapeutic benefit to the declarant, or (ii) aims to increase scientific understanding of any condition that the declarant may have or otherwise to promote human wellbeing, even though it offers no prospect of direct benefit to the patient."
In addition, the bill would authorize terminally ill patients to make an advance directive orally, rather than in writing. It does not specify how this directive would be verified, nor what should be done if a patient makes two oral directives that contradict one another or specify different agents permitted to make health care decisions for the patient.
According to bioethics blogger Wesley J. Smith, this proposition directly violates the Nuremberg Code, a code of ethics governing human experimentation which specifically requires that human subjects be capable of consenting to the experiment in which they participate. The Nuremberg Code also mandates that human subjects be capable of fully understanding the experiment.
In addition, one Virginia advocate says the Virginia advance directive form has language permitting experimentation as the default, unless otherwise specialized. According to Smith, Unless the creator scratches the provision out, he or she is authorizing him or herself to be the subject of human experimentation.
What do you think? Do the potential benefits of increased experimentation outweigh the risks? Would you want the person (if any) who holds your medical power of attorney to be able to consent to your participation in medical experiments?
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Filed under: abuse, disability rights, living wills, nuremberg code, virginia, human experimentation, terminal illness, medical power of attorney, experimentation, advance directives, bioethics
