A correspondent—who is a disability rights activist—alerted me to SB 1142, a proposal in Virginia to overhaul its law concerning advance directives. There are several things in the bill that concern me, but she wrote worrying that it would open the door to experimenting on the incapacitated and the dying.
She is right—the bill authorizes signers of advance directives who become incapacitated to be experimented upon if the named surrogate decision maker consents—even if the experiments are not intended to provide them any help at all. From the bill:
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.Adding to the concern, if the patient is terminally ill, an advance directive may be established orally:
Further, any competent adult capable of making an informed decision who has been diagnosed by his attending physician as being in a terminal condition may make an oral advance directive to authorize the providing, withholding or withdrawing of lifeprolonging procedures or to appoint (i) directing the specific health care the declarant does or does not authorize in the event the declarant is incapable of making an informed decision, and (ii) appointing an agent to make health care decisions for the declarant under the circumstances stated in the advance directive if the declarant should be determined to be incapable of making an informed decision.My correspondent notes that the form language permitting experimentation is the default setting—there isn’t a check box to indicate yes or no in the suggested form. Unless the creator scratches the provision out, he or she is authorizing him or herself to be the subject human experimentation. Since some people will surely see the text as mere boilerplate or might not understand the import of the words, they might not know that they had consented to be experimented on while incapable or dying.
This provision explicitly violates the Nuremberg Code that requires subjects of human experimentation be capable of consenting to—and have complete understanding of—the experiment in which they participate. From the Code:
The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice,...and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.The Nuremberg Code isn’t legally binding, but its precepts are proper guidelines to follow. The substitute decision making to allow experimentation aspect of this bill should be removed since by definition, a person for whom decisions are being made consistent with an advance directive is incapable of giving truly informed consent to participate. A nebulous general assent ahead of time of the kind allowed in the bill doesn’t cut it.
Thanks very much to my correspondent for bringing this important matter to my attention.
