Advance consent, critical interests and dementia research

Tom Buller

doi:10.1136/medethics-2014-102024

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Advance consent, critical interests and dementia research

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Re "Advance consent, critical interests and dementia research"
Heather Zelle
Published on: 27 August 2014

Published on: 27 August 2014
Re "Advance consent, critical interests and dementia research"
- Heather Zelle, Mental Health Law Fellow
- Other Contributors:
  Richard J. Bonnie
Formulating the desire to consent in advance to research as a critical interest is a valuable addition to the literature on consent to research by incapacitated individuals. As Dr. Buller notes, much attention has been paid to these concerns in the literature and many states have enacted statutes protecting human research subjects. States vary in how thoroughly they treat the topic, with some carefully defining who ma...
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Formulating the desire to consent in advance to research as a critical interest is a valuable addition to the literature on consent to research by incapacitated individuals. As Dr. Buller notes, much attention has been paid to these concerns in the literature and many states have enacted statutes protecting human research subjects. States vary in how thoroughly they treat the topic, with some carefully defining who may provide proxy consent to research under what circumstances, while others provide virtually no guidance on proxy consent. What is interesting to note given Dr. Buller's article, though, is that proxy- focused approaches using human subjects research laws fall short of providing health care recipients the ability to affirmatively assert their right to consent to research--to express their critical interest in research participation in a legally binding format.
Dr. Buller notes that advance research directives have not gained wide support, yet documenting one's consent to research in advance is arguably the most patient/participant-centered and empowering way to document one's critical interest in participating in research. A relatively recent change in Virginia's Health Care Decisions Act warrants attention on this point. Virginia appears to be the only state that has codified the possibility of advance consent to research and has included consent to research explicitly among the powers of a designated health care agent. Some states, such as California, note in human subjects research laws that an agent may consent to research if such power has been granted in an advance directive, but the separate statutory language concerning advance directives does not make any mention of including preferences and instructions regarding research in advance directives.
In contrast, Virginia explicitly authorizes consent to research in an advance directive (Va. Code s 54.1-2983.1. http://leg1.state.va.us/cgi- bin/legp504.exe?000+cod+54.1-2983.1) and also includes the power to consent to research among the agent's powers on the model form (Va. Code s 54.1-2984. http://leg1.state.va.us/cgi-bin/legp504.exe?000+cod+54.1-2984; see also the "Integrated AD Form" http://www.virginiaadvancedirectives.org/option-1--integrated-ad.html). Moreover, recognizing that people may feel differently about research depending on whether it may offer a direct benefit to them or not, the power to consent is described in two separate provisions so that people may opt to choose both, one, or neither. As with any other "default powers" in a Virginia form, the two powers may certainly be struck through, and users of the form are made aware of this at the beginning of the list of powers.
Virginia has well-developed human subjects research laws, as well, which can control when no advance directive is available. Nonetheless, the right to consent to research as a critical interest can be best exercised through affirmative documentation in an advance directive, rather than through a proxy's inferences about a patient's desire to take part in research after he or she has lost capacity. Virginia has recognized the importance of providing mechanisms for people to consent in advance to research and incorporates research provisions directly into its Health Care Decisions Act.
Conflict of Interest:
None declared
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Conflict of Interest:
None declared.
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