News Release

Ethics & Human Research, May-June 2023

Advance research directives, research participation lottery, and more

Peer-Reviewed Publication

The Hastings Center

Making an Advance Research Directive: An Interview Study with Adults Aged 55 and Older with Interests in Dementia Research

Nola M. Ries, Briony Johnston

Many people with dementia are interested in taking part in research, including when they no longer have capacity to provide informed consent. Advance research directives (ARD) enable people to document their wishes about research participation prior to becoming decisionally incapacitated. However, there are few available ARD resources. This Australian interview study elicited the views of people aged 55 years and older about the content of an ARD form and guidance booklet and processes to support research planning. Participants had interests in dementia research. All participants described the ARD materials as easy to understand, and all expressed willingness to take part in future research. Nearly half believed that an ARD should be legally enforceable, while others saw it as a nonbinding document to guide decisions about their participation in research. Close family members were preferred as proxy decision-makers. The ARD form and guidance booklet may be adapted for use elsewhere.

 

Offering Lottery Entry as an Incentive for Research Participation Compromises Informed Consent

Simon Paul Jenkins

This paper argues that offering entry into a lottery as an incentive to those who participate in research studies represents a challenge to the principle of informed, coercion-free consent that is considered an essential ingredient of permissible recruitment to studies. This is, first, because information about the chances of winning in this context is normally unavailable to potential participants and, without this, they cannot accurately weigh up the risks and potential benefits of participation. Second, even when this information is available, such an incentive capitalizes, I contend, on the difficulty of weighing up small probabilities, exploiting the fact that people tend to be beset by cognitive biases that make it challenging to make decisions rationally. The resulting conclusion is that we should not view lotteries as more ethical than simply paying participants, when the latter is feasible.

 

Also in this issue:

A Competency Framework for Health Research Ethics Educational Programs: Results from a Stakeholder‐Driven Mixed‐Method Process

Sean Tackett, Chirk Jenn Ng, Jeremy Sugarman, Esther Gnanamalar Sarojini Daniel, Nishakanthi Gopalan, Tivyashinee, Adeeba Kamarulzaman, Joseph Ali

 

Translational Bioethics and Health Privacy

Mark A. Rothstein

 

Table of Contents • Advance research directives • Translational research ethics: Ethics & Human Research: Vol 45, No 3 (wiley.com)

 

For more information, contact:

Susan Gilbert

Director of Communications

The Hastings Center

845-424-4040 x244

gilberts@thehastingscenter.org.

 


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