New in Ethics & Human Research, November-December 2022 issue

Ethical Frameworks for Disclosure of Alzheimer Disease Biomarkers to Research Participants: Conflicting Norms and a Nuanced Policy

Eline M. Bunnik , Marthe Smedinga , Richard Milne , Jean Georges , Edo Richard , Maartje H. N. Schermer

More and more frequently, clinical trials for Alzheimer disease (AD) are targeting cognitively unimpaired individuals who are at increased risk of developing the disease. It is not always clear whether AD biomarker information should be disclosed to research participants: on the one hand, they may be interested in learning this information because of its perceived utility, but on the other hand, learning this information may be harmful, as there are very few effective preventive or therapeutic options available for AD. The authors suggest policies for the disclosure of AD biomarker test results in longitudinal observational cohort studies, clinical trials, and hybrid research projects. They also present and critically discuss recommendations for disclosure of AD biomarkers in clinical practice. The authors underscore that, as long as the clinical validity of AD biomarkers remains limited, there are good reasons to avoid disclosing them to cognitively unimpaired research participants.

Also in this issue:

Participants’ Perspectives on Payment for Research Participation: A Qualitative Study

Emily A. Largent , Whitney Eriksen , Frances K. Barg , S. Ryan Greysen , Scott D. Halpern

Case Study

Challenges and Possible Solutions to Adapting to Virtual Recruitment: Lessons Learned from a Survey Study during the Covid-19 Pandemic

Krista E. Cooksey , Jessica Mozersky , James DuBois , Lindsay Kuroki , Christine M. Marx , Mary C. Politi

Articles

Demonstration Project: Transitioning a Research Network to New Single IRB Platforms (Open Access)

Jeri S. Burr , Ann Johnson , Annie Risenmay , Stephanie Bisping , Emily S. Serdoz , Whit Coleman , Katherine A. Sward , Erin Rothwell , J. Michael Dean

Essay

Is Russia's Research Ethics Culture Reliable?

Sergio G. Litewka, Jonathan D. Moreno