Neurodevelopmental Conditions: Ethics, Parental Decisions, and Children’s Identities
Erin Turbitt, Ainsley J. Newson, Barbara B. Biesecker, Benjamin S. Wilfond
An increasing number of clinical trials involve drugs that target genetic conditions with behavioral and cognitive impairments, such as autism spectrum disorder and fragile X syndrome. As a result, more parents of children with these conditions will face the difficult decision about whether to enroll their children in the trials. This article considers important ethical issues raised by this research that parents should consider. For example, as new drug treatments aim to target the underlying mechanism of genetic neurodevelopmental conditions, parents may be concerned about the loss of positive aspects of their child’s condition, such as their child’s unique personality. The authors recommend ways to improve the consent and recruitment process, but conclude that “parents will still (with appropriate support) need to reflect on their own values and perceptions about whether treatments targeting the underlying mechanism of genetic neurodevelopmental conditions could impact their child’s personhood and on their level of comfort around that notion.”
Also in the July-August 2021 issue:
Online Research Participant Communication: Balancing Benefits and Risks Luke Gelinas, Walker Morrell, Sarah A. White, Barbara E. Bierer
Developing Biopsychosocial Research on Maternal Mental Health in Malawi: Community Perspectives and Concerns Lucinda Manda-Taylor, Eric Umar, Robert C. Stewart, Macdonald Kufankomwe, Genesis Chorwe-Sungani, Owen C. Mwale, Demoubly Kokota, Joyce Nyirenda, Kazione Kulisewa, Martyn Pickersgill
An Argument for Reinterpreting the Benign Behavioral Intervention Exemption Ian Tully
The Inevitability and Ethics of Inaccurate Screening in Clinical Trials: A Call for Research and Guidance David Wendler
For more information, contact:
Susan Gilbert
Director of Communications
The Hastings Center
gilberts@thehastingscenter.org
845-424-4040 x 244
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Journal
IRB Ethics and Human Research
Method of Research
Content analysis
Subject of Research
People
Article Title
Ethics & Human Research, July-August 2021
COI Statement
none