Making Research More Ethical for Adults with Fetal Alcohol Spectrum Disorder

Author:

Aspler John

Abstract

In this chapter, the author reflects on challenges associated with conducting focus group interviews with adults with fetal alcohol spectrum disorder (FASD)—a complex neurodevelopmental disability caused by alcohol exposure in utero. Given the heterogeneity of this diagnosis, people with FASD have different strengths and weaknesses. Therefore, for effective and ethical research inclusion, each person with FASD may need unique accommodations, which can help to both minimize concerns about unjust research exclusion and mitigate sources of vulnerability. To explore these issues, the author describes the focus group study, presents anticipated risks and challenges, explores critical stakeholder feedback, and addresses ethical tensions arising from the resulting protocol adjustments. This chapter demonstrates the importance of researchers remaining open to criticism and being willing to work through their moral discomfort.

Publisher

Oxford University Press

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