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Making Research More Ethical for Adults with Fetal Alcohol Spectrum Disorder: A Story of Stakeholder Engagement, Accommodation, and InclusionA Story of Stakeholder Engagement, Accommodation, and Inclusion
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.
Background
People with fetal alcohol spectrum disorder (FASD) and women who drink alcohol while pregnant can experience stigma, possibly exacerbated by stereotyped media portrayals.
Method
To understand experiences of FASD stakeholders and reactions to news coverage, we conducted twelve focus groups across three categories: (1) people with FASD; (2) caregivers; and (3) professionals. Themes were identified using framework analysis.
Results
We identified stereotypes about: (1) FASD (e.g., negative life trajectories); (2) alcohol and pregnancy (e.g., bad mothers); and (3) non-biological caregivers. Participants identified potential effects of FASD stereotypes (e.g., self-fulfilling prophecies) and alcohol and pregnancy stereotypes (e.g., exacerbating difficult decisions about disclosing a child’s adoptive status).
Conclusions
Our results align with research about difficult experiences of FASD stakeholders. However, while Canadian news analyses found people with FASD portrayed as criminals, our participants identified mostly non-crime stereotypes. Participants also sometimes shifted the burden of motherhood stereotypes from low-income to higher-income women.
History of Diagnosing FASDHow Does Prenatal Alcohol Exposure Cause Damage?Screening for FASDThe Diagnostic ProcessFASD Across the LifespanImplications of a Diagnosis of FASDConclusion and Future DirectionsPolicy ConsiderationsReferences
Can Moral Problems of Everyday Clinical Practice Ever Be Resolved? A Proposal for Integrative Pragmatist Approaches
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