Article Summary: Ethical Challenges in Contemporary FASD Research

In this series, we summarize newly published research articles about FASD for the readers of CanFASD Connect. Please contact us to request a topic and we will look for articles that fit your interests. 

Ethical challenges in contemporary FASD research (2016)

Authors: Nina Di Pietro, Jantina De Vries, Angelina Paolozza, *Dorothy Reid, James Reynolds, Amy Salmon, *Marsha Wilson, Dan J. Stein, & Judy Illes

*Dorothy Reid and Marsha Wilson are members of the CanFASD Family Advisory Committee.

Journal Information: Cambridge Quarterly of Healthcare Ethics, 25, 726-732

The authors present several ethical challenges affecting FASD research and practice across the world, highlighting the fine line often toed by researchers, practitioners, and community members working in the field. Here are some of the key issues they present, framed as questions so that you might consider your role in meeting these challenges.

  1. Duty and responsibility
    • How do we respect different community and religious backgrounds and beliefs about autonomy, decision-making, safety and risk, wellness, and illness while acknowledging that deeply rooted rituals and beliefs, including drinking circles, may be harmful to an individual’s health outcomes?
    • How do we maintain trust and relationships and protect vulnerable children and women?
    • How can we establish beverage labelling?
  2. Justice
    • How do we establish wider surveillance systems to gather accurate information about FASD incidence and prevalence and connect these surveillance activities to intervention services?
    • How do we collaborate with international countries, especially low- and middle-income countries, and ask questions that are relevant to high-income contexts and address local problems?
    • How do we communicate an FASD diagnosis to an individual, family member, or child in a way that reduces potential harm and maximizes potential benefit?
  3. Respect for persons
    • How do we ensure that research participants who have FASD (and may have cognitive limitations that impact their ability to understand the implications of participating in research) are fully informed about a study before giving their consent?
    • How do we work toward early diagnosis through active surveillance and manage potential stigmatization of families of children with FASD and women with alcohol-related problems?

The authors raise these ethical considerations to stimulate  discussion and provide direction on critical next steps in the field. So, let us discuss.

  • Which of these challenges are most relevant to you or someone you know in your life and work?
  • How do these challenges impact you in your life, and how do you approach them?
  • How does the program or organization you work for manage some of these trade-offs?

Please share your thoughts with us in the comment section below.

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