Looking for volunteers! We want to hear from adults with FASD about their successes at work

We’re doing a study with the University of Alberta to look at employment successes of adults with FASD.

There are two parts to the study:

  1. A short survey. This can be completed on the phone, online, or on paper.
  2. A video. We will be taking short clips of people talking about their successes at work. This part of the study is optional.

Are you coming to the International Conference on FASD in Vancouver this March? 

We are hoping to find volunteers to complete the study at the conference. We welcome service providers, caregivers, and adults with FASD to visit Dr. Jacqueline Pei or Dr. Katy Flannigan at the CanFASD conference booth for more information. You can also contact Katy (katy.flannigan@canfasd.ca) any time if you have questions before the conference. Hope to see you there!

We’ll have another post up soon with information about how to do the study if you are not coming to the Vancouver conference.

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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.

Top FASD Articles of 2016

CanFASD staff, researchers, and Family Advisory Committee members worked together in selecting certain articles to highlight some of the work that has been published over the last year in the field of FASD. Over 230 FASD papers published in 2016 were narrowed down to a final list of 30 that focus on CanFASD’s areas of emphasis in FASD prevention, intervention, diagnosis, social justice, child welfare, and family collaboration. Additional consideration for what constituted the “top” articles included: generalizability to Canadians, influence on practice or policy, novelty, scientific rigour, and media attention. Click this link for a PDF version of the document.

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Welcome to CanFASD Connect!

The Canada FASD Research Network (CanFASD) is pleased to announce our new blog, CanFASD Connect. We’ve created this space for sharing research and policy about FASD, and engaging and interacting with our partners and followers about important issues in the field. Join us each week to read about newly published FASD research, book reviews, researcher profiles, program highlights, and more.

For our first post, we have a message from CanFASD Board Chair Tim Moorhouse:

I am pleased to announce that Audrey McFarlane has been appointed by the Board of Directors as the Executive Director of CanFASD. Audrey has been in the position of interim Executive Director since November of 2015. Audrey has provided significant leadership and support while the Network worked through several areas of development and growth. Audrey is a familiar person to many individuals and organizations across Canada in relation to her professional and personal work in FASD. This has included several years as a member of the CanFASD Board of Directors.

Audrey is well known for her knowledge, experience and leadership in the field of FASD, and her ability to work with a broad range of community based organizations and all levels of government. Audrey’s work as Executive Director to date has proven to be exceptional in providing administrative leadership to the organization and high quality support to the Board, our Committees, and researchers.

I would like to express my appreciation for the work that Audrey has done over the past 14 months. On behalf of the Board of Directors, we greatly anticipate working with Audrey as we continue to move forward as an organization in support people living with FASD, their families and caregivers, communities, practitioners and policy makers.

Sincerely,

Tim Moorhouse

Chair, Canada FASD Research Network

In upcoming posts we will share CanFASD’s selections for the “Top FASD Articles of 2016” and discuss a new article, Ethical Challenges in Contemporary FASD Research, published in Cambridge Quarterly of Healthcare Ethics.

Thank you for visiting and feel free to send us your feedback about what you’d like to see featured on the blog. You can get in touch by commenting or using the Contact Us form.