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About the Institute

Profile of Randi Zlotnik Shaul

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Randi Zlotnik-Shaul

 By: Hannah Sunderani

Dr. Randi Zlotnik Shaul JD, LL.M, PhD

  • Director, Bioethics
  • Associate Scientist, Child Health Evaluative Sciences
  • Associate Professor, Department of Pediatrics, Joint Centre for Bioethics, University of Toronto

1. Where are you from?/Where did you study?
I am from Montreal, Quebec. I did my undergraduate degree in political science at McGill University. From there, I moved to Toronto to study law at Osgoode Hall Law School. After completing my training I worked for the Legal Services Branch of the Ontario Ministry of Health and Long-Term Care. While I was there, I became very interested in issues related to priority setting and resources allocation. I was particularly concerned about the challenges that the ministry faced in choosing amongst groups and initiatives that could benefit from resources when there were limited resources to go around.

This interest brought me back to school where I did my Master of Laws degree at the University of Toronto, Faculty of Law. Through that research, I gained a greater appreciation for how complex issues related to priority setting and resource allocation are, so I continued on to do a PhD on the subject at the Institute for Medical Science, U of T. After that degree, I did a post-doctoral fellowship through the Bioethics Department at SickKids. During my post-doc, I was hired as a bioethicist at SickKids and have now been with the Hospital for over 13 years.     

2. What are you researching right now?
I have a couple exciting projects on the go right now. A consistent feature of all the projects I take on is that the research questions engage the fields of ethics, healthcare and law. I have a grant with a fantastic interdisciplinary group of researchers who are beginning to empirically examine child and parent perceptions/expectations regarding whole genome sequencing (WGS), their experience with the consent process as well as clinician expectations/challenges regarding WGS. WGS is a laboratory process that determines the complete DNA sequence of an organism’s genome. The plan is to use the data from the study to develop evidence-based best practices for obtaining informed consent for WGS. We also hope to have the data inform the development of educational materials for families and healthcare providers to facilitate active engagement in the WGS testing process. We hope this work will enable patients/families and practitioners to maximize the utility of WGS to improve health and well being and minimize its implicated risks.

I also just finished editing a book that discusses ethical and legal issues related to the application of two distinct models of providing healthcare in a paediatric setting. The book focuses on the models: patient-centred care and the family-centred care. The patient-centred care model reflects concepts we find in law whereby the fiduciary responsibility of health care providers requires that they act in the best interest of their individual paediatric patients. The model of family-centred care highlights the benefit to a paediatric patient of considering family context and values. In this book 30 authors from across Canada examine the tensions and synergies between the models in a large number of clinical settings. The book will be in press early next year and its upcoming publication seems to have already generated a lot of excitement.

3. Who is your all-time favourite scientist and why?
I can’t say that I have one all time favourite scientist, but I do have some favourite characteristics that shine in many different scientists. I admire the courage of Galileo and the curiosity of Albert Einstein. I respect the political engagement of Ursula Franklin and the advocacy that David Suzuki shows in engaging people in science. I am enlightened by the knowledge and analytical clarity of Bernard Dickens, who was a law professor of mine and supervisor for my PhD. He is a world renowned health law scholar and it was a privilege to have worked with him.
Finally, I am energized by the collaborative spirit of SickKids researchers, who continue to inspire me on a daily basis. I’ve had the pleasure of working with multiple research teams at SickKids over the years in a variety of contexts relating to ethics. SickKids researchers are wonderful innovators who share a common commitment to seeking what’s best for kids. They are excited about interdisciplinary collaboration and see the value in having multiple disciplines contributing to knowledge generation.

4. What in your opinion is the most important scientific breakthrough and why?
When looking at science very broadly, I’d say that that a very important breakthrough was The United Nations Convention on the Rights of the Child. The convention was adopted by the General Assembly in 1990 and became international law. The principles of this convention are what I see as the essence of doing right by children. The document brings values of non-discrimination, devotion to the best interest of the child, the right to live, survival and development and respecting the views of the child.

I think this breakthrough resonates with the values that are at the heart of SickKids, which is to work in the best interest of the child. To have a United Nations convention like this is an outstanding breakthrough because the rights of children weren’t always recognized in such an impactful way. This document plays important practical and aspirational roles affecting the lives of children around the world.

In terms of more traditional science, I of course remain amazed by scientific breakthroughs like sanitization, antibiotics and immunization because the impact of these breakthroughs on improving the quality of life for children is so profound.

5. What are your major interests outside the lab?
I very much enjoy family time with my husband and two children. We are all especially fond of outdoor activities like biking, hiking and downhill skiing. We have been planning and going on what we call “summer travel adventures” for the past 12 years. For us they have been precious family time and a wonderful way to learn about different cultures, geography, animals, politics and arts.

I also enjoy almost anything that allows for creative expression. I used to choreograph dance shows for children’s theatre groups. I also love to paint. I find painting to be a very peaceful activity and almost a little science-like with its trial and error process; I like to experiment with a variety of techniques on canvas and enjoy modifying them until I’m happy with the result. I painted a couple of the paintings around the bioethics department. Painting has been a pastime that I’ve also enjoyed with my kids. I have some of their paintings hanging in my office.

6. Why science?
I think science is a good fit for me because I am a curious person by nature. I like to take an analytical approach to addressing unanswered questions linked to the well being of children. I am also energized by collaborating with equally curious people to try to solve a complex problem or to generate greater clarity.

7. Why SickKids?
I am motivated by the knowledge that my training enables me to help patients, families and colleagues in some way through my job. SickKids is a very positive place where the common thread running through everyone working here is the goal of benefitting the lives of children. I feel privileged to pursue my career in this setting and to collaborate with such talented, passionate people who are working towards this same goal. One of the many strengths of SickKids is its simultaneous commitment to pursuing both clinical care and research. I have come to see it as ideal to be in a setting where gaps in understanding are quickly translated into research studies, collaboratively designed with outstanding local, national and international teams.

8. What is the most controversial question in your field right now?
While there are currently many controversial debates in Bioethics, one of the most challenging is how we can be respectful of diversity, and enriched by it, while still being accountable for the parameters of what we find ethical in healthcare.

Bioethics does a good job at recognizing diversity on multiple levels. We understand how diversity results in opportunities to see things from multiple perspectives and enriches understanding. Nonetheless, diversity for example in culturally based values, is sometimes a very challenging and complex case. Sometimes there is a divide between a patient or family’s values and those of a healthcare team, and sometimes even differing values amongst team members. An example, not uncommon in a paediatric setting, would be the range of values related to a child’s right to participate in the decision making process related to his or her own healthcare. It was cases like this that inspired me to pursue the careful examination patient-centred care and family-centered care through our forthcoming book.

9. What are you reading right now?
At any given time, I am reading a couple books and they generally include both fiction and non-fiction. One of the books I’m currently reading is called Roots of Empathy by Mary Gordon. It’s a fascinating book that looks at the positive impact empathy has on children in building relationships with the world in terms of people and the environment; I highly recommend it. I’m also reading some travel books to help plan our next family travel adventure.

10. If you could give one piece of advice to someone considering a research career, what would it be?
Look for opportunities to learn from those who are accomplished in your field of interest. I find that scientists are very generous when it comes to describing the pathways that led to their successes and failures, so don’t be afraid to approach them with questions. I would also say that is important to take the time to develop writing, public speaking, team building and leadership skills; I sincerely believe that developing such skills is an investment in a researcher’s future. I had wonderful mentors that gave me the same advice, and I am very grateful that they did.

11. What does the Peter Gilgan Centre for Research and Learning mean to you?
It is a space that nurtures interdisciplinary collaboration right down to the core of its physical design. I am very excited about the new Peter Gilgan Centre for Research and Learning because of its expected ability to foster collaboration amongst talented, committed researchers. I am not moving into the new building because research is just one part of the Bioethics Department’s work, but my bioethics colleagues and I look forward to being there often to collaborate with SickKids researchers.

September 2013

Scientific profile