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Researcher Spotlights: Sigan Hartley, Human Development & Family Studies professor

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Researcher Spotlights are Q&As that shine a light on School of Human Ecology faculty members’ unique scholarship and research interests.

Sigan Hartley is the 100 Women Distinguished Chair in Human Ecology and a professor of Human Development & Family Studies. She is a clinical psychologist by training and says the goal of her work is to enhance the health and quality of life of people with developmental disabilities and their families. Her research focuses on developmental disabilities such as autism, Down syndrome, and fragile X syndrome.

Hartley is interested in understanding how biology interacts with the environment, including family, employment and the broader community, to shape outcomes across the life course. She then uses this information to make recommendations for social policies, interventions and supports.

How did you become interested in this area of study?

As a college student, I worked as a behavioral therapist and provided in-home support to children with developmental disabilities. I came to appreciate the wide diversity in the behaviors, functioning and health conditions of the children that I worked with. I wanted to learn more about the factors that accounted for these differences and what could be done to improve experiences.

What’s your motivation for doing this type of work, and how does it impact human well-being?

People with developmental disabilities have historically been marginalized within society. They have also been left out of research and policy considerations, despite being at high risk for many mental and physical health conditions. People with developmental disabilities don’t have access to the same high-quality care options as others within our society. A big motivator for the work that I do is to understand the unmet needs of people with developmental disabilities and to identify modifiable aspects of lifestyle and environment that could be targeted to better health and quality of life.

Where do you see an opportunity to shift a conversation?

I would like to shift the conversation toward a focus on communities historically left out of science. People with developmental disabilities are one of these communities.

Currently, one area of my research is Alzheimer’s disease in people with Down syndrome. Alzheimer’s disease is caused by brain changes that lead to the loss of memory and cognition and eventually the loss of the ability to carry out simple tasks. People with Down syndrome have a 90% lifetime risk of getting Alzheimer’s disease. This is because they have three copies of chromosome 21 and the amyloid precursor protein gene is located on this chromosome. Having three copies of this gene leads to the overproduction of a protein called amyloid-beta. This protein accumulates into plaques in the brain and is a hallmark feature of Alzheimer’s disease.

Despite their high risk for Alzheimer’s disease, most clinical intervention trials exclude people with Down syndrome. This is because of a lack of research. Thus, my lab has teamed up with Down syndrome organizations, self-advocates and researchers at UW-Madison, elsewhere in the U.S. and internationally to create a research consortium to understand Alzheimer’s disease in people with Down syndrome, establish valid measures of brain and cognitive change in this population, and to identify modifiable aspects of lifestyle related to an earlier or late age of onset of the disease. The goal of this science is to open the door for more clinical Alzheimer’s disease trials (both drug and lifestyle) for people with Down syndrome.

What has surprised you about working in your field?

I have been surprised by the benefits that come from partnering with members of the Down syndrome community in research. Our research team includes adults with Down syndrome and their parents as well as Down syndrome organizations. Having these individuals be paid members of our research team has been a wonderful experience. Their insights have been so important for shaping the questions we ask, how we structure study visits, and being thought of in how we give back to the community following research participation.

Are there any common misconceptions about your work?

I think one of the biggest misconceptions about Down syndrome is that adults with Down syndrome can’t work or live independently and do not have romantic relationships. In reality, an increasing number of adults with Down syndrome in the U.S. are living independently. There are many employment opportunities for adults with Down syndrome, and some adults with Down syndrome attend college programs. As an example, there is a certificate program at Edgewood College for adults with disabilities that offers experience for living in dorms and attending classes. In our studies, we have adults with Down syndrome who are married and who have long-term romantic partners.

What do you see as the most critical question currently facing your field?

In terms of my work on Alzheimer’s disease and Down syndrome, I think it will be critical to ensure that our research consortium reflects the diversity of people within the Down syndrome community. We do not want to only open the door for clinical trials for a small part of the Down syndrome community. Thus, we will have to focus on ensuring that we enroll people with Down syndrome from varying racial/ethnic groups, urban/rural regions and immigrant status, and establish measures appropriate for people with Down syndrome with a range of intellectual and communication abilities and preferred languages.

What else should the Human Ecology community know about you?

One of the defining features of Human Ecology is that it sits at the intersection of multiple disciplines. This makes Human Ecology an ideal field for people interested in developmental disabilities. My work draws on theory and methods from disciplines such as educational psychology, psychiatry and communication sciences. I am always looking for motivated Human Ecology students interested in joining our research team.