Research focused on marital communication about genetic test results

Marital communication about a spouse’s genetic test results may influence the overall well-being of the person who has been diagnosed, his or her spouse, and the couple. Rachel Smith, associate professor of communication arts and sciences, and human development and family studies, along with a team of Penn State researchers, is investigating this phenomenon with the goal of designing future couple-based interventions.

Smith recently received a $40,000 grant from the Alpha-1 Foundation through their ESLI mechanism (Ethical, Legal and Social Issues Related to AAT Deficiency) to support the pilot project, titled, "Alpha-1 & Couples: Beliefs, Communication, and Well-Being." Alpha-1 antitrypsin deficiency (alpha-1) is a hereditary condition that damages the lungs or liver and makes individuals vulnerable to pulmonary and liver diseases such as emphysema and cirrhosis.

These pulmonary and liver diseases may occur as adults. Consequently, people receiving the genetic test in the process of diagnosing adult-onset conditions may be in committed relationships. Receiving such weighty genetic information may impact both the diagnosed person and his or her spouse.

"The Alpha-1 Foundation’s support of this project has given us the opportunity to investigate whether couples’ beliefs about genetic illness may influence their communication patterns, and if these conversations, in turn, shape patients’ well-being as they’re making important decisions in regard to managing alpha-1," Smith said.

These decisions often include with whom couples choose to share genetic information, such as children, friends, physicians or insurance providers.

"Beliefs about possible genetic stigmas and discrimination may influence who couples disclose the diagnosis to and what they share," Smith said. "And these decisions could very well shape people's stress levels, social networks and even insurance coverage -- all of which factor into overall well-being."

To fully explore these complex relationships, Smith has brought together an interdisciplinary team of researchers, including Roxanne Parrott, distinguished professor of communication arts and sciences, and health policy and administration; Donna Coffman, research associate at the Methodology Center and research assistant professor in the College of Health and Human Development; Kathryn Peters, a genetic counselor; Mary Poss, professor of biology, and veterinary and biomedical sciences; and Michelle Baker, postdoctoral researcher. Members of the team are also affiliated with the Center for Infectious Disease Dynamics, the Methodology Center, and the Center for Medical Genomics.

 

"The expertise that each collaborator brings to this project has really refined and developed our research focus," Smith said. "Their insights not only add to the theoretical and methodological rigor of our investigation, but also extend to the practical interventions that will result from this project."

In order to reach couples with at least one spouse who is diagnosed with alpha-1, the interdisciplinary team has partnered with the Medical University of South Carolina, which houses a research registry of more than 1,500 individuals diagnosed with alpha-1. Charlie Strange, professor of Pulmonary and Critical Care Medicine and director of the Alpha-1 Research Registry at MUSC, and Michael Graves, MUSC/Alpha-1 Registry Coordinator, have coordinated with Smith to contact more than 400 couples through the research registry to participate in the project.

"The help we’ve received from Charlie Strange and Michael Graves at the Alpha-1 Research Registry has been invaluable to this project," Smith said. "We are very excited about this partnership and grateful for their dedication to helping patients and families managing alpha-1 diagnoses."

Last Updated June 01, 2012