Scientists Study Differences in How Americans and Israelis React
When a Baby’s Health is in Question
The birth of a baby is an exciting and yet nerve wrecking event for any family. Imagine if that family finds out that their newborn has a rare medical condition, how do they absorb the news and how do they make good decisions for their future? Stefan Timmermans, Ph.D., Professor and Chair of the UCLA Department of Sociology, is exploring the inner workings of that decision making process and how the family’s medical team delivers the unsettling news. In the United States, newborns receive screenings to test for a myriad of unusual metabolic and other rare diseases. By contrast, in Israel, there is a focus on pre-conception screening.
Timmermans teamed up with Israeli scientist Aviad Raz, Professor of Organizational and Medical Sociology in the Department of Sociology and Anthropology and the Ben-Gurion University of the Negev. They received a United States-Israel Binational Science Foundation (BSF) grant to consider the differing pre-natal and post-natal screenings in their host countries as a basis for studying the effect on the family when the timing of delivering news about the health of their infant differs.
This type of study is the core of Timmermans’ work. His research draws from medical sociology and science studies and uses ethnographic and historical methods to address key issues in the for-profit U.S. health care system. He has conducted research on medical technologies, health professions, death and dying, and population health.
Similarly, said Raz, “My research focuses on religious and ethnic groups and identities in contemporary Israeli society, especially in the context of health and family studies; as well as on the social and bioethical aspects of medical organizations, medical sociology and cross-cultural bioethics, especially in regard to community genetics and patient support/disability organizations.”
Raz noted that his partnership with Timmermans started in 2010. “The Sol Leshin Program for UCLA-Ben-Gurion University Academic Cooperation provided us funding for two exchange visits. While visiting Prof. Timmermans in Los Angeles, we met with Newborn Screening (NBS) professionals at the UCLA hospital. During our visits we created the groundwork for the larger research study. Even today with all the virtual technology there is still no substitute for personal collaboration. With additional data gathered in Israel from interviews with geneticists and biologists working at the NBS laboratory at the Tel-Hashomer hospital in Tel-Aviv, we finalized what has become the four year BSF-funded research program that launched this year.”
Their research is further supported through The Rosalinde and Arthur Gilbert Foundation – BSF Multiplier Research Grants Program. “I am thankful to the Gilbert Foundation for this special support and the opportunity to work together with Professor Raz in this exciting and useful research,” related Timmermans. “Often the social sciences are overlooked in favor of the hard sciences yet we believe it’s important to understand people’s behavior and the important health implications. Social dimensions translate into vital health outcomes.”
“As a social scientist,” Timmermans explained, “I want to learn how we integrate information gleaned from new medical technology into the meaning of one’s life. My work can inform the geneticist how better to deliver medical information to the family. I have had the privilege of sitting in the room when families learn the news about the health of their infant. My observations can later inform how we better communicate this complex and potentially devastating news.” He stated, “I have great empathy for what these families go through. We hope our work will help ease the burden of relating the news and developing better ways of communicating critical health information.”
Raz continued, “Testing each and every newborn is one of the largest public health programs around. Yet in Israel it is little known or discussed by the public. We are trying to find out why, in light of the avid consumerist drive the Israeli public shows for prenatal testing. In the U.S. newborn screening has been shaped and expanded following the lobbying of patient associations. Yet in Israel, these patient associations have not been active in the context of NBS. In Israel there are about 170,000 newborns per year, 15 diseases are screened for, and about 100 positives on average are found. Parents whose newborns receive an abnormal test result hear from the medical system, but many do not know what the information really means. The baby looks healthy, and many parents are not sure what to make of the screening result in terms of the required medical supervision and treatment. By talking with parents and hearing their own experience, and comparing this to what happens in California where more than 50 diseases are being screened for, the project enables us to better understand, and improve, the complexities of risk communication between parents and doctors.”