With $4 million in funding from the National Human Genome Research Institute, the University of Utah Center of Excellence in ELSI (Ethical, Legal, & Social Implications) Research (UCEER) will explore ethical, legal and social questions raised by advances in genomic research and the increasing availability of genomic information.
One of a handful of such centers across the nation, UCEER is carrying out research projects with diverse collaborations across the U of U campus, including the School of Medicine, College of Nursing, College of Engineering, College of Humanities, and College of Law.
During a time when the secrets of our genetic code is becoming increasingly accessible, the ability of knowing what to do with that information is lagging behind. It's hard enough to determine the next steps upon learning that someone's DNA predicts a future wrought with serious disease. Now, imagine learning that there's a chance that a newborn, or unborn, baby could inherit the serious condition. Prenatal genetic testing adds a thick layer of emotion, and uncertainty, to the DNA equation.
"These situations can raise a host of problems," says pediatrician and ethicist Jeffrey Botkin, M.D., M.P.H., director of UCEER. "Two parents may react very differently to prenatal testing results. There could be many causes for confusion, including a basic lack of understanding of how inherited disease is passed down from one generation to the next."
A main focus of UCEER is to develop ways to help parents, and their doctors, take in complex information, and make informed choices. It's a particularly tricky challenge considering that prospective parents come from all walks of life, with different backgrounds and levels of education. That's why UCEER is investigating approaches that deviate from standardized sign-and-date forms that are often difficult to understand.
In collaboration with Engineering Arts and Entertainment, UCEER is creating an interactive gaming app to educate pregnant couples about genetic testing and help them come to terms with one another's values. One thing parents don't often anticipate, for example, is that prenatal tests may reveal previously unappreciated health risks that run throughout the family. "Gaming technology is looking very promising for improving health-care decision-making," says Botkin. "We think games will help couples think through different scenarios and give them realistic expectations of what genetic testing can and cannot tell them."
Delivering the information can be an equally challenging task for health care providers. To help them prepare, faculty from the College of Fine Arts will train students and medical professionals in theatrical techniques, equipping them to communicate effectively and deal with unanticipated reactions. Other projects include surveying attitudes and developing educational materials for specific populations, including Spanish speakers and the Pacific Islander community.
A new Center for Law and Biomedical Sciences at the College of Law, will research legal issues that could arise when genomic information is subject to further scrutiny. Of particular concern are so-called "secondary findings", signs of health conditions other than the ones that were tested for. What are the health care provider and testing laboratory's obligations in searching for and disclosing such information? The center will provide guidance for defining expectations to avoid accusations of negligence in this fast-moving field.
"Genetics are at the core of who we are, and it's not surprising that associated issues interface with a wide variety of disciplines," says Botkin. "By forming liaisons with centers of scholarship across campus, our goal is to fill unmet needs and anticipate new ones before they arise."