Decision Making, Genetic Testing, and Personalized Medicine
One of the key ethical goals of modern healthcare is helping individuals make decisions that reflect their desires and express their goals and commitments in life. The old world of “doctor knows best” has been supplanted by a world of patient autonomy. But helping patients make good decisions, often regarding cutting edge technologies like genetic testing, raises complex issues that faculty at the IU Center for Bioethics address in their funded work in ethics, as well as in empirical research.
Advances in genetics, molecular biology, epidemiology, and other fields are ushering in an era of “personalized prevention,” allowing unprecedented precision in calculating individuals’ risk and targeting interventions to optimally protect individuals. Without careful thought and testing, such “personalized prevention” can confuse patients and clinicians, fail to improve healthcare outcomes, and add additional expense to an already overburdened healthcare system. Research at the IU Center for Bioethics addresses ethical and empirical questions in this area. More
Decision aids aim to support patient centered care and shared decision making, in part by improving patient understanding of their options, but key questions arise about how decision aids can optimally present information about benefits, burdens, and risks. Some of these questions relate to how data should be presented to inform choices without overwhelming or confusing patients, especially those with limited numeracy. Dr. Schwartz has written extensively about the ethical issues in this area and conducts empirical research focusing on the design of decision aids for patients considering colon cancer screening. More
In 1983, Huntington disease became the first disease to be mapped to a previously unknown location on chromosome 4. Since that time, genes for other late onset autosomal dominant diseases such as early onset Alzheimer's have been identified. In the absence of effective treatments or cures, the ability to predict the occurrence of disease and disability in the future raises thorny questions. Researchers at the IUCB are at the forefront of addressing these questions by offering genetic counseling and testing, shaping testing guidelines, examining the outcomes of genetic testing and analyzing ethical and policy issues surrounding testing. More