Fairness in Precision Medicine

Imagine that in the future, someone seeking medical care meets with a clinician who has a data resource that includes not only her medical history but also her genetic sequence and activity tracker information, as well as data about her housing, water, air quality, and the strength of her social networks.From this data, the clinician would know what diseases she was at risk for before developing any symptoms, and would even know which medications would work best if there was disease onset.For some, this scenario is empowering; for others, it's terrifying.Yet, this is the ideal of precision medicine, an emerging approach that aims to capitalize on the growing availability of health data to both deliver better care to individuals and to improve the efficiency of the health care system as a whole. RESEARCH QUESTIONSThis dream of a precision medicine future contrasts with the reality of medical care in the United States today.The United States spends more money on health care than any other country, but does not correspondingly have the best health outcomes.Furthermore, health disparities among demographic groups are staggering. 1 Access to data, specifically large volumes and varieties of health data, could help health care providers intervene and begin to address some of our health care ills.The rapid digitization of medical records 2 and the advances in computing and data analysis techniques mean that other kinds of data, in addition to genetics, can also be mined for insights about health and disease. 3 The hope that new forms of data and information processing could be harnessed to lead to better medicine has been an important impetus of medical research for many years.For example, scientists hoped that sequencing the entire genome in the Human Genome Project would not just advance molecular biology, but would be applied to medicine and lead to exciting and unprecedented insights about health. 4Though we can trace the genealogy of precision medicine from genetic research, another important part of the story is increasing scientific interest and research on other, nongenetic factors for disease.