PUBLIC HEALTH RELEVANCE: This project will explore the ethical, social, and cultural issues of the American Indians in regards to genetic research. Engaging tribal leaders and relevant stakeholders such as scientists, clinicians, and policy makers on issues around genetic research will create a more complete understanding of these challenges and enable them to create policies that may permit greater participation by American Indians and their tribes.
When the Human Genome Project was completed almost ten years ago it cost millions of dollars to sequence an individual's genome. Yet, the evolution of high-throughput sequencing and computational tools has been swift and it will soon be possible to genotype anyone for a nominal price. The ability to generate genomic data coincides with the adoption of electronic health records, setting the stage for large-scale personalized medicine research, the results of which can improve the efficiency, effectiveness, and safety of healthcare delivery.
A big data ecosystem is evolving in our society in which people may have, or feel they have, little control over the flow of their personal health information, and thus their privacy. Further, although there has been significant discussion related to big data and privacy at the highest levels of government, there is little consensus among scholars and stakeholders as to what privacy actually is, not to mention a lack of data from individuals as to personal conceptions of privacy.
Being transparent about the use of data collected during clinical care is important to establish trust relationships between patients and researchers. We propose to develop a system to elicit patient preferences for clinical data sharing that takes into account what data are going to be shared and who is going to be the recipient of shared data. Lessons learned from a pilot study indicate that providing such options in a real clinical setting does not result in massive patient withdrawal in data sharing.
From the passage of the country's first sterilization law in Indiana in 1907 until the 1960s approximately 60,000 people were sterilized based on eugenic criteria that sought to regulate the reproduction of the "unfit" and mentally deficient. California performed about 20,000, or one-third, of all documented sterilizations nationwide. Few empirical historical analyses of this practice are available. In 2007, while conducting historical research at the Department of Mental Health (now Department of State Hospitals) in Sacramento, Dr.
Ms. Christi Guerrini is research faculty in the Center for Medical Ethics and Health Policy at Baylor College of Medicine (BCM). BCM is a premier academic health science center known for excellence in education, research, and patient care. The BCM main campus is located in the Texas Medical Center, which is the largest medical center in the world. The Center for Medical Ethics and Health Policy at BCM was established in 1982 and has created an academic culture defined by and supportive of collaborative research and teaching.
Stephanie Kraft, JD, is an Acting Instructor in the Division of Bioethics, Department of Pediatrics, University of Washington School of Medicine. She has a background in law and economics and has completed postdoctoral fellowships in bioethics at the Stanford Center for Biomedical Ethics and the Treuman Katz Center for Pediatric Bioethics at Seattle Children?s Hospital and Research Institute. Her prior work includes mixed methods studies related to informed consent and the ethical, legal, and social implications (ELSI) of genetics and genomics.