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.

Targeted gene sequencing using large panels has become an increasingly important strategy for evaluating disease risk for many inherited diseases. Expanded gene panels are more sensitive than single gene testing and often more cost effective than sequential testing, leading to additional diagnostic and prevention opportunities. However, these panels also identify rare variants of uncertain clinical significance (VUS) in many patients.

Genomic literacy plays a critical role in informed decision-making for genomic testing, in the implementation of the test and the accurate interpretation of the results, and in our policy making process as a society. The National Human Genome Research Institute's 2011 vision for the future of genomic medicine specifically cites the need for both providers and consumers to achieve genomic literacy. Yet despite its importance, there is no effective tool for assessing genomic literacy.

With the dramatic reduction in the cost of whole genome sequencing (WGS), genomic data are becoming increasingly available and have the potential to advance public health and promote personalized medicine. However, human genomic data usually carry sensitive personal information making data owners cautious about sharing it and genomic privacy is emerging as a big challenge for the entire biomedical community. In this proposal, we will develop novel methods for genomic privacy protection, which will facilitate genomic research.

Concerns about privacy and personal identity impede use of data about genomic variation, phenotypes, demographics, and exposures from large numbers of people to uncover the contributions of such information on health and disease, knowledge that can improve clinical care. People worry that these data and genomic data in particular, cannot be secured. Many fear that data about them will be used in ways they oppose (e.g., to deny them and those they love access to jobs and insurance) because existing legal rules about such uses are not comprehensive.

This application is to fund the University of Utah Center of Excellence in ELSI Research (UCEER). The University of Utah has a strong tradition in human genetics and ELSI research and this proposal will build on our successful development and management of a P20 funded CEER. The proposed UCEER will focus primarily, although not exclusively, on issues relevant to population screening for genetic conditions in the healthcare of women, children, and young families.

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.

This 3-year R01 based at the University of Minnesota and Vanderbilt University will convene a national Working Group of top legal and scientific experts to analyze current U.S. federal and state law, regulation, and guidance on translational genomics, and to generate consensus recommendations on what the law should be, to optimize successful translation of genomics into clinical use. The law underlying genomics is currently unclear, poorly understood, and contested.

Living donor kidney transplantation (LDKT) is promoted to redress the shortage of kidneys for transplantation. However, studies show that living donors (LDs) have a greater risk of kidney failure than healthy non-LDs post-donation.4-6 Moreover, African American (AA) LDs have an even greater risk of kidney failure post-donation than European American (EA) LDs.4,5 These findings have generated heightened concerns in the transplant community over protecting LDs' safety and improving LDs' informed consent.7-14 Genetics may help explain this disparity.

Responsible conduct of research (RCR) is an essential requirement for research training in developed countries and most academic and funding institutions require researchers to obtain such training before starting a research project Jordan is one of the more academically established countries in the Middle East and North Africa (MENA) region with a high per-capita university education and progressive research agenda. It is also the hub for pharmaceutical drug development with over 20 companies generating generic drugs and exporting it to the region and globally.