Privacy Preserving Analytics for Kawasaki Disease in African Americans
Preserving research subject privacy while accelerating discovery through inter-institutional collaborations remains a challenge. Genotype data itself is considered an identifiable code similar to a social security number or fingerprint, so individual-level data cannot be shared while still preserving privacy. Collaborations between countries are further restricted by government-level policies prohibiting sharing of individual-level data. Previous work in this application have been tested merely on simulated data, but not on the real-world setting. We will use a real-life challenge associated with the analysis of single nucleotide polymorphisms (SNPs) and susceptibility to Kawasaki disease (KD) among U.S. children of African American (AA) descent to test these privacy-preserving algorithms and solve practical challenges.
Jane Burns, MD (University of California San Diego)
David Lloyd, MD (Emory University)
iDASH Partnership for Epidemiological Research in Hispanic/Latinos
Hispanics/Latinos are now the largest racial/ethnic population in the United States. Understanding and improving their research literacy is critical to participation in research studies of all types. In this study, we will use mixed methods to explore cultural and language factors that influence the informed consent process. By examining consent knowledge, biospecimen knowledge, and research literacy in relation to longitudinal cohort studies we hope to document strategies to increase Hispanic/Latino involvement in research trials. In the second aim of the study the iDASH partnership will help address needs for secure data storage, de-identification, and analysis to inform future HCHS/SOL leadership.
Gregory A Talavera, MD, MPH (San Diego State University)
Sheila F. Castañeda, PhD (San Diego State University)
Informed Consent for Biospecimen Collection and Data Sharing among Low-income, Uninsured and Underinsured Women: Is it a Matter of Trust?
Little is known about willingness of individuals from underserved populations to participate in biospecimen collection and data sharing, and whether participation varies according to the individual who is attempting to obtain informed consent from patients for such participation. We propose to conduct a pilot study to compare two methods of informed consent delivery for biospecimen collection in a population of individuals receiving care at a safety net health care setting in the Phoenix, Arizona metropolitan area. We specifically aim to: (1) Compare the rate of informed consent for biospecimen collection and data sharing for research solicited by a physician with the rate of informed consent solicited through a research assistant; (2) Explore differences in informed consent delivery by the following factors: age, race/ethnicity, health literacy, cancer risk perception, language use, and breast cancer vs. non-cancer diagnosis.
Elena Martinez, PhD (University of California San Diego)
Ian Komenaka, MD (Maricopa Medical Center)
Privacy Preserving Shared Access to Computing on Sensitive Data: A Feasibility Study
Preserving individual and institutional privacy while providing shared access to sensitive data is an issue. In this study, we will explore the feasibility of developing and implementing a data access and sharing model for researchers who are interested in using American Indian health data for scientific studies. This data access and sharing approach will not require data to be transmitted out of the data source repository at the Strong Heart Study Coordinating Center at the University of Oklahoma Health Sciences Center. We will inform the American Indian tribes of our approach and solicit their feedback, and any forms of data sharing will have tribal approval prior to sharing. Furthermore, we will assess if this model meets NIH data sharing requirements.
Elisa Lee, PhD (University of Oklahoma Health Sciences Center)
Ying Zhang, MD (University of Oklahoma Health Sciences Center)