The National Heart, Lung, and Blood Institute (NHLBI) has appointed Consortium Chair Susan M. Wolf to the External Advisory Panel for the Trans-Omics in Precision Medicine (TOPMed) Program, which is dedicated to the advancement of heart, lung, blood, and sleep precision medicine. Since its launch in 2014, TOPMed has supporting whole genome sequencing and other omics platforms such as metabolomics and proteomics; the project researchers expect to have achieved a total of 150,000 whole genome sequences by the end of 2018. Research conducted on such a scale raises importance governance questions, including how best to ensure the privacy of participants' health data when it's shared with the broader research community. Prof. Wolf is a renowned expert on genomic privacy, having led several research studies that established the legally and ethically preferred methods to manage research findings from biobanks. The External Advisory Panel will provide the NHLBI Director and staff with expert guidance on TOPMed, with the goal of applying systems biology to drive the future of precision medicine.
To date, there has been very little study of the ethical and legal issues surrounding unregulated health research performed by "citizen scientists." A three-year grant from the National Institutes of Health will enable a team of 30 researchers from leading research institutions, health technology developers, and patient advocates to consider a wide range of issues, including the various types of mobile health research platforms, the potential applicability of various federal and state laws regulating research, possible models of self-regulation, and specific measures from online consent to integrating privacy protection in health apps.