Robinson Bradshaw

Topic: NHGRI

Weekly Roundup: Science Funding, DTC and Medical Device Caucusing

With so many developments at the intersection of genomics and the law, there are often a variety of interesting stories that, for one reason or another, don’t find their way into a full-length posting on the Genomics Law Report. Here we recap several recent key developments and, at bottom, round up all of the recent […]

How Will Myriad Respond to the Next Generation of BRCA Testing?

Robert Cook-Deegan contributed to this commentary. Dr. Cook-Deegan is Director of the Center for Genome Ethics, Law & Policy at Duke University Institute for Genome Sciences and Policy’s and is currently on leave at the Fondation Brocher in Hermance, Switzerland. The past few months have brought a number of significant research and commercial developments in the BRCA […]

Getting Our Act Together for the Second Decade of Human Genomics

[Editor’s Note: This post originally appeared at Daniel MacArthur’s blog Genetic Future, which is part of Wired Science Blogs.] We have recently summarized efforts by two state legislatures to design regulatory schemes addressing issues raised by the proliferation of genetic information about individuals. New York’s effort addresses questions of insurance coverage for genetic testing. Massachusetts’ […]

Digging Deeper into the EEOC’s Final GINA Regulations

As we wrote yesterday, last week the Equal Employment Opportunity Commission (EEOC) issued definitive rules and regulations (pdf) with respect to Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA). In our previous post we offered a brief overview of the new regulations, as well as some preliminary suggestions for employers just now coming […]

Genomic Privacy and Re-Identification Redux

New research published this week in the Proceedings of the National Academy of Sciences from Loukides et al. offers up a new method for preserving individual privacy while linking genomic and healthcare data. (“Anonymization of electronic medical records for validating genome-wide association studies.”) Daniel Cressey of Nature News and Katharine Gammon of Technology Review have […]

Re-identification and its Discontents

Last fall, a paper from Homer et al. in PLoS Genetics made waves by demonstrating that it was possible, in principle, to identify an individual’s genomic data within a large dataset of pooled genomic data. Pooled or aggregated genomic data had previously been considered to provide individual research participants with a strong measure of privacy. The […]

Does Familiarity Breed Acceptance? New Program Encourages Young Doctors to Get Personal with DTC Genomics.

The Genomics Law Report launched its new series What ELSI is New? yesterday with guest commentaries from Hank Greely and Misha Angrist. One of the issues that both Greely and Angrist tackle—from different angles and with decidedly different styles—is the widely acknowledged shortage of health care professionals qualified to understand and interpret genomic information of […]

Informed Consent for Pediatric Biobanking

What rules should govern the participation of children in large-scale genomic biobanking research? That’s the question that David Gurwitz, Isabel Fortier, Jeantine E. Lunshof and Bartha Maria Knoppers tackle in a policy forum piece in the current issue of Science. The Importance of Open Consent In considering the use of DNA samples and phenotypic data […]

Is the ACCP’s Call for Greater Governmental Regulation of DTC Genetics Premature?

Another player has entered the debate over direct-to-consumer (DTC) genetic testing and come down on the side of greater regulation. In a position statement authored by Barbara Ameer and Norberto Krivoy (pdf), the American College of Clinical Pharmacology (ACCP) proposes greater regulation of laboratory genetic tests generally, DTC advertising of genetic tests, and communication to […]

NHGRI Commits $9.5 Million to Spur Innovation

This week, the National Human Genome Research Institute (NHGRI) committed an additional $9.5 million to fund advancements in genome-sequencing in pursuit of its goal to “reduce the cost of sequencing a mammalian-sized genome to approximately $1,000.” Through its “Revolutionary Genome Sequencing Technologies—The $1,000 Genome” program, the NHGRI continues to drive a remarkable decline in the cost […]