The summary is here. The full article is here. here:
Genome-wide association studies (GWAS) use DNA statistical analysis to examine the relationship between genotypic differences and phenotypic traits. These studies have revolutionized genetics, discovering over 50,000 genome-wide significant associations between gene variants and common diseases and traits. GWAS have also transformed the study of physical anthropology, establishing the relatedness of modern humans to early humans and other primates, and the ancient migration patterns of modern humans.
The NIH’s 2014 Genomic Data Sharing Policy (GDSP) governs the collection, storage, and access to the databases on which most GWAS studies in this country rely, and many data repositories deny access to people working on what the NIH classifies as “stigmatizing” or “sensitive” research.
The GDSP is not governed by the Administrative Procedure Act (APA), and the policy’s “sensitive” and “stigmatizing” standards have no legal basis and are necessarily arbitrary and capricious.
And even if we assume that the GDSP complies with administrative law, the policy is best viewed as a condition to obtaining a government benefit or a restriction based on the perspective of publicly available government information. Characterized in this way, the GDSP violates the First Amendment.
