Comment on OMB-2026-0034-0001

Genetic Alliance is a national nonprofit organization focused on genetic disease, genomic medicine, and the responsible use of molecular information across the lifespan. We work with individuals, families, communities, clinicians, researchers, laboratories, and advocacy organizations to advance accurate diagnosis, appropriate care, research participation, data access, and participant control for people whose health depends on molecular understanding of disease. Genetic conditions affect infants, children, adolescents, adults, aging adults, and entire families across generations. Progress depends on the ability to follow the evidence wherever it leads for as long as it takes, not on forcing research to conform to political priorities that may change every election cycle. For these reasons, Genetic Alliance strongly opposes the provisions in OMB-2026-0034 that would destabilize federally supported research, restrict dissemination of scientific findings, and obstruct international collaboration. These provisions are not neutral administrative changes. They threaten the core infrastructure that makes molecularly informed diagnosis, care, surveillance, treatment development, and public health response possible. First, proposed §§ 200.202, 200.205, and 200.340 would make long-term research unstable by tying awards more directly to shifting federal policy priorities and discretionary termination. That approach is incompatible with modern biomedical research. Longitudinal natural history studies, registries, biobanks, diagnostic networks, newborn screening follow-up, cancer cohorts, infectious disease surveillance, treatment-development programs, pharmacogenomic studies, and genotype-phenotype studies cannot be restarted every political cycle. A child waiting for a diagnosis, an adult with cancer seeking a targeted therapy, a patient with an infection requiring resistance-informed treatment, a family contributing data to help others, or a community building a registry should not have their future determined by political review rather than scientific merit, clinical need, and public health value. If federal awards can be re-reviewed, suspended, or terminated based on changing political priorities rather than the needs of affected people and the integrity of the science, the result will be interrupted studies, stranded participants, lost data continuity, delayed answers, and avoidable harm. Second, proposed restrictions on conferences, subscriptions, and publication costs would directly impede the movement of knowledge needed to diagnose, treat, monitor, and prevent disease. For molecularly informed medicine, this is not a minor administrative inconvenience. Case reports, conference presentations, pre-publication discussions, expert meetings, journal access, open publication, data deposition, and rapid dissemination are often the routes by which a clinician recognizes a condition, a researcher finds a matching case, a laboratory identifies a variant pattern, a public health team tracks an emerging pathogen, a family receives an answer, or early clinical findings are translated into care. Evidence is scattered across institutions, countries, languages, specialties, databases, and public health systems. Slowing access to publications, meetings, and scientific exchange will slow diagnosis, delay care, weaken surveillance, and reduce the likelihood that the right intervention reaches the right person at the right time. Third, proposed § 200.220 is especially damaging. OMB proposes a new government-wide prohibition on using federal funds to support bilateral or multilateral collaborations, agreements, programs, or activities with covered foreign countries or covered foreign entities. The prohibition would apply not only to direct research activities, but also to technical assistance, travel, and indirect costs allocable to such collaborations. This would be devastating. Modern biomedical research cannot be conducted effectively within national borders alone. A broad restriction on international collaboration would not merely reduce scientific convenience. It would make some research impossible.The science depends on global evidence. A rule that restricts the evidence base will make diagnosis, treatment, surveillance, and public health response less accurate, less equitable, and less useful. On behalf of people and families living with genetic disease across the lifespan, and on behalf of all those whose care depends on molecular diagnosis, targeted treatment, pathogen surveillance, pharmacogenomic evidence, and biologically informed medicine, Genetic Alliance urges OMB not to finalize OMB-2026-0034 unless these provisions are removed or substantially revised: §§ 200.202, 200.205, 200.220, 200.340, 200.432, 200.454, and 200.461. For our full comments on each of these proposed provisions, please see the attached document.