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Policy Issues

En una decisión histórica en junio de 2013, el Tribunal Supremo determinó que el ADN en su forma natural no puede ser patentado.

Policies and Guidance

NHGRI Guidance on Writing a Resource Sharing Plan

This page provides an overview of Resource Sharing Plans, a required document in most NIH funding applications. Most applicants for NIH funding must provide a Resource Sharing Plan (RSP) documenting plans for sharing resources that result from their federally funded work. NIH Policies that govern the sharing of resources include the NIH Model Organism Sharing Policy and the NIH Research Tools Policy.

… in the non-profit sector, such as institutions of education, research institutions, and government …

Policy Issues

Regulación de pruebas genéticas

Las pruebas genéticas se están convirtiendo en algo más común en la práctica clínica.

… la Ley de la Genómica y la Medicina Personalizada ( Genomics and Personalized Medicine Act ), con disposiciones …

Policy Issues

Highlights of Revisions to the Common Rule

Revisions to the Common Rule modernize, simplify, and enhance oversight for human subjects research in the United States.

… Rule have as-yet unknown implications for the field of genomics. This includes an upcoming assessment of what … Trial . … Background … Major Revisions Relevant to Genomics … Other Major Revisions … Proposals Not Adopted … …

Policy Issues

Genetic Discrimination

In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.

… an informed consent resource for participants in genomics research. … Some workplaces implement wellness … in emergency medical services, housing, mortgage lending, education, and other state-funded programs. You may visit …

Policy Issues

Informed Consent

Informed consent shows respect for personal autonomy and is an important ethical requirement in research.

… In designing an effective informed consent process for genomics research, researchers should consider the … Sufficient time should be allocated for complex genomics concepts such as increased disease risk rather than … of communicating the potential risks and benefits of genomics research; however, it may not be practical or …

Policies and Guidance

Data Sharing Policies and Expectations

A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.

… best practices for drafting informed consent documents for genomics research, see the NHGRI Informed Consent Resource . … policy commits to making research results available The Genomics Landscape - February 2, 2023 Genomic Data Sharing … 2022 NHGRI to require explicit consent for data sharing in genomics research December 30, 2019 Protecting participants, …

Policy Issues

How a bill becomes a law

The 9 steps a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example.

… a law that was passed in 2008 and impacts the field of genomics, provides an excellent example of the legislative …

Data Sharing

NHGRI Data Sharing Governance Committee

The NHGRI Data Sharing Governance Committee is responsible for the activities necessary for the Institute to implement and maintain NIH and NHGRI data sharing policies.

… Genome Sciences Rene Sterling, Ph.D., M.H.A. Division of Genomics and Society Ivona Aksentijevich, M.D. Division of …

Policy Issues

Return of Research Results

Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.

… genomic research. These issues are not new or unique to genomics, but advances in genomic technologies have brought … from a scientific investigation. For example, in genomics research, an IRR could be whether a research … the objectives of an investigation. An example of an IF in genomics research would be finding that a study participant …