Big advocacy, little recognition: the hidden work of Black patients in precision medicine.

As cost-effective next-generation genome sequencing rapidly develops, calls for greater inclusion of Black people in genomic research, policy, and practice are necessary for effective translation of genomic science into precision population health and medicine. Employing a community-based participatory mixed methods research design, we developed a semi-structured survey that was disseminated to three cancer advocacy organizations. Of the 81 survey respondents 49 (60%) self-identified as Black, and 26 (32%) indicated a prior breast cancer diagnosis.

Big Advocacy, Little Recognition: The Hidden Work of Black Patients in Precision Medicine.

Public health genomics prioritizes effective and ethical translation of genomic science into population health precision medicine. With the rapid development of cost-effective, next-generation genome sequencing, calls are growing for greater inclusion of Black people in genomic research, policy, and practice. Genetic testing is often the first step in precision medicine.

United States: law and policy concerning transfer of genomic data to third countries.

This paper provides an overview of US laws and related guidance documents affecting transfer of genomic data to third countries, addressing the domains of consent, privacy, security, compatible processing/adequacy, and oversight. In general, US laws governing research and disclosure and use of data generated within the health care system do not impose different requirements on transfers to researchers and service providers based in third countries compared with US-based researchers or service providers. Of note, the US lacks a comprehensive data protection regime.

Two cheers for GINA?

The Genetic Information Nondiscrimination Act of 2008 (GINA) was recently enacted in the United States. Its supporters have applauded the passage of GINA, and they hope that it will alleviate public fear about genetic discrimination and facilitate genetic testing and participation in genetic research. Critics worry that GINA does not provide adequate protection because it fails to address discrimination on the basis of non-genetic health-related information, and it only regulates the use of genetic information in health insurance and employment.

Respecting difference and moving beyond regulation: tasks for U.S. bioethics commissions in the twenty-first century.

This article focuses on two possible missions for a national bioethics commission. The first is handling differences of worldview, political orientation, and discipline. Recent work in political philosophy emphasizes regard for the dignity of difference manifested in "conversation" that seeks understanding rather than agreement.