Melissa M. Goldstein

Health Information Technology and the Idea of Informed Consent

During this early stage of HIT adoption, it is critical that we engage in discussions regarding informed consents proper role in a health care environment in which electronic information sharing holds primary importance. This article discusses current implementation of the doctrine within health information exchange networks; the relationship between informed consent and privacy; the variety of ways that the concept is referenced in discussions of information sharing; and challenges that surround incorporation of the doctrine into the evolving HIT environment. The article concludes by reviewing the purpose behind the traditional obligation to obtain informed consent and the possibility of maintaining its relevance in the new environment.

Building an Information Technology Infrastructure

The widespread adoption of health information technology (HIT) has been recognized as both a necessary element of health reform and a required building block of a modern, high performing health care system.

From EPSDT to EHBs: The Future of Pediatric Coverage Design Under Government Financed Health Insurance

We review the evolution of federal financing for child health care over the past 40 years. The Social Security Amendments of 1967 established the program of early and periodic screening, diagnosis and treatment (EPSDT) as a required Medicaid benefit. The EPSDT amendments directed agencies to cover “early and periodic” screening and diagnostic services to ascertain “defects” and “chronic conditions” in children, as well as health care and treatment needed to “correct or ameliorate” such defects and conditions discovered during the screening examinations. The 1997 enactment of the Children’s Health Insurance Program (CHIP) shifted federal policy from the use of an early coverage standard to one that gives insurers much more discretion to define medical necessity and coverage exclusions. CHIP programs offer coverage that is narrower than the benefits available under Medicaid. The Affordable Care Act (ACA) requires significantly more classes of care to be covered than does CHIP but well below the level of coverage under Medicaid. Implementation of the ACA to date suggests that the US Department of Health and Human Services will only demand pediatric coverage pegged to the commercial insurance market standards, rather than Medicaid’s unique pediatric coverage standard. Although EPSDT’s emphasis on early, developmental, and ameliorative services might result in more comprehensive benefits for children, particularly those with special health needs, one might still describe the ACA coverage as providing a basic, minimal level of services from a distributive justice perspective. It may, however, vary from state to state. States have the authority to decide whether to use an EPSDT-style approach or to follow the more restrictive approach of commercial insurance plans. Advocacy at the state level will determine which approach different states take.

Earth BioGenome Project: Sequencing life for the future of life

Increasing our understanding of Earth’s biodiversity and responsibly stewarding its resources are among the most crucial scientific and social challenges of the new millennium. These challenges require fundamental new knowledge of the organization, evolution, functions, and interactions among millions of the planet’s organisms. Herein, we present a perspective on the Earth BioGenome Project (EBP), a moonshot for biology that aims to sequence, catalog, and characterize the genomes of all of Earth’s eukaryotic biodiversity over a period of 10 years. The outcomes of the EBP will inform a broad range of major issues facing humanity, such as the impact of climate change on biodiversity, the conservation of endangered species and ecosystems, and the preservation and enhancement of ecosystem services. We describe hurdles that the project faces, including data-sharing policies that ensure a permanent, freely available resource for future scientific discovery while respecting access and benefit sharing guidelines of the Nagoya Protocol. We also describe scientific and organizational challenges in executing such an ambitious project, and the structure proposed to achieve the project’s goals. The far-reaching potential benefits of creating an open digital repository of genomic information for life on Earth can be realized only by a coordinated international effort.

The health privacy provisions in the American Recovery and Reinvestment Act of 2009: implications for public health policy and practice.

This installment of Law and the Public’s Health is the second in a two-part series examining the health information technology (HIT) provisions contained in the American Recovery and Reinvestment Act of 2009 (ARRA, or the Act),1 which was signed into law by President Barack Obama on February 17, 2009. Part I discusses the federal HIT legislative and regulatory infrastructure, as well as the Medicare and Medicaid HIT adoption incentives established by the Act.2 This column reviews ARRA’s reforms to existing laws related to health information privacy and security, particularly its revisions to the Health Insurance Portability and Accountability Act (HIPAA). The Act extends the reach of current privacy and security standards and adds new provisions related to enforcement. Following an overview, this article describes the implications of ARRA’s privacy provisions for health information collection and use in public health policy and practice.

Guiding Deidentification Forward

The Health Information Technology for Economic and Clinical Health (HITECH) Act (Division A, Title XIII of the American Recovery and Reinvestment Act [ARRA] 2009, §§ 13101–13424, 123 Stat. 115, 228...

Going Online: A Pedagogical Assessment of Bioethics Distance Education Courses for Health Sciences Professionals

Health sciences professionals work on diverse health care teams and often face ethical dilemmas. Bioethics education in a distance-learning environment is one way that such individuals can obtain relevant, easily accessible, and academically rigorous instruction on ethical decision-making and behavior. Drawing on our expertise as distance educators in George Washington Universitys Health Sciences Programs, we discuss our experiences teaching bioethics online for health sciences professionals, assess the existing evidence of best practices in online bioethics education, and provide recommendations for future pedagogical research relevant to diverse health care professionals.

Ensuring the use of federal assets in public health emergencies: the role of the Federal Tort Claims Act in enabling the responsiveness of federally funded community health centers.

A question that has taken great importance in modern public health policy and practice is whether, to the maximum extent possible, the law enables the rapid and seamless deployment of health service assets and resources during public health emergencies. This installment of Law and the Public’s Health examines the role of the Federal Tort Claims Act (FTCA), which provides legal liability coverage for federal government employees, in aiding the emergency deployment of first-responder health-care workers employed by federally qualified health centers. Following an overview of federally funded health centers and the FTCA, this article examines the issues raised by a recent federal ruling regarding the scope of FTCA coverage for health center workers during declared public health emergencies. The article concludes with a discussion of the ruling’s public health policy and practice implications for communities nationwide.