Navigating Law to Share Environmental Health Data: Highlights from the Public Health Law Summit
December 4, 2019
In October, 2019, the Network held a two-day Summit focused on strategies to collect, use, share and protect multi-sector data to improve the health of communities. Among the topics covered was environmental data and how to navigate relevant laws.
Environmental factors are linked to a wide range of negative health outcomes, ranging from respiratory diseases like asthma and chronic obstructive pulmonary disease (COPD); to birth outcomes such as birth defects, low birthweight and preterm delivery; and to multiple forms of cancer. In fact, according to a 2017 study (examining 2012 data), 23 percent of global deaths and 22 percent of global disability adjusted life years (DALYs) are attributable to environmental factors. The percentage is even higher among children under five years old and adults between the ages of 50 and 75 years. Importantly, countless studies show that the burden of environmental hazards is disproportionately borne by communities of color and low-income communities. Consequently, environmental justice principles such as self-determination and participation are key to addressing environmental health threats in an equitable way.
Reducing the impact of environmental hazards on health requires an understanding not only of health outcomes, but also of hazards and human exposure pathways. Relevant data may be drawn from a range of sources, including routine public health surveillance (e.g., biomonitoring, routine disease reporting and disease/condition-specific registries), regulatory processes (e.g., permit applications, inspections and mandatory reporting), surveys (e.g., the National Health and Nutrition Examination Survey (NHANES)), vital statistics, electronic health records, and biologic specimen repositories.
In addition, the CDC’s National Environmental Public Health Tracking Network and associated state and local environmental health tracking programs compile a range of data about environments and hazards, associated health effects[BC2] , and population health. This data is very valuable, but it is often several years old and may not be available at the level of granularity needed to guide local interventions.
Indeed, an important aspect of environmental health data sharing and use is that environmental health is local. This is in part because the presence and concentration of hazards within the medium through which an environmental exposure occurs (e.g., water, air, soil) are often geographically based and/or clustered. For this reason, responding to an environmental health threat in a meaningful and timely way requires real-time, granular data and prompt local action. It is essential that a local health department either has the internal capacity to collect and analyze environmental health data or has responsive, collaborative state partners.
The broad range of potentially relevant environmental health data sources highlights one of the key legal challenges with obtaining and using local data: often each type of data (hazard, exposure and health outcome) is governed by a different law and may be collected by a different entity. For example, underground waste disposal may be regulated by an environmental agency while related health outcomes are monitored by different arms within a health department (e.g., cancer registry, disease reporting). These multiple sources of environmental health data mean that cross-sector and interagency collaboration are often crucial to timely analysis of environmental health data.
Effective collaboration requires recognition by all involved agencies that responsibility for the public’s health lies not only with designated health departments, but also with the regulatory agencies charged with enforcing statutes and regulations intended to protect the public from hazardous substances and conditions. Moreover, reading multiple laws together is complex and requires legal judgments. To assure protection of the public’s health, safety and welfare—which is at the core of a state’s authority to regulate the environment—legal judgments must be informed by public health expertise.
An important action often taken in response to a confirmed or suspected environmental health threat is public notification. This may occur in the context of widely prevalent threats, such as by creating a lead hazardous properties registry, or it may occur in response to an emergent threat, such as by issuing a “do not drink” advisory for local well owners if contamination is suspected. In either case, public notification is an especially important mechanism in environmental health contexts because it can enable community members to take initial steps to protect themselves against exposure.
In these circumstances, understanding legal limitations and parameters for disclosure is essential. Public disclosure raises important legal and ethical issues, as it requires balancing the public’s need for information against individual privacy interests. In some cases, the benefit of public notification may need to be weighed against the potential stigma that may result for affected communities or populations. In many contexts, disclosing de-identified data may be an effective strategy for balancing these competing concerns. It is important to keep in mind that de-identification may be defined differently depending on the data involved and applicable laws. Therefore, each applicable law should be considered in analyzing whether and how to disclose information. (Note that although the Health Insurance Portability and Accountability Act (HIPAA) is frequently referenced reflexively, it often does not apply in the context of a public health investigation, particularly if a health department is not covered by HIPAA or is a HIPAA hybrid entity.) View the Network’s de-identification toolkit for additional information and resources.
This post was developed by Colleen Healy Boufides, J.D., Deputy Director, Network for Public Health Law – Mid-States Region Office.
The Network for Public Health Law provides information and technical assistance on issues related to public health. The legal information and assistance provided in this document do not constitute legal advice or legal representation. For legal advice, readers should consult a lawyer in their state.
Support for the Network is provided by the Robert Wood Johnson Foundation (RWJF). The views expressed in this post do not necessarily represent the views of, and should not be attributed to, RWJF.