Exchanging genetic data for public health practice and human subjects research: implications for health practitioners

What are the Differences between Public Health Practice and Research? This perplexing question constantly arises in the planning and performance of public health activities involving the acquisition and use of identifiable health information. Public health agencies collect and analyze significant identifiable health data from health care providers, insurers, other agencies, or individuals to perform an array of public health activities. These activities include surveillance (e.g., reporting requirements, disease registries, sentinel networks), epidemiological investigations (e.g., to investigate disease outbreaks), and evaluation and monitoring (e.g., public health program development and analysis, oversight functions). Few debate that these essential public health activities, often specifically authorized by law, are classifiable as public health practice.Other public health activities in which identifiable health data are acquired or used, however, can resemble, include, or constitute human subjects research. “Human subjects research” is legally defined as “a systematic investigation, including research development, testing, and evaluation, designed to develop or contribute to generalizable knowledge” that involves living human subjects (or their identifiable, private data).

Download Full-text

Novel Tools Supporting Knowledge Translation for Public Health Practice in British Columbia, Canada

International Journal for Population Data Science ◽

10.23889/ijpds.v1i1.386 ◽

2017 ◽

Vol 1 (1) ◽

Author(s):

Joanne Stares ◽

Jenny Sutherland

Keyword(s):

Public Health ◽

Health Care ◽

Air Quality ◽

Public Health Practice ◽

Secondary Data ◽

Data Sets ◽

Health Practice ◽

Notifiable Diseases ◽

Health Practitioners ◽

Public Health Practitioners

ABSTRACT ObjectivesUnderlying the delivery of services by the universal Canadian health care system are a number of rich secondary administrative health data sets which contain information on persons who are registered for care and details on their contacts with the system. These datasets are powerful sources of information for investigation of non-notifiable diseases and as an adjunct to traditional communicable disease surveillance. However, there are gaps between public health practitioners, access to these data, and access to experts in the use of these secondary data. The data linkage requires in-depth knowledge of these data including usages, limitations and data quality issues and also the skills to extract data to support secondary usage. OLAP reports have been developed to support operation needs but not on advanced analytics reports for surveillance and cohort study. To fill these gaps, we developed a set of web-based modular, parameterized, extraction and reporting tools for the purpose of: 1) decreasing the time and resources necessary to fill general secondary data requests for public health audiences; 2) quickly providing information from descriptive analysis of secondary data to public health practitioners; 3) informing the development of data feeds for continued enhanced surveillance or further data access requests; 4) assisting in preliminary stages of epidemiological investigations of non-notifiable diseases; and, 5) facilitating access to information from secondary data for evidence-based decision making in public health. ApproachWe intend to present these tools by case study of their application to small area analysis of secondary data in the context of air quality concerns. Data sources include individuals registered for health care coverage in BC, hospital separations, physician consultations, chronic disease registries, and drugs dispensation. Data sets contain complete information from 1992. Data were extracted and analyzed to describe the occurrence of health service utilization for cardiovascular and respiratory morbidity. Analysis was undertaken for BC residents in areas identified by local public health as priorities for monitoring. Health outcomes were directly standardized by age and compared to provincial trends by use of the comparative morbidity figure. ResultsResults will include descriptive epidemiological analysis of secondary data relating to respiratory and cardiovascular morbidity in the context of air quality concerns, summary of next steps, as well as an assessment of tool performance. ConclusionsWhere adopted tools such as these can make information from secondary data more accessible to support public health practice, particularly in regions with low analytical or epidemiological capacity.

Download Full-text

Tuberculosis surveillance and its discontents: the ethical paradox

The International Journal of Tuberculosis and Lung Disease ◽

10.5588/ijtld.17.0844 ◽

2020 ◽

Vol 24 (5) ◽

pp. 9-14

Author(s):

R. Bayer ◽

A. L. Fairchild ◽

M. Zignol ◽

K. G. Castro

Keyword(s):

Public Health ◽

Public Health Surveillance ◽

Ethical Issues ◽

Human Subjects ◽

Public Health Practice ◽

Health Surveillance ◽

World Health ◽

Ethical Review ◽

Health Practice ◽

Health Organization

In June 2017, the World Health Organization issued the Guidelines on Ethical Issues in Public Health Surveillance. Using the frame of public health ethics, the guidance declared that countries have an affirmative duty to undertake surveillance and that the global community had an obligation to support those countries whose resources limited their capacity. The centrality of TB surveillance has long been recognized as a matter of public health practice and ethics. Nevertheless, contemporary global realities make clear that TB surveillance falls far short of the goal of uniform notification. It is this reality that necessitated the paradoxical turn to research studies that require informed consent and human subjects' ethical review, the very burdens that mandated notification were designed to overcome.

Download Full-text

Knowledge brokering on infectious diseases for public health

Canada Communicable Disease Report ◽

10.14745/ccdr.v47i03a06 ◽

2021 ◽

Vol 47 (3) ◽

pp. 161-165

Author(s):

Margaret Haworth-Brockman ◽

Yoav Keynan

Keyword(s):

Public Health ◽

Severe Acute Respiratory Syndrome ◽

Infectious Diseases ◽

Knowledge Translation ◽

Public Health Practice ◽

Health Practice ◽

Knowledge Brokering ◽

Health Practitioners ◽

Set Up ◽

Public Health Practitioners

The National Collaborating Centres (NCCs) for Public Health (NCCPH) were established in 2005 as part of the federal government’s commitment to renew and strengthen public health following the severe acute respiratory syndrome (SARS) epidemic. They were set up to support knowledge translation for more timely use of scientific research and other knowledges in public health practice, programs and policies in Canada. Six centres comprise the NCCPH, including the National Collaborating Centre for Infectious Diseases (NCCID). The NCCID works with public health practitioners to find, understand and use research and evidence on infectious diseases and related determinants of health. The NCCID has a mandate to forge connections between those who generate and those who use infectious diseases knowledge. As the first article in a series on the NCCPH, we describe our role in knowledge brokering and the numerous methods and products that we have developed. In addition, we illustrate how NCCID has been able to work with public health to generate and share knowledge during the coronavirus disease 2019 (COVID-19) pandemic.

Download Full-text

The Role of State Law in Protecting Human Subjects of Public Health Research and Practice

The Journal of Law Medicine & Ethics ◽

10.1111/j.1748-720x.2003.tb00132.x ◽

2003 ◽

Vol 31 (4) ◽

pp. 654-662 ◽

Cited By ~ 8

Author(s):

Scott Burris ◽

Lance Gable ◽

Lesley Stone ◽

Zita Lazzarini

Keyword(s):

Public Health ◽

Human Subjects ◽

Public Health Practice ◽

Public Health Research ◽

Health Practice ◽

Research Subjects ◽

Common Rule ◽

Public Health Agencies ◽

Specimen Collection ◽

The Common

“Public health practice” consists of activities and Programs managed by public health agencies to promote health and prevent disease, injury, and disability. Some of these activities might be deemed to fit within the broad definition of “research” under federal regulations, known as the Common Rule, designed to protect human research subjects. The Common Rule defines research as “a systeniatic investigation, including research development, testing and evaluation, designed to develop or contribute to generalizable knowledge.” Public health activities that might under some circumstances be considered research include disease reporting, review of medical records, surveys, interviews, focus groups, specimen collection (blood, urine, etc.), and laboratory testing (both identifiable and anonymous).There are questions about the extent to which the Common Rule applies or was intended to apply to public health practice: and it has been suggested in any case that Common Rule regulation of public health practice may not be socially optimal for both practical and principled reasons.

Download Full-text

Ethics of Population-Based Research

The Journal of Law Medicine & Ethics ◽

10.1111/j.1748-720x.2007.00138.x ◽

2007 ◽

Vol 35 (2) ◽

pp. 295-299 ◽

Cited By ~ 11

Author(s):

Holly A. Taylor ◽

Summer Johnson

Keyword(s):

Public Health ◽

Health Research ◽

Ethical Issues ◽

Human Subjects ◽

Public Health Practice ◽

Public Health Research ◽

Population Based ◽

Health Practice ◽

Ethical Implications ◽

Definition Of

Multiple scholars and institutions have asked what distinguishes public health research from public health practice. Most often, they ask in order to have a clear definition of what one does in various public health settings to assess oversight and/or regulation of human subjects research. More importantly, however, whether something is considered public health research or public health practice has real ethical implications in terms of the general moral considerations at stake and the obligations of public health researchers/practitioners to the populations they serve or study.Numerous examples in recent history of research ethics, including the Kennedy Krieger Lead Abatement Study and EPA’s Children’s Environmental Exposure Research Study (CHEERS), suggest that an exploration of the ethics of public health, or more generally population-based research, may be warranted. Although we acknowledge that there are important ethical issues to consider in the implementation of public health practice, we leave that discussion for other authors.

Download Full-text

Assessing Laws and Legal Authorities for Public Health Emergency Legal Preparedness

The Journal of Law Medicine & Ethics ◽

10.1111/j.1748-720x.2008.00256.x ◽

2008 ◽

Vol 36 (S1) ◽

pp. 23-27 ◽

Cited By ~ 2

Author(s):

Brian Kamoie ◽

Robert M. Pestronk ◽

Peter Baldridge ◽

David Fidler ◽

Leah Devlin ◽

...

Keyword(s):

Public Health ◽

Public Health Practice ◽

The United States ◽

Health Practice ◽

Public Health Agencies ◽

State Constitutions ◽

Public Health Infrastructure ◽

Health Agencies ◽

Health Practitioners ◽

Public Health Practitioners

Public health legal preparedness begins with effective legal authorities, and law provides a key foundation for public health practice in the United States. Laws not only create public health agencies and fund them, but also authorize and impose duties upon government to protect the public's health while preserving individual liberties. As a result, law is an essential tool in public health practice and is one element of public health infrastructure, as it defines the systems and relationships within which public health practitioners operate.For purposes of this paper, law can be defined as a rule of conduct derived from federal or state constitutions, statutes, local laws, judicial opinions, administrative rules and regulations, international codes, or other pronouncements by entities authorized to prescribe conduct in a legally binding manner. Public health legal preparedness, a subset of public health preparedness, is defined as attainment of legal benchmarks within a public health system.

Download Full-text

ETHICAL ANALYSIS IN PUBLIC HEALTH PRACTICE: A MULTI-SECTORAL MIXED-METHODS STUDY

Clinical & Investigative Medicine ◽

10.25011/cim.v31i4.4820 ◽

2008 ◽

Vol 31 (4) ◽

pp. 19

Author(s):

Pakes B Upshur

Keyword(s):

Public Health ◽

Public Health Practice ◽

Health Practice ◽

Structured Interviews ◽

Ethical Awareness ◽

Public Health Decision ◽

Health Practitioners ◽

Value Judgements ◽

Health Decision ◽

Public Health Practitioners

Rationale: All decisions in public health practice involve implicit value judgements, and many involve explicit reference to ethical principles. Despite the increased awareness, interest and literature in Public Health Ethics in the past decade, there remains little understanding of what public health practitioners or trainees mean by ethics, what meta-ethical foundations shape their approach to ethical dilemmas, and what prior training in ethics they have had or wish to have. This study aims to answer some of these questions and will serve as the basis for the development of resources to aid public health decision-making. Method: Qualitative and quantitative data were collected from public health practitioners by means of paper and web-based surveys, as well as structured interviews. Data was coded and analysed using SPSS 15. Results: 16/20 trainees, 70/150 Canadian practitioners, and 508/2058 American practitioners responded to the survey; 10 interviews were conducted. There was remarkable heterogeneity of responses regarding prioritization of values and meta-ethical justification of ethical norms. Respondents reported little training in ethics and considerable in enhancing their skills. Conflict between ethical imperatives and the law were a prominent feature of American, but not Canadian respondents. Conclusions: Public Health practitioners hold a variety of disparate views regarding ethics in public health. These translate into different understandings of the goals and means of public health, with far reaching implications in all spheres of practice. A Public Health Ethical Reflection tool was developed to enhance ethical awareness in goal setting, planning and implementation of public health interventions.

Download Full-text