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Whole-Genome Sequencing for TB Source Investigations: Principles of Ethical Precision Public Health

May 26, 2021

BACKGROUND: Whole-genome sequencing (WGS) of Mycobacterium tuberculosis allows rapid, accurate inferences about the sources, location and timing of transmission. However, in an era of heightened concern for personal privacy and science distrust, such inferences could result in unintended harm and undermine the public´s trust. METHODS: We held interdisciplinary stakeholder discussions and performed ethical analyses of … Read more

Toward Better Governance of Human Genomic Data

January 15, 2021

Here, we argue that, in line with the dramatic increase in the collection, storage and curation of human genomic data for biomedical research, genomic data repositories and consortia have adopted governance frameworks to both enable wide access and protect against possible harms. However, the merits and limitations of different governance frameworks in achieving these twin … Read more

“Prevention” and Human Gene Editing Governance

January 15, 2021

The Holocaust and the racial hygiene doctrine that helped rationalize it still overshadow contemporary debates about using gene editing for disease prevention. In part, this is because prevention can mean 3 different things, which are often conflated. Phenotypic prevention involves modifying the expression of pathogenic DNA variants to forestall their clinical effects in at-risk patients. … Read more

A New Governance Overnance Approach to Regulating Human Genome Editing

December 10, 2020

For years, genomic medicine—medicine based on the growing understanding of the genetic contribution to many diseases and conditions—has been hailed as the future of medical treatment, but it has thus far had limited effect on day-to-day medical practice. The ultimate goal of genomic medicine has always been the ability not just to identify dangerous gene … Read more

Transparency, Trust, and Community Welfare: Towards a Precision Public Health Ethics Framework for the Genomics Era

November 23, 2020

Infectious disease control is experiencing a paradigm shift, as pathogen sequencing technologies and digital applications are increasingly implemented for control of diseases such as tuberculosis, Ebola, and COVID-19. A new ethical framework should be a critical part of this emerging paradigm to ensure that the benefit of precision public health interventions based on advances in … Read more

Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study

September 16, 2020

Background: Retention in HIV care is critical to maintaining viral suppression and preventing further transmission, yet less than 50% of people living with HIV in the United States are engaged in care. All US states have a funding mandate to implement Data-to-Care (D2C) programs, which use surveillance data (eg, laboratory, Medicaid billing) to identify out-of-care … Read more

Incidental Enhancements: A Neglected Governance Challenge for Human Genome Editing Research

June 25, 2020

The increasing pace and international diffusion of developments in human genome editing research have prompted ongoing efforts to develop responsible governance for such research. One point of broad agreement across these efforts is that human genome editing research should prioritize medical applications over attempts to enhance human traits because of the moral concerns the latter … Read more

Do Groups Have Moral Standing in Unregulated mHealth Research?

May 14, 2020

For the most part, discussions of the ethical, legal, and social implications (ELSI) of mHealth research have been preoccupied with the welfare and interests of individual participants — i.e., those who carry the devices running the programs that provide their health data to researchers. Since the ultimate benefits of mHealth research are so often framed … Read more

Expert Stakeholders’ Perspectives on a Data-to-Care Strategy for Improving Care Among HIV-Positive Individuals Incarcerated in Jails

May 1, 2020

Data-to-Care (D2C) uses surveillance data (e.g., laboratory, Medicaid billing) to identify out-of-care HIV-positive persons to re-link them to care. Most US states are implementing D2C, yet few studies have explored stakeholders’ perspectives on D2C, and none have addressed these perspectives in the context of D2C in jail. This article reports findings from qualitative, semi-structured interviews … Read more