Unproven Stem Cell-Based Interventions: Advancing Policy through Stakeholder Collaboration

A growing number of U.S. stem cell clinics treat a variety of illnesses and injuries, yet few have conducted the necessary clinical research to ensure safety and efficacy. The authors highlight the importance of collaboration between scientists, regulators, patients and patient advocates in developing effective policies and practices for unproven stem cell-based intervention clinics

Impact of education on APOL1 testing attitudes among prospective living kidney donors

It is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants' desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, "becoming aware of the potential risk of kidney disease among your immediate family" was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was "some transplant centers may not allow you to donate to a loved one". This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing

Neglected Tropical Diseases and the United States South: Policy and Professional Responses to Improve Health in the South

This poster documents the presence and impact of neglected tropical diseases in the southern United States and offers examples of their negative effect on residents. A combination of public policy and changes in professional self-regulation are required to effectively combat NTDs in the South.

Ethical Considerations for the Creation of a National Neglected Tropical Disease Policy

The term “neglected tropical diseases” (NTDs) refers to a group of parasitic, viral, and bacterial diseases that cause substantial and often debilitating illnesses, affecting more than one billion people globally. In the United States, addressing NTDs focuses largely on developing safe and effective mechanisms to prevent and treat NTDs. Furthermore, new or existing treatments must be made available to those in need—often people living in poverty or extreme poverty (less than $2 a day). But research, development, and delivery of these interventions is costly and relies mostly on funding from the federal government. With pressure to limit government expenditures, decisions regarding the allocation of limited resources entail balancing priorities, which involve many, often unarticulated or implicit, ethical judgments. This report highlights some of the central ethical issues pertaining to NTD policy development and argues that ethical considerations should be included in the policy development process. We conclude that the United States should develop an NTD policy to further reduce the prevalence and impact of NTDs both within and outside our borders