TAG ARCHIVES FOR NIH

14
Jul2021

We are part of a research group at Columbia University Irving Medical Center that is participating in the NIH-sponsored Electronic Medical Records and Genomics (eMERGE) Network study. As part of our site’s exploration of the ethical, legal, and social issues involved in research using polygenic risk scores (PRS), we are conducting a series of focus groups with stakeholders to explore views on these issues. We are interested in IRB members’ perspectives on the ethical and regulatory challenges that can arise from a study like this. Read more

15
Dec2020

On October 29, the Final NIH Policy for Data Management and Sharing was published. It will require “researchers to prospectively plan for how scientific data will be preserved and shared through submission of a Data Management and Sharing (DMS) Plan” and will apply to any NIH-funded or -conducted research that generates scientific data. It will be effective as of January 25, 2023. The final rule isn’t perfect: there is no mandate to share data, and grantees will need guidance on crucial questions of communicating these complex issues to participants. Nevertheless, the rule represents a positive step toward expanded, responsible sharing of data, which is critical to both good science and just treatment of research subjects.  Read more

28
May2020

Researchers in the Department of Bioethics at the National Institutes of Health invite IRB members to participate in a short study related to pediatric research ethics. The purpose of the study is to explore and compare the views of members of the general public and the views of members of IRBs on various types of medical research with children. The information collected is intended to inform how IRBs evaluate the ethical acceptability of proposed medical research in the future. Read more

30
Mar2020

PRIM&R is generally very pleased with the breadth and aims of the framework. The framework’s third objective, which emphasizes integrity, accountability, and social responsibility in the conduct of science, demonstrates NIH’s clear commitment to the idea that good science is responsible science. Read more