Bioethic papers

Federal Data Strategy - Data Ethics Framework

This document provides comprehensive guidance for ethical decision-making regarding data use within the U.S. federal government. It outlines key ethical principles and practices essential for managing and using data, especially in the public sector. The full document can be accessed by downloading it from the updated link here.

Towards Better Governance of Human Genomic Data

This paper discusses the increasing collection, storage, and use of human genomic data for biomedical research. It emphasizes the need for effective governance frameworks to balance the objectives of enabling broad access to these data while ensuring protection against potential harms. For more detailed information, please refer to the full document here.

Developing Ethics and Equity Principles, Terms, and Engagement Tools to Advance Health Equity and Researcher Diversity in AI and Machine Learning: Modified Delphi Approach

This paper focuses on the ethical challenges in AI and machine learning, particularly in health equity and research diversity. It presents the development of ethics and equity principles, a glossary, and an interview guide, all aimed at ensuring fairness and ethical considerations in AI and ML applications. For more information, please refer to the full document here.

Developing Ethics and Equity Principles, Terms, and Engagement Tools to Advance Health Equity and Researcher Diversity in AI and Machine Learning: Modified Delphi Approach

This paper focuses on creating ethical and equitable AI and ML applications in health research. It outlines the work of the AIM-AHEAD Ethics and Equity Workgroup (EEWG), which developed a set of ethics and equity principles, a glossary of terms, and an interview guide. These tools aim to address diversity and inclusivity in AI and ML research, particularly in health equity. The principles and glossary are designed to guide stakeholders in ethical AI/ML development, ensuring fair and equitable applications in health research and education. For more detailed information, please refer to the full document here.

The Role of Ethics in Data Governance of Large Neuro-ICT

This paper explores ethical issues in data governance for large neuro-ICT (information and communication technology) projects. It reviews existing principles, points out gaps, and offers suggestions for ethical collaboration in complex regulatory environments. The study finds that while some issues like data protection and work attribution are covered, many ethical concerns remain unaddressed, and policy implementation is often unclear. The paper highlights the need for clear inclusion of ethical issues in data governance policies, especially as neuro-ICT research grows and involves more international participants. It calls for a common understanding in data governance, considering the varied ethical challenges posed by different data types (human, animal, technical) used in neuro-ICT research. Read the full paper here.