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Author(s): Anonymous MPP Student License: Unless otherwise noted, this material is made available under the terms of the Creative Commons Attribution Share Alike 3.0 License: We have reviewed this material in accordance with U.S. Copyright Law and have tried to maximize your ability to use, share, and adapt it. Copyright holders of content included in this material should contact with any questions, corrections, or clarification regarding the use of content. For more information about how to cite these materials visit

Biobanking: Honoring Donors’ Rights

Biobank Basics October 29, Values & Ethics Collection of biological material and data Information available for research Have existed since the 1800s Registries and surveys prompted recent attention

Questions of Morality Building a Coalition of “Powerful” Cities October 29, Values & Ethics Consent procedures Confidentiality Research results Incidental findings

Consent Procedures Communicating the Cause October 29, Values & Ethics Blanket consent No restrictions on researchers European preference and emerging trend Tailored consent Choices about research types American preference

Consent Procedures Conducting Audits, Advancing Projects October 29, Values & Ethics Blanket consent disadvantages The more general, the less informed Only broad descriptions about the purpose are available

Consent Procedures & Confidentiality Advocating Policy Reforms October 29, Values & Ethics Tailored consent advantages Types of research Uses of data International sharing Commercial partners Link data to personal and medical information Can re-contact donors

Research Results Developing a Sustainable Business Plan October 29, Values & Ethics Normally published long after the study began Published in science journals Not always published No value Misleading information

Incidental Findings Ongoing Tasks and Responsibilities October 29, Values & Ethics Individual research participant Potential health or reproductive importance Discovered in the course of conducting research Beyond the aims of study

My Position Immediate Steps to Generate Energy October 29, Values & Ethics Reduced level of social benefit in return for honoring rights of donors

Biobanking: Honoring Donors’ Rights Questions and Conversation

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