Bartha Maria Knoppers

TL;DR: The HUGO ‘Statement on Benefit-Sharing’ examines the issues of defining community, common heritage, distributive justice and solidarity before arriving at its conclusions in benefit-sharing.

TL;DR: A procedural framework for the three steps of feedback: assessment, re-identification, and communication is outlined and it is recommended that Research Ethics Boards should not be directly involved in the assessment of individual findings.

TL;DR: A study of 52 ENGAGE consent forms and information documents shows that a broad range of mechanisms were developed to enable secondary use of the data that are part of the ENGAGE Consortium, showing the inconclusive, and even contradictory, nature of guidelines and confirms the current lack of compatible regulations.

TL;DR: When a patient refuses to disclose genetic risk information to relatives, whether a patient's physician should or may disclose such information without the patient's consent will depend on the seriousness, the imminence and the preventability of the risk.

TL;DR: Widespread use of ADA-M will aid researchers in globally searching and prescreening potential data and/or biospecimen resources for compatibility with their research plans in a responsible and efficient manner, increasing likelihood of timely DAC approvals while also significantly reducing time and effort DACs, RECs, and IRBs spend evaluating resource requests and research proposals.