This month's research ethics roundup covers scientists' problems with ClinicalTrials.gov, thoughts from the inventor of CRISPR, the FDA's "Animal Rule," and so-called "parachute science." Read more
TAG ARCHIVES FOR biobanking
This edition of Research Ethics Roundup covers a UK political party's position on animal testing, management philosophies for databank access, tariffs' effects on nonhuman primate research, and an activist push for testing Duchenne muscular dystrophy cures in girls. Read more
As research activities go, the use of archival tissue has ranked pretty low on my list of ethical concerns. After all, the tissue has been or will be collected during a clinical procedure that patients would undergo regardless of their participation in research; there is no additional physical risk to subjects, and the primary ethical dilemma (or so the thinking goes) is the potential for a breach of confidentiality. By the end of the full-day preconference program Biobanking in an Era of Precision Medicine Research: Approaches to the Ethical, Regulatory, and Practical Challenges, the presenters had changed my thinking on this topic. I now have a much better appreciation of the complex relationship between researchers, patient-participants, pathologists, and IRBs, particularly when specimens will be used to investigate precision medicine applications. Read more
As leaders in the development of best practices for repositories, the International Society for Biological and Environmental Repositories (ISBER) recently announced the release of The ISBER Best Practices: Recommendations for Repositories, Fourth Edition. In addition to covering a wide range of scientific and technical issues, The ISBER Best Practices also covers various ethical, legal and social issues (ELSI) related to biorepository operation. Read more
At the end of the day—or at least the end of this day, one spent considering contemporary issues in biobanking—I can’t help but ask. Let me give some perspective, though, on how I got here.
On one side, there is a concern about subjecting others (subjecting ourselves?) to some less or more tolerable "regime of governance" in the biobanking process. Those regimes, though, take on greater and [...] Read more