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by Jim Gearhart

Exploring the Ethics of Big Data and Biological Samples

Do your research trials involve the collection of biological samples for the possibility of future study? Do your routine practices produce extra samples, or sets of information, that might help some field of research in the future? In the current day of research and medical practice, chances are the answer is yes, and if it is, Quorum wants to help you understand the complex ethical issues involved. For one, be sure to see this month’s Quorum Forum newsletter, where Regulatory attorney Claire Carbary provides examples of what a consent form should say (and not say) about collecting samples for repositories. And after you’ve read that, consider signing up for our co-hosted Big Data and the IRB Conference on October 24.

Discussions of Big Data are everywhere. The proliferations of devices that can gather information, and the growing power of the tools that can analyze that data, raise a host of questions about what we should do with that gathered information. Hospitals and researchers around the world are collecting more and more information, and computing systems’ capabilities to exploit that wealth are expanding. The “Big” of Big Data goes beyond gigabytes or terabytes; the scope of Big now reaches the size of petabytes and exabytes. And as this universe of available information expands, we strive to appreciate the ethical consequences of what we can access and how. When collecting samples, when designing systems to store them, and when considering how to study them, when are more (or fewer) ethical protections necessary? The Big Data and the IRB Conference aims to help you understand the latest.

Big Data and the IRB is a one-day conference you can attend in-person in Boston, or online from anywhere. Quorum has teamed up with Boston University and the Massachusetts Society for Medical Research to provide an array of experts focusing on this intersection of gathered biological samples, Big Data analysis, and the ethical concerns of research involving people.

The conference will include—among others — Dr. Jerry Menikoff (MD, JD), the Director of OHRP, and Dr. Pearl O’Rourke, Director of Human Research Affairs at Boston’s Partners Healthcare System.  Drs. Menikoff and O’Rourke each bring a wealth of experience with research and research ethics. Enroll now to hear what they have to share.

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