Save The Date: Making Science Work with Sir Paul M. Nurse

With Panelists:

  • Eric Lander, Broad Institute and Biology, MIT
  • Lisa Randall, Physics, Harvard University
  • Charles Rosenberg, History of Science, Harvard University

Moderated by: Sheila Jasanoff, Pforzheimer Professor of Science and Technology Studies, Harvard Kennedy School

Wednesday, February 6
5:00 – 7:00 pm

Pfizer Lecture Hall
Mallinckrodt Chemistry Lab B23
12 Oxford Street, Harvard University
Cambridge, MA

Making science work for human benefit requires making good decisions about what scientific research should be supported and giving good scientific advice for public policy. The term public good is meant in the widest possible sense, covering the contributions science makes to our culture and also the applications of science that benefit society: improving our health and quality of life, securing sustainability and protection of the environment, and driving innovation to support our economy.

Sir Paul Nurse is a British geneticist and cell biologist. He became the 60th President of The Royal Society in December 2010. As a geneticist, he studied the mechanisms which control the division and shape of cells. In 2001, he was awarded the Nobel Prize for Physiology or Medicine for the discovery of the key protein regulators of the cell cycle. He has been Professor of Microbiology at the University of Oxford, CEO of the Imperial Cancer Research Fund and Cancer Research UK, and President of The Rockefeller University, New York. Since 2011, he has been Director and CEO of the Francis Crick Institute in London. Nurse has received the Royal Society’s Copley Medal (2005), the French Legion d’Honneur (2002), and is a Foreign Honorary Member of the American Academy of Arts and Sciences (2006).  He was knighted in 1999 for services in cancer research and cell biology.

This event is organized by the Program on Science, Technology, and Society, at the Harvard Kennedy School and co-sponsored by the School of Engineering and Applied Sciences, the Graduate School of Design, and the Harvard University Center for the Environment.  For more information on Science, Technology, and Society events at Harvard University, please visit: www.ksg.harvard.edu This lecture and discussion is free and open to the public.

Contact: Lisa Matthews,  lisa_matthews at harvard.edu, 617-495-8883

Save the Date – May 17th “Issues and Case Studies in Clinical Trial Data Sharing – What Have We Learned?”

Please save the date for this upcoming conference at Harvard Law School on May 17, 2013:

Issues and Case Studies in Clinical Trial Data Sharing:

What Have We Learned?

Co-sponsored by the Multi-Regional Clinical Trial Center at Harvard University, and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School

LOCATION:  Wasserstein Hall, Milstein West A, Harvard Law School

1585 Massachusetts Avenue, Cambridge, MA

Speakers and registration information to be announced shortly

May 17, 2013 (8AM – 6PM)

Objectives:

  • To discuss opportunities for and implications of emerging clinical trial data disclosure standards
  • To review evidence from recent case studies in clinical trial data disclosure, especially related to disclosure of participant-level data
  • To review the rationale behind disclosure requirements of patient-level data and discuss whether the case studies demonstrate the goals have been met
  • To identify potential areas of collaboration among stakeholder groups, such as the formation of working groups to provide recommendations or standards in this area
  • To review variance in regulatory approaches and areas for possible harmonization
  • To identify other key areas of learning that may inform policy in this important area moving forward
  • To use conference findings as basis of a publication in a peer-reviewed journal that captures the case studies, provides insights into these issues and offers recommendations for moving forward

No Access to Medicines without Access to Research

by Adriana Benedict

In December, I wrote a blog post noting that access to biomedical research is critical not only for informed patient care, but also for the sustainable development of pharmaceutical R&D responsive to local needs, especially in developing countries.  In recent years, open access issues have taken on an increasingly important role in global health discussions.  In 2009, the Institute for Information Law and Policy, the Justice Action Center and Health Information for All 2015 made the case for a rights-based approach to the issue in a report called Access to Health Information under International Human Rights Law.  In 2011, a medical student in the Right to Research Coalition explained 6 Reasons Open Access Matters to the Medical Community.  And the 2012 WHO CEWG Report recommending a binding treaty on Research and Development to Meet the Needs of Developing Countries includes as one of its proposals “open approaches to research and development and innovation which include precompetitive research and development platforms, open source and open access schemes.”

In response to the increasing demand for open access to biomedical research, PLOS Medicine partnered with WHO to issue a call for papers “intended to culminate in an open-access collection of original research and commentary articles to coincide with the launch … [of] World Health Report 2012: No Health without Research.”  However, the 2012 World Health Report was unexpectedly called off to be replaced by a 2013 report on “contributions to research to universal health coverage,” a far less politically polarizing topic.  In its editorial response to the cancellation of the 2012 Report, PLOS Medicine noted that “The reasons for these delays and for the changes in scope of WHO’s flagship publication, are unclear,” not in the least because “Previous World Health Reports … have represented bold political statements.”

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Part II- Medicine’s Battle of the Experts: A Patient’s Perspective on Navigating Conflicting Medical Advice

In Part I, I described my testicular cancer diagnosis and pre-operation experience in an attempt to demonstrate how defragmentation in healthcare could reduce patient emotional and psychological stress.  In Part II, I describe my post-surgery experience, consulting specialists with conflicting opinions as to the optimal post-operation treatment regimen.

In various law school courses we discuss a problem sometimes referred to as the “battle of the experts.”  In a courtroom, a jury generally hears testimony from experts on both sides of a case, presenting different statistics and opinions for the jury to consider.  The jury, comprised of lay people, is likely ill-equipped to contextualize these opinions scientifically, and possibly resorts to heuristics, such as judging the experts’ levels of confidence, demeanors and comprehensibility, when deciding between them. A nuanced testimony delivered by a sweaty expert, when compared to a simple testimony delivered suavely, could be discredited for legally irrelevant reasons.[1]  As a patient weighing my post-surgery treatment options, I felt like a lay jury, asked to decide among the opinions of experts, with my own health hanging in the balance.

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