Panel Discussion about Ethics
4/28/2014 7:00 PM - 9:00 PM
The story on the other side of research
On Monday April 28th the public is invited to join a panel of experts in a discussion about ethics and research, a key theme of this year’s Malden Reads choice, The Immortal Life of Henrietta Lacks by Rebecca Skloot. The discussion begins at 7 p.m., is free, and will take place in the Macarrio Room of the Malden Public Library.
Merriam-Webster’s defines ethics as, “rules of behavior based on ideas about what is morally good and bad” and adds that it is also the area of study or the branch of philosophy that deals with these matters. This definition acknowledges that rules are part of ethics. It also presumes that rules emerge in response to a sense of what is right. Is it possible then that something is unethical before the rule is constructed?
Knowing the story of Henrietta Lacks’ life, sickness, death, and family makes it easy to find fault with Dr. George Gey, the researcher who extracted cells from her body without her knowledge or permission. This was wrong we say, though his actions were within the norm of the day, not a violation or breech of policy. He himself did not even benefit monetarily by his actions. The HeLa cells he extracted have enabled medical breakthroughs in treatment of various forms of cancer, polio, hemophilia, etc. Their discovery and use have saved lives. So what was his ethical transgression?
Many agree he should have sought her consent. The family should have been told or perhaps been compensated monetarily in some way. The full answer to this ethical dilemma comes from Skloot through Elie Wiesel. His inspiring admonition, an ideal for how we should not only treat but see our fellow humans captures the essence of what ethics enables us to be for one another.
“We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph.” Elie Wiesel from The Nazi Doctors and the Nuremberg Code)
What enables and thwarts such regard in the world of research? What of the system makes a researcher’s process ethically challenging or easier? What are the spoken and unspoken considerations that give depth to questions of benefit, value, consequence, in various research discoveries or processes? How do researchers see beyond their often highly focused, everyday tasks to grasp beyond abstraction to real lives, stories, and triumphs? So much of our health comes admittedly by the hard work of researchers. And yet, the call to rigor in the ethical process must go on as we continue to arrive at places where rules do not exist.
Our distinguished panel will speak to these and other questions. They are Teresa Doksum, PhD., M.P.H. - Director of Research Ethics, Institutional Review Board Chair at ABT Associates Inc.; Noel Casey, PhD - Analytical Director, Center for Biometals & Metallomics (CBM) Boston University School of Medicine; Kerstin Lindblad-Toh, PhD, director of Science for Life Laboratory Uppsala at Uppsala University, & of Vertebrate Genome Biology at the Broad Institute, and Elissa Weitzman, MD, of Children’s Hospital in Boston and Harvard Medical School (moderator).
To pose a question to the coming panelists before the discussions, go to the blog, send a tweet to @maldenreads or email maldenreads@gmail.com.
For more information about Malden Reads, the featured selections and upcoming events, visit www.maldenreads.org, follow us on Twitter @MaldenReads, friend us on Facebook or join our mailing list maldenreads@gmail.com.
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