by Andy Burman, PRIM&R Blog Squad member
PRIM&R is pleased to bring you blog posts from the PRIM&R Blog Squad during the 2010 Advancing Ethical Research Conference. The PRIM&R Blog Squad has blogged every day from the conference, and these are the final onsite posts. Continue to check back for more updates from the Blog Squad.
As I wrapped up my first PRIM&R AER Conference yesterday, I thought about the primary lessons learned, and considered what events in particular will have the most affect on me personally and in my role of protecting human subjects. There have been many “A-ha” moments, several humorous instances, and even a dash of disagreement and frustration. However, none of these single moments will stick with me with the veracity of the experience of hearing the keynote addresses of Rebecca Skloot and Eva Mozes Kor.
Some of people outside the research world may recognize the name Rebecca Skloot from her appearance on Oprah. Her book, The Immortal Life of Henrietta Lacks, hit bookstores earlier this year and has been rising in popularity both inside and outside of the research community. The nonfiction story of Henrietta Lacks, a young uneducated woman who developed cervical cancer in her early thirties and died quickly after her diagnoses, exposes many of the injustices that were committed against Lacks and her family after a tissue sample of her cervical cancer was taken, and reproduced exponentially for decades. Now known as the HeLa cell line, this all took place without her or her family’s knowledge.
Ms. Skloot, who is a young woman in her thirties , intrigued me very much during her presentation. She strikes me as the Erin Brockovich of my generation: a young woman working against the odds for many years to uncover an injustice tell the story of someone else. She read moving passages from the book, stark reminders of the world of Jim Crow and the research conducted at that time. I haven’t yet read The Immortal Life of Henrietta Lacks, but it has risen to the top of my reading list for when I return home.
The other most powerful conference experience was listening to the remarks of Eva Mozes Kor. Her speech was appropriate for everyone regardless of their involvement, or lack thereof, in research. Ms. Mozes Kor was a preteen when she and her twin sister, along with the rest of their family was rounded up by the Nazis and sent to Auschwitz. Because they were twins, she and her sister were separated from the rest of the family, none of whom they would ever see again.
The twins were enrolled as subjects of Nazi research. Both of the twins nearly died as result of injections given to them by the Nazis, but they were able to survive until Auschwitz was liberated. Decades later, Ms. Mozes Kor went on to donate an organ to her sister, and to do another amazing and important thing: forgive the Nazi physician, Dr. Mengele, who was the investigator in the project from which she nearly died.
After the address, an attendee asked Ms. Mozes Kor if she had ever been nominated for the Nobel Peace Prize. There was general laughter in the room, but in reality, could there be a candidate more fundamentally qualified for the honor? How many Holocaust research subjects that go on to be an organ donor and forgive the people who harmed them to the point of near-death do you know? It can’t get more selfless than that.
These two moving presentations will stick with me forever. There are so many lessons to be learned from each of these stories that one cannot possibly summarize it concisely, but I’ll try anyway.
Work for justice. Offer forgiveness.