A History of the Present Illness: Book discussions are being planned for September and October
A History of the Present Illness, a collection of short stories by Louise Aronson, M.D., M.F.A., is the One Community/One Book selection for Fall of 2013. Fifteen volunteer book discussion leaders have registered to attend training in early September. Dates and times of public book discussions will be announced later in the month.
It is still possible to register for the workshop, Talking About Books Over Lunch: A Workshop for Discussion Group Leaders and Hosts. Workshops will be offered Wednesday, September 4 at 3:00 p.m., and Friday, September 6 at noon.
Louise Aronson will be the keynote speaker at the One Community/One Book author event sponsored by the Center for Medical Humanities & Ethics and The Libraries, which will take place Thursday, November 14, 2013 at 5:30 p.m. in the Holly Auditorium.
One Community/One Book is made possible in part by a grant from Humanities Texas, the state affiliate of the National Endowment for the Humanities.
Mary stood beside Wilbur, waiting as he sewed Henrietta’s abdomen closed. She wanted to run out of the morgue and back to the lab, but instead, she stared at Henrietta’s arms and legs — anything to avoid looking into her lifeless eyes. Then Mary’s gaze fell on Henrietta’s feet, and she gasped: Henrietta’s toenails were covered in chipped bright red polish.
“When I saw those toenails,” Mary told me years later, “I nearly fainted. I thought, Oh jeez, she’s a real person. I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.” [pp. 90-91]
Despite all the precautions taken by my medical school, my cadaver hardly remained an impersonal corpse with anonymous extremities. I remember unzipping the white bag that held her and being surprised by her thin arms. Her fingers were long and slender, with delicate, pointed tips; her nails had been filed into fine ovals and painted with coral nail polish. It was probably time for another manicure, as just above her neatly maintained cuticles were slender little half-moons of bare pink nail. [p. 13]
Like Pauline Chen’s book, Rebecca Skloot’s book examines an important tension that exists in research and clinical practice. Both clinicians and researchers must balance the need for detachment and objectivity against the need to understand and empathize with patients and subjects to ensure effective and ethical practice.
Have you ever had moments like those experienced by Mary Kubicek and Pauline Chen in these passages? Has a certain detail or realization struck you with an important insight about a patient or research subject? Bearing in mind the importance of protecting privacy, describe the effect that experience had on you in the comments below.
In response to the Southam situation, the NIH investigated all their grantee institutions and found that only nine out of fifty-two had any policy in place to protect the rights of research subjects. Only sixteen used consent forms. The NIH concluded: “In the setting in which the patient is involved in an experimental effort, the judgment of the investigator is not sufficient as a basis for reaching a conclusion concerning the ethical and moral set of questions in that relationship.”
As a result of its investigation, the NIH said that to qualify for funding, all proposals for research on human subjects had to be approved by review boards — independent bodies made up of professionals and laypeople of diverse races, classes, and backgrounds — to ensure that they met the NIH’s ethics requirements, including detailed informed consent.
Scientists said medical research was doomed. In a letter to the editor of Science, one of them warned, “When we are prevented from attempting seemingly innocuous studies of cancer behavior in humans … we may mark 1966 as the year in which all medical progress ceased.” [p. 135]
Thinking back over the last 44 years of medical research, do you feel that the institutional review boards (IRBs) have generally been an obstruction to medical progress, or net benefit to medical progress? What lessons does this experience offer about the relationship between research and regulation? Please share your responses by leaving a comment on this post.
Note: For more on Southam’s studies, Rebecca Skloot’s notes [p. 345] recommend Jay Katz’s book Experimentation with Human Beings, which you can find at the Briscoe Library at call number W 20.5 K19e 1972.
George Otto Gey (portrait from Johns Hopkins Medical Archives)
In the end, Gey made a comfortable salary from Hopkins, but he wasn’t wealthy. He and Margaret lived in a modest home that he bought from a friend for a one-dollar down payment, then spent years fixing up and paying off. Margaret ran the Gey lab for more than a decade without pay. Sometimes she couldn’t make their house payments or buy groceries because George had drained their account yet again buying lab equipment they couldn’t afford. On their thirtieth wedding anniversary, George gave Margaret a check for one hundred dollars, along with a note scribbled on the back of an aluminum oxide wrapper: “Next 30 years not as rough. Love, George.” Margaret never cashed the check, and things never got much better.
Various spokespeople for Johns Hopkins, including at least one past university president, have issued statements to me and other journalists over the years saying that Hopkins never made a cent off HeLa cells, that George Gey gave them all away for free… What we do know is that today, Invitrogen sells HeLa products that cost anywhere from $100 to nearly $10,000 per vial. A search of the U.S. Patent and Trademark Office database turns up more than seventeen thousand patents involving HeLa cells. And there’s no way to quantify the professional gain many scientists have achieved with the help of HeLa. [pp. 193-194]
George Gey is an intriguing character who makes a number of appearances throughout Skloot’s book. Gey’s early practice in distributing HeLa cells is described back in Chapter 7, on pages 57 and 58. In Chapter 24, Skloot discusses the Lacks family’s suspicions that Gey either participated in or facilitated the “robbing” of Henrietta’s cells for financial gain, and on pages 102-103 she discusses Dr. Gey’s regrets at having made the cells freely available and what it may have cost him in terms of publication of his own research findings.
To you, does the George Gey portrayed in this book represent the highest ideals of medical research, or an outdated mode of research practice that is better left in the past? Do you think health science researchers today should aspire to be more like George Gey, or less like him? Why?
Chapter 25: "Who Told You You Could Sell My Spleen?"
In Chapter 25 of The Immortal Life of Henrietta Lacks, Rebecca Skloot tells the stories of two other individuals who have donated biological material that became the basis of valuable cell lines: John Moore and Ted Slavin. How are these stories similar to that of Henrietta Lacks? How are they different?
As Skloot explains in the Afterword to the book, with regard the use of biological samples for research, “there are, essentially, two issues to deal with: consent and money.” [p. 317] But as she explores in the Afterword, those essential issues are intertwined with others, including privacy of genetic information in those samples, rights of donors to dictate the types of research for which their tissues will be used, and continuing concerns in many religious traditions about the sacred disposition and final rest of a deceased person’s body.
How is tissue culture similar to and different from organ donation in regard to these areas of concern? Are there ways for researchers to ethically address these concerns — both sacred and secular — in a manner that allows for the sustainable continuation of research based on tissue samples?
Eventually I told her she could even come with me when I did some of my research if she wanted… We always took two cars because Deborah didn’t trust me enough to ride with me yet. [pp.252-253]
A key difference between The Immortal Life of Henrietta Lacks and other previous works about Henrietta is the relationship that developed between Rebecca Skloot and the members of the Lacks family. In the following clip from ReadRollShow, Rebecca Skloot tells an interesting story about one particular incident involving a graveyard, ticks, salad dressing, persistence and the power of shared experience:
If you’re interested in more stories from Rebecca Skloot, she will be the featured speaker at the Frank Bryant Jr., M.D. Memorial Lecture on Friday October 15 at 12:30pm, hosted by the UT Health Science Center’s Center for Medical Humanities & Ethics. The lecture will take place in the Health Science Center Auditorium on the Long Campus in the South Texas Medical Center, and will also be telecast live to the Regional Academic Health Center in Harlingen, the Laredo Regional Campus and the Southwest Foundation for Biomedical Research.
“Within the DNA in that picture is all the genetic information that made Henrietta Henrietta,” Cristoph told them. “Was your mother tall or short?”
“And she had dark hair, right?”
We all nodded.
“Well, all that information came from her DNA,” he said. “So did her cancer — it came from a DNA mistake.”
Deborah’s face fell. She’d heard many times that she’d inherited some of the DNA inside those cells from her mother. She didn’t want to hear that her mother’s cancer was in that DNA too.
“Those mistakes can happen when you get exposed to chemicals or radiation,” Cristoph said. “But in your mother’s case, the mistake was caused by HPV, the genital warts virus. The good news for you is that children don’t inherit those kinds of changes in DNA from their parents – they just come from being exposed to the virus.”
“So we don’t have the thing that made her cells grow forever?” Deborah asked. Cristoph shook his head. “Now you tell me after all these years!” Deborah yelled. “Thank God, cause I was wonderin!”
She pointed at a cell on the screen that looked longer than the others. “This one is cancer, right? And the rest are her normal ones?”
“Actually, HeLa is all cancer,” Cristoph said.
“Wait a minute,” she said, “you mean none of our mother regular cells still livin? Just her cancer cells?”
“Oh! See, and all this time I thought my mother regular cells still livin!” [pp. 264-265]
Such a simple explanation — but it came in 2001, 50 years after the cells were harvested, and 28 years after Lacks family members were first contacted about the HeLa cells. Those 28 years were filled with ongoing worry, suspicion, and fear — even notions that Henrietta’s clones were walking the streets somewhere in the world — that could all have been potentially avoided with the simple explanation that Dr Lengauer gave Deborah and Zakariyya that day. Why can it take so long for conversations like this one to occur?
Note: see Rebecca Skloot’s photos from the day she described in this chapter, in her Flickr stream:
“As we left Crownsville, Deborah thanked Lurz for the information, saying, ‘I’ve been waiting for this a long, long time, Doc.’ When he asked if she was okay, her eyes welled with tears and she said, ‘Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.’” [p. 276]
The journey to making peace with history and learning from it can be a long and very personal one — Deborah’s family are all at different phases of that same journey. Historians like Rebecca Skloot, as well as librarians, archivists and museum curators all find that the very documents and artifacts that can be most helpful for some people on that journey can be most offensive, disgusting or hateful to others. How can we present historical realities in a way that acknowledges and respects that difference?
“Thank you Lord for giving me this information about my mother and my sister, but please HELP ME, cause I know I can’t handle this burden by myself. Take them CELLS from me, Lord, take that BURDEN. Get it off and LEAVE it there! I can’t carry it no more, Lord. You wanted me to give it to you and I just didn’t want to, but you can have it now, Lord. You can HAVE IT! Hallelujah, amen.”
For the first time since Gary stood from his chair, he looked straight at me.
I’d been watching all this from a recliner a few feet away, dumbfounded, terrified to move or make noise, frantically scribbling notes. In any other circumstance I might have thought the whole thing was crazy. But what was happening between Gary and Deborah at that moment was the furthest thing from crazy I’d seen all day. As I watched, all I could think was, Oh my god . . . I did this to her.
Gary stared into my eyes as he hugged Deborah’s sobbing body and whispered to her, “You’re not alone.”
Looking at me, Gary said, “She can’t handle the burden of these cells no more, Lord! She can’t do it!” Then he raised his arms above Deborah’s head and yelled, “LORD, I KNOW you sent Miss Rebecca to help LIFT THE BURDEN of them CELLS!” He thrust his arms toward me, hands pointed at either side of my head. “GIVE THEM TO HER!” he yelled. “LET HER CARRY THEM.”
I sat frozen, staring at Gary, thinking, Wait a minute, that wasn’t supposed to happen!
Deborah stepped away from Gary’s embrace, shaking her head, wiping her eyes, and yelling, “Phew!” They both laughed. “Thanks, Cuz,” she said, “I feel so light!”
“Some things you got to release,” Gary said. “The more you hold them in, the worse you get. When you release them, they got to go somewhere else. The Bible says He can carry all that burden.” [pp. 292-293]
As it happened, Rebecca’s tape recorder was running during this interaction, as well as during Deborah’s and Zakariyya’s meeting with Cristoph Lengauer described in Chapter 32. You can hear portions of those recordings — Deborah’s voice, Gary’s singing, the sounds of Lengauer’s lab — toward the end of this engrossing audio story on Henrietta Lacks produced by the WNYC public radio program Radiolab:
Remember — don’t miss your chance to hear Rebecca Skloot live at the Frank Bryant Jr., M.D. Memorial Lecture, tomorrow (Friday October 15) at 12:30pm, hosted by the UT Health Science Center’s Center for Medical Humanities & Ethics. The lecture will take place in the Health Science Center Auditorium on the Long Campus in the South Texas Medical Center, and will also be telecast live to the Regional Academic Health Center in Harlingen, the Laredo Regional Campus and the Southwest Foundation for Biomedical Research.
“Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge. Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment. And, as Howard Jones once wrote, ‘Hopkins, with its large indigent black population, had no dearth of clinical material.’” [pp. 29-30]
From our perspective in 2010, the above notion offends our sense of ethics on multiple levels — informed consent, economic justice, racial equality, and more. Yet at the time, it was perfectly normal and carried an implicitly understood moral justification. What practices do we take for granted and/or similarly justify today that our colleagues of the year 2070 might look back on and shake their heads? Please add your comments to the discussion.