Thursday, April 28, 2011

Haunted Hospitals and Patient Abuse

With so many aspects of The Immortal Life of Henrietta Lacks to discuss, the fate of Deborah's younger sister, Elsie, sometimes goes unmentioned. Elsie, committed to Crownsville Hospital Center at a young age, was likely abused and neglected prior to her death at the institution in 1955.

One UW professor has studied the connection between patient abuse and a seemingly unrelated topic: haunted hospitals. Dayle Delancey, a professor in the Department of Medical History and Bioethics, published a 2009 paper called “‘How Could It Not Be Haunted?’ The Haunted Hospital as Historical Record and Ethics Referendum.”

In this work, Delancey states that, "Medical ethicists and medical historians might be tempted to dismiss these depictions as mere vagaries of popular culture, but that would be an unfortunate oversight because haunted hospital lore memorializes historical claims of patient abuse, neglect, and maltreatment."

Delancey discusses one specific example at length: Danvers State Hospital in Massachusetts. This institution was opened as an insane asylum in 1878, and was closed to patients in 1992. Reports of patient abuse and neglect first began to surface in the 1890s. The hospital, near a Salem Witch Trials location, was already nicknamed "The Witch's Castle," and combined with the stories of abuse, ghost stories flourished throughout the decades.

Delancey maintains that "the public has not only memorialized those patient populations whom historical instances of purported abuse, neglect, and maltreatment once marginalized, but has also given those patients voice, agency, and, by extension, a measure of justice."

Elsie Lacks, Henrietta's youngest child, had been committed to Crownsville Hospital Center for alleged cerebral palsy, epilepsy, and a "diagnosis of idiocy" (273). When Rebecca Skloot and Deborah Lacks visit the center to find out what became of Elsie, they learn of terrible patient abuse and neglect at the institution, including scientific research without consent, which resulted in permanent brain damage and paralysis for many patients, possibly including Elsie. While the hospital has closed, it too was surrounded by supernatural rumors. Regardless of the truth of these hauntings, the stories of patient abuse and neglect, including that of Elsie Lacks, are even more horrifying to consider.

What do you think of the connection between patient abuse and haunted hospitals? For further information, click here for Dayle Delancey's article, which begins on page three. More information about Elsie Lacks is available in Chapter 33 of The Immortal Life of Henrietta Lacks, titled "The Hospital for the Negro Insane."

Click here for a photograph exibit featuring Crownsville Hospital Center.

Tuesday, April 26, 2011

High School Students Debate on Financial Incentives for Organ Donation

Readers of The Immortal Life of Henrietta Lacks may remember Zakariyya Lacks' opinion about the scientific use of his mother's tissue:
Them doctors say her cells is so important and did all this and that to help people. But it didn't do no good for her, and it don't do no good for us. If me and my sister need something, we can't even go see a doctor cause we can't afford it. Only people that can get any good from my mother cells is the people that got money, and whoever sellin them cells - they get rich off our mother and we got nothing. (pg 246-247, The Immortal Life of Henrietta Lacks).
Had financial incentives been offered for the use of Henrietta's tissue, her family's circumstances may have been entirely different.

National Forensics League public forum debate students spent the month of April considering a topic that heavily relates to what the Lacks family has grappled with for years. The April 2011 Public Forum Debate topic was “Resolved: The United States federal government should permit the use of financial incentives to encourage organ donation.”

As readers of HeLa know, this is a controversial topic, which we have considered at length in our community wide discussion of Rebecca Skloot's book, as well as at our Go Big Read capstone events. What is your stance on this public forum debate topic?

The National Forensics League, based in Ripon, Wisconsin, aims to "promote high school and middle school speech and debate activities as a means to develop a student’s essential life skills and values." Public Forum Debate topics are worded as resolutions in order to advocate solving a problem by taking a position, and students must develop arguments for both sides of the debate. Topics are decided via a nationwide vote of National Forensics League advisers. Click here for more information about NFL Public Forum Debates.

Wednesday, April 20, 2011

A Succesful Capstone event!


The Go Big Read Capstone event last weekend was a great success! Through films, panel discussions, keynotes and more, we were able to continue discussing and learning about HeLa. Participants heard from numerous experts, including UW faculty from a variety of departments, as well as speakers from across the country.


One highlight was the mock Institutional Review Board, giving a chance for audience members to weigh in on their own opinions on informed consent topics. Panelists discussed two topics relating to consent issues in tissue research. This experience not only helped participants understand how an IRB works, but also gave us a chance to learn more about the issues surrounding HeLa and better formulate our own opinions.

We also enjoyed two keynote speeches. On Friday, Ruth Faden, the executive director at Johns Hopkins University Berman Institute of Bioethics, gave a talk titled "Henrietta Lacks: Ethics at the Intersection of Health Care and Biomedical Science." On Saturday, Vanessa Northington Gamble of George Washington University spoke on "Henrietta Lacks Beyond her Cells: Race, Racism and American Medicine." These speeches were two engaging highlights of the weekend.

All in all, the capstone was a great way to begin wrapping up our community-wide discussion of "The Immortal Life of Henrietta Lacks." Thanks to everyone who made it such a success. If you came to one or both days, leave a comment and let us know what you thought!

Tuesday, April 19, 2011

Deborah Blum on "'Celling' the Story: A Science Writer's Perspective on 'The Immortal Life of Henrietta Lacks'"

The Go Big Read Capstone last weekend was a great success, but we're still looking forward to another great discussion about Henrietta Lacks.

We've looked at Rebecca Skloot's book from a variety of perspectives: bioethics, race, informed consent, health literacy, and more. What does a writer have to say? Join Go Big Read tomorrow, April 20th from 4:30-6 pm in Room 460 of Memorial Library, as UW Professor of Journalism Deborah Blum discusses "'Celling' the Story: A Science Writer's Perspective on 'The Immortal Life of Henrietta Lacks.'"


Blum, author of bestseller "The Poisoner's Handbook," among many other books, will share her perspective on the process of the writing and publication process of "The Immortal Life of Henrietta Lacks," as well as trade secrets that made the book such a success.

To learn more about Deborah Blum, visit her website, the tagline of which is "Investigating Science One Story at a Time." We hope you'll join us for this exciting opportunity!

Monday, April 18, 2011

Colloquium: Nicholas Dew, “Weight in the Tropics: French Expeditions and the Globalization of Science

In the final event of the History of Science Department's Colloquium Series, "Appropriations: Collecting for Science," Nicholas Dew of McGill University will discuss "Weight in the Tropics: French Expeditions and the Globalization of Science, .c 1670- c. 1740."

Dew is a professor of early modern European history at McGill University, and his interests lie in the history of of science, travel, and oriental studies. Currently, he is writing a book on the history of the trans-Atlantic dimensions of French science in the from 1670-1760, the topic of his talk here at UW-Madison.

This event will be held at 4:00 pm on April 19th in Memorial Library 984 (Special Collections). For more information, please visit the History of Science Department's website.

Friday, April 15, 2011

Capstone Event Starts TODAY!

Today's the day! We've spent the last year reading and discussing Rebecca Skloot's "The Immortal Life of Henrietta Lacks" on our own and in our classes, book discussions, and libraries. Now it's time to cap it off with two days of discussion, speakers, and films at the Wisconsin Institute for Discovery.

If you've been following our blog the past couple weeks, you've read about some of the great events planned for today and tomorrow at WID. Here's a recap- don't forget to stop by for some or all of these events!

2011 Go Big Read Capstone: "Who owns my body and where is it now?"

Friday April 15th

1-2:30 pm: Panel Discussion, "Who Owns My Body and Why Does it Matter?"

3- 4 pm: Keynote Speaker Ruth Faden: "Henrietta Lacks: Ethics at the Intersection of Health Care and Biomedical Science"

4- 5 pm: Mock IRB

5 pm: Networking Reception

6 pm: Film and Discussion, "Made in India"

Saturday April 16th

10 am:
Welcome

10:30 am - 12 pm:
Panel Discussion, "60 Years Later: Where Are We Now?"

1:30 - 2:30 pm: Keynote Vannessa Northington Gamble, "Henrietta Lacks Beyond Her Cells: Race, Racism, and American Medicine."


3:00 pm:
Film and Discussion, "The Deadly Deception"

Click here for a more detailed agenda!

Thursday, April 14, 2011

"The Deadly Deception" Film at the Capstone

The April 15-16 Capstone event will feature two films: "Made in India" on Friday at 6 pm, and "The Deadly Deception" on Saturday at 3 pm.

The showing of "The Deadly Deception," with a discussion to follow, will be the final event of the capstone. This film is a documentary of the ethics of government sponsored scientific research, especially as it relates to the Tuskegee Syphilis Study. This study, which lasted from 1932-1972, studied the progression of untreated syphilis in 400 African-American men. Participants were not informed of the details of the study, which resulted in death and complications for many, including family members.

This documentary touches on many of the issues which surround the other events at the Go Big Read Capstone this weekend, as well as issues relating to Henrietta Lacks and her famous cells.

All Capstone events are free and open to the public, and hosted by the Wisconsin Institute for Discovery. We hope you'll join us there! Click here to RSVP for either or both days of the event.

Wednesday, April 13, 2011

More Capstone Events: "Where Are We Now?" Panel

You've heard about what's on board for Friday April 15th, but there's also a number of great events planned for Saturday, April 16th at WID.

After learning about a number of topics relevant to HeLa on Friday, from race in medicine to bioethics to ownership issues and more, come to the second panel discussion, "Where are We Now?" 60 years after Henrietta Lacks' cells were taken, we still face many of the same issues today. What has changed, and what hasn't? Learn and discuss with faculty members from UW Law and Medicine departments in a panel discussion moderated by Dr. Susan Lederer, Chair, Department of Medical History and Bioethics. The panel will be held on April 16th from 10:30 am - 12 pm.

Panelists include
Norm Fost, Professor, UW School of Medicine and Public Health, Alta Charo, Professor, UW Law School, and Pilar Ossorio, Professor, UW Law School. We hope you'll join us there!

Tuesday, April 12, 2011

Mock IRB on April 15th

April 15th is a great day to come to the Wisconsin Institute for Discovery and see what the Capstone Event is all about! In addition to a panel discussion, keynote speaker, and evening film, the events for the day also include a mock Institutional Review Board, featuring many experienced faculty and staff members.

The event is free and open to the public; come over to WID from 4-5 pm on April 15th to interact with the panel and discuss and attempt to resolve several ethical dilemmas relating to the use of bodies and body parts within a scientific study. Now's the time to ask and answer any lingering questions you have about HeLa or other related topics, so don't miss it! Come for just the mock IRB or join us for other events, as well.

Panelists include faculty and student members of the UW Law, Medicine, and Nursing schools, among others.

Can't make it on the 15th? Don't worry, there are many events on Saturday the 16th, as well. Click here to RSVP for either or both days of the Go Big Read Capstone event.

Monday, April 11, 2011

Capstone Panel: Who Owns my Body and Why Does it Matter?

The Go Big Read Capstone event is nearly here! Keep checking back here at our blog all week for features of speakers, panels, films, and more as we gear up for the events this weekend at the Wisconsin Institute for Discovery.

On April 15th from 1-2:30, stop by for a panel discussion on the human body as property, including issues of consent, identification, regulatory issues, and ownership.

The panel discussion, "Who owns my body and why does it matter?" will be moderated by Ruth Faden, the executive director of the Johns Hopkins University Berman Institute of Bioethics.

Panelists include a variety of experts in related fields, including some from right here at UW Madison. We look forward to hearing from Shubha Ghosh, professor at UW Law School, who has co-authored two casebooks on intellectual property, among numerous other achievements. He is currently working on a project called "Identity and Invention: Patent Activity in the Area of Personalized Medicine."

Dayle B. DeLancey, another panelist, is an assistant professor in the UW School of Medicine and Public Health's Department of Medical History & Bioethics. DeLancey's research includes race and gender in medicine, the public understanding of medicine, and U.S. public health.

Other UW panelists include Mary Nachreiner of UW Health Organ Procurement Services, and Dr. Timothy Kamp, a Professor of Medicine and the director of the Wisconsin Stem Cell and Regenerative Medicine Center at the UW School of Medicine and Public Health. We also look forward to hearing from Martha Anderson, executive vice president of Donor Servicees at the Musculoskeletal Transplant Foundation.

These many experts will certainly have much to add to our community wide discussion of HeLa and Henrietta Lacks. Ruth Faden, the panel moderator, will also be Friday's keynote speaker. For more information about her talk, "Henrietta Lacks: Ethics at the Intersection of Health Care and Biomedical Science," click here for a previous post.

We hope you'll join Go Big Read for some or all of these exciting capstone experiences. Please click here to RSVP for the events, all of which are free and open to the public.

Friday, April 8, 2011

Made in India: Showing at the Capstone Event

If you missed Made in India at the Wisconsin Film Festival last weekend, you'll have another chance to see it at the Go Big Read Capstone event. Made in India is a documentary about an American couple who hires an Indian woman to carry their own fertilized embryo to term. It explores a variety of issues, including human rights, commodification of the body, and the practices of global corporations.

The film will show on April 15th, at 6 pm at the Wisconsin Institute for Discovery, and will be followed by a discussion moderated by Mary F. Murphey, Program Director at The Surrogacy Center LLC. Click here to RSVP for this and other capstone events, all of which are free and open to the public..

Wednesday, April 6, 2011

Waclaw Szybalski: "Working with HeLa cells since 1954"

While many members of the public became aware of Henrietta Lacks and her famous immortal cells after reading Rebecca Skloot's book, others have been working directly with the cells for many years. Waclaw Szybalski, Professor Emeritus of Oncology at UW Madison, has worked with HeLa cells since 1954, not long after George Gey began to develop Henrietta's cell line in 1951.

Dr. Szybalski used HeLa cells as controls when he studied gene therapy with the Detroit 98 human bone marrow cell line, starting in 1954. He contributed greatly to genetic research with the development of the HAT selection method, enabling him to isolate human cell mutants and demonstrate the first genetic transformation of human cells. As a result, he discovered and coined the term human gene therapy,a process which removes or alters genes within cells or tissue in order to treat disease, in 1962. Next year will be the 50 year anniversary of this milestone. Dr. Szybalski's works and acheivements are too numerous to mention in full. Click here for a list of his publications, areas of study, and awards.

To hear more about how HeLa cells relate to science, medicine, race, and ethics, RSVP to attend the Go Big Read capstone events on April 15th and 16th at the Wisconsin Institute for Discovery, or click here for an agenda of speakers, panelists, films, and more.

Monday, April 4, 2011

Vanessa Northington Gamble at the Capstone Event: "Henrietta Lacks Beyond Her Cells: Race, Racism, and American Medicine"

Last week the Go Big Read blog featured Ruth Faden, keynote speaker on April 15th for the Capstone Event. This week, we're excited to share some info about the capstone's second keynote speaker! On April 16th, keynote Vanessa Northington Gamble will speak on "Henrietta Lacks Beyond Her Cells: Race, Racism, and American Medicine."

Gamble is a physician and medical historian located at George Washington University, where she is a professor of medical humanities and history. From 1989 until 2000, she was a faculty member at the University of Wisconsin. Among other accomplishments here in Madison, including becoming the founder and director of the Center for the Study of Race and Ethnicity at the University of Wisconsin Medical School, she developed the nation's first class on the history of race, American medicine, and public health.

Much of Gamble's work and experience focuses on these fields. For example, in the late 1990s, Gamble was the chair of the Tuskegee Syphilis Study Legacy Committee. The Tuskegee Syphilis Study, which lasted forty years, began in 1932, and resulted in medical complications or death for hundreds of African Americans. Thanks to the work of the Legacy Committee, President Clinton issued an apology on behalf of the United States government.

Readers of The Immortal Life of Henrietta Lacks might remember Skloot's discussion of the Tuskegee Syphilis Study. In explaining it, she says, "The research subjects didn't ask questions. They were poor and uneducated..." (pg 50). This study, and the story of HeLa, share numerous similarities relating to race, ethics, and medicine. We look forward to hearing Gamble's discussion of these topics on April 16th.

Click here to RSVP
for the events on April 15th and 16th at the Wisconsin Institute for Discovery, which are free and open to the public.