As you plan your next two weeks on the west side of campus, please keep in mind that the popular “Informing Consent: Unwitting Subjects in Medicine’s Pursuit of Beneficial Knowledge,” closes on March 31st. Numerous classes, community members, students, faculty and staff have learned from seeing many of the themes in Skloot’s book “brought to life,” through photographs, newspaper clippings, magazines and medical journals.
A Display Case on the history of research at UW-Madison, informed consent, and the McCardle Laboratory for Cancer Research.
Recently a group of students visited the “Informing Consent: Unwitting Subjects in Medicine’s Pursuit of Beneficial Knowledge” exhibit at the Ebling Library for the Health Sciences. Noticing that the students were bent over the display cases, discussing artifacts and items with one another, and taking notes, I asked them if they were there for a class- as generally, twenty students, all in one place, for over an hour, when it is not a social event- is noteworthy.
They were here from Edgewood College, from their class, BIO 402- Cell and Molecular Biology. The students, taught by Fern Murdoch,PhD., had read “The Immortal Life of Henrietta Lacks” at the beginning of the semester and had written a paper about one of the scientific uses of HeLa cells. They were finishing the semester with a paper on the ethics of human tissue use. They found the exhibit to be a great jumping off point for their discussions. Their discussion centered on who owns human cells? Is the good provided by medical research more important that an individual’s claim on their own tissue? A number of students were particularly interested in the development of skin cultures in the Allen-Hoffman lab (which there is a case on in the exhibit) and where those cells came from. Another student brought up the issue of the rights, or lack of rights, of prison inmates to consent to participate in research studies. As Professor Murdoch wrote, “Overall, I think the exhibit contributed significantly to the students’ thinking about the ethics using human tissues in medical research.”
The exhibit continues until the end of March, 2011. If you or your class (or book club) would like a tour of the exhibit, or would like to come on your own time, we invite you to attend! Contact Micaela for more information: firstname.lastname@example.org
A Washington Post article* from this past week discusses China as an emerging leader in scientific research and development. Just a decade ago, Chinese scientists were fleeing to the West because of an oppressive government. With lots of funding and more flexibility, they are now returning and advancements in scientific research have taken off in the past five years. John Pomfret, the writer, describes the growth like this: “Unburdened by social and legal constraints common in the West, China’s trailblazing scientists are also pushing the limits of ethics and principle as they create a new—and to many, worrisome—Wild West in the Far East.” The label is appropriate since many Chinese researchers are returning to their homeland because of the opportunity to study what they want. Lou Minmin, a neurobiologist, explains that “if I had stayed in America, the chances of making discover [about genes involved in ADD] would have been lower. Here, people are willing to take risks. They give you money, and essentially you can do whatever you want.”
The draw to China might have something to do with the research culture of “doing” something and not just publishing. According to S. Ming Sung, who is the chief representative for the Clean Air Task Force for the Asia-Pacific explains “the action is here [in China]. In the U.S., there are too many paper researchers. Here, they are doing things.” “Doing things” means lots and lots of research, like producing the second-fastest supercomputer and also developing “a new test for cervical cancer that costs less than $5” after “partnering with a firm in the US.” Not to mention that “in 2007, Chinese geneticists discovered vast differences in the genetic makeup of Africans, Asians and Caucasians. They will soon report a breakthrough showing why some people—such as Tibetans—can life effortlessly at high altitudes while others can’t.”
Despite these big steps forward, China is still struggling in areas of innovation, patient safety and honesty: “China is the leading source of what are known as “junk” parents—ridiculous claims of “inventions that are little more than snake-oil scams.” On top of that, “more than 200 institutions in China practice controversial stem cell therapies for people suffering from injuries, diseases or birth defects. Although the government moved last year to regulate the industry, none of the techniques has been subjected to rigorous clinical trials.” Even if the results get out and seem ground-breaking, most other researchers have to go check the facts because “plagiarism and doctored results seem to be as common as chopsticks” in this research boom.
However these drawbacks are not stopping these companies from going full steam ahead. BGI (Beijing Genomics Institute) is “one of the world’s leading genomics institutes devoted to deciphering the genetic blueprint of organisms.” With this mission in mind, BGI purchased “128 ultra-high-tech machines from California-based Illumina” and “could very well surpass the entire gene-sequencing output of the United States.” Then there is 17 year old researcher Zhao Bowen who was on “a team that cracked the genetic code of the cucumber” last year when he was intern. This year, after becoming a full-time employee, he is “probing the genetic basis for human IQ” which most Western researchers avoid because of ethical concerns. According to the Post, “Zhao plans to study the genes of 1,000 of his best-performing classmates at a top high school in Beijing and compare them, he said, ‘with 1,000 normal kids.’”
Freedom is an important part of success in research in China. BGI used to reside in Beijing (hence the name) but moved south to Shenzhen City when “Ministry of Science and Technology tried to dictate what it could and could not study.” As an incentive, “the Shenzhen city government offered [BGI] millions of dollars in grants and operating expenses to move south.” Presumably they did not plan on trying to control the institute’s operations either. The founder of BGI, Huanming explains that “we came here because it was the best place for us to pursue science. We’re not interested in politics.” In addition, the most successful institute in China, the National Institute for Biological Sciences (NIBS), is “the only major research institution in China that does not have a Communist Party secretary.” Political apathy seems to be a large part of the formula for success for these new research organizations. Afterall, dozens of these companies are starting up and forging ahead, helped by substantial funding, usually from more than one source, and lack of interfere. While these things can cause problems when it comes to safety, honesty and ethics, it is giving China’s research field a chance to grow.
*Note: only a section of the article may be available for viewing without subscribing (though it is free).
According to Popular Science, Feb. 1, 2010, 276(2), p. 81. This is the sort of summary that the public is reading on “The Immortal Life of Henrietta Lacks.” Each item has a number of talking points in terms of HeLa cells and their role in scientific research. And as readers of the book know, the people involved in the research, and the Lacks family play as important a role in the trajectory of the story as the cells themselves.
If on campus, this takes you to the FindIt where you can get the half page of full text.
On Wednesday, June 2nd, Kathleen Dunn will be interviewing Rebecca Skloot, author of “The Immortal Life of Henrietta Lacks.” Skloot was also interviewed earlier this year, on Michael Feldman’s Whad’Ya Know? (March 13, 2010). Skloot and Dunn will be on a little after 10:00 am. Listen in on what promises to be a lively conversation…
On Wednesday, May 19th, “Law and Order” had an episode called “Immortal,” that had a storyline about “stolen” immortal cells, an African-American family, a medical research firm and the question of remuneration for cells taken and not paid for …
Here is the basic script.
Its portrayal of the main themes speaks to the compelling nature of the subject of Skloot’s “The Immortal Life of Henrietta Lacks” and affirms the fact that there are numerous bioethical and social concerns inherent in the book. A reading of the book and viewing of the episode will surely provoke numerous lines of discussion from students, staff and faculty.