University Scientist Uses Hela Cells in HIV Research

University Scientist Uses HeLa Cells in HIV Research Sha Jin develops method to detect, help treat disease Tuesday, October 12, 2010

Sha Jin, assistant professor of biomedical engineering FAYETTEVILLE, Ark. – Sha Jin, assistant professor of biomedical engineering at the University of Arkansas, will present a lecture, “The Value of HeLa Cells for Biomedical Research,” at 7 p.m. Thursday, Oct. 14 in the Arkansas Union Theatre. The lecture is free and open to the public. Jin uses HeLa cells in her lab at the university’s Engineering Research Center to develop a molecular “probe” that can detect an enzyme produced when cells are infected with HIV, the virus that causes AIDS, and also can determine the toxicity levels of drugs used to treat HIV. HeLa cells are ideal for Sha Jin’s research for several reasons: they grow rapidly; can be handled in a straightforward manner; grow in large quantity; and are less costly to grow than many other cell cultures. In addition, targeted genes can be easily delivered to HeLa cells. HeLa cells are derived from cervical cancer cells that were taken from Henrietta Lacks, who died from her disease in 1951. Her story, the medical breakthroughs made possible by researchers using HeLa cells, and the issues raised by their use are the subject of The Immortal Life of Henrietta Lacks, by Rebecca Skloot. The book is being read this year in the university’s One Book, One Community project. Sha Jin’s lecture is part of the communitywide discussion of the book this fall. An eight-minute film about Sha Jin’s research, HeLa: Probing for a Cure, will be shown as part of her lecture. The film was produced by university relations. Robert Haslam, director of the Quality Writing Center at the University of Arkansas will introduce both Sha Jin and the film. Keywords: Arts & Humanities Diversity & Multiculturalism Entertainment & Cultural Events Events Lectures Research & Innovation Science

Studying a Relic of a Painful Past Advocates Seek to Save History At Md. Mental Hospital for Blacks By Daniel de Vise Washington Post Staff Writer Friday, August 12, 2005 Doris Morgenstern Wachsler grew up among the people society called lunatics, idiots and maniacs. Within the walls of Crownsville State Hospital, their howling and sobbing went on without cease. Wachsler was the daughter of Jacob Morgenstern, the Austrian immigrant who, in the years after World War II, occupied the superintendent's mansion overlooking the red-brick fortress once known as the Hospital for the Negro Insane in central Anne Arundel County. "It was scary for me when I was a little girl," Wachsler recalled. "Both of my parents worked at the hospital. I would go home to the hospital." Crownsville State Hospital sits empty now, shuttered since July 2004. The rusting window grates that once held patients in keep trespassers out. As sordid as life was at the hospital, particularly for blacks, there is interest in retaining those lonely buildings and preserving the ornate murals, painted by Crownsville patients as art therapy, that still cover many walls and window panes. A small group of former Crownsville employees, black leaders and historians is quietly monitoring deliberations over the empty facility, hoping this emblem of African American toil, artistry and suffering will not fall to the wrecking ball. To those who see Crownsville as hallowed ground, the arrival of a film crew this summer to shoot a horror movie called "Crazy Eights" and featuring former porn star Traci Lords was not an encouraging sign. "The land was purchased for African American people. They built the buildings. They raised the food," said George Phelps Jr., an elder statesman in the Annapolis black community who spent years monitoring conditions at Crownsville. "Now it seems like they should have some say in the usage of the property today." The story of the defunct hospital spans generations of evolving race relations in Maryland. A glimpse inside hospital archives affords a grim view of the sort of treatment a black mental patient could expect in the days before integrated health care. From wartime till the 1950s, Crownsville was the most crowded, understaffed mental hospital in Maryland. Children sometimes slept two to a bed, or on mattresses on the floor. Photographs from the era show patients sprawled on the concrete floor for lack of chairs. People disappeared into Crownsville's back wards, sometimes for decades. "You were more likely to leave Crownsville through death than discharge," said Paul Lurz, an employee at Crownsville from 1964 to the end and now its unofficial historian. Alone among Maryland's mental hospitals, Crownsville housed the criminally insane, the mentally ill and retarded, adults and children along with drunks and people with syphilis and tuberculosis, all on one campus. Adults and children dwelled in the same wards. Doctors tested drugs on patients without consent, according to Lurz and other Crownsville scholars. For decades, Crownsville's dead were buried in numbered graves. The book that matched the numbers to names is long gone. In later years, hundreds of cadavers were sent off to Baltimore for medical research, usually without the consent of relatives, said Janice Hayes-Williams, an Annapolis historian who has researched Crownsville death records. Patients were sent to work on neighboring farms for "pittance" wages, Lurz said, as a means of exploitation. The shutdown of the hospital's own farm operations in the 1960s prompted a large- scale release of patients, suggesting that many had been kept for their value as laborers. The Washington Post and various other newspapers published reports in the 1940s and 1950s exposing the dire conditions at Crownsville and the other state hospitals. "Epileptics, hopelessly senile patients, low-grade idiots and psychotics were packed in two gloomy 'day rooms' during a tour Monday," wrote reporter Laurence Stern in a 1958 Post story. "In one windowless basement room, 40 'working' patients live under a tangle of hot water pipes." Rumors persist of even darker secrets at Crownsville. Some black leaders, including Phelps, remain convinced that doctors subjected live patients to gruesome medical experiments akin to those practiced in Nazi concentration camps. Phelps said he heard such accounts decades ago while touring the facility. "During this time, we were not considered as human, I guess," Phelps said. "They could do what they liked." Other authorities on Crownsville said there is no evidence to support such claims. "If it was done, I mean, it's all in the shredder, and it's been there for years, because I can't find anything," Lurz said. Crownsville was created in 1910 with the purchase of 566 acres of farmland for $19,000 by the state, part of a movement to reform the treatment of mental patients. To save money, the state used patient labor to build much of the campus. From the start, Crownsville served as a dumping ground, "a place of last resort for black people with any kind of problem that affected your behavior," Lurz said. Conditions at Crownsville began to deteriorate in the 1930s, said Robert Schoeberlein, a state archivist. The war effort sapped the hospital's staff. By 1949, the year of an influential report in the Baltimore Sun, there were 1,800 patients at a Crownsville campus designed for 1,100, and one doctor for every 225 patients. Public debate over Crownsville often focused not on the welfare of the patients but on the safety of the surrounding community. Dozens of patients escaped the hospital every year, including criminally insane men from the dreaded C Building. Civil rights groups had sought to integrate the all-white Crownsville staff for years, but hospital administrators long opposed it. In a 1943 interview, G.H. Preston, then Maryland's commissioner of mental hygiene, told a black journalist that integration would work only if "you people demonstrate it can be done." Jacob Morgenstern brought the first black employees to Crownsville in 1948. By 1956, one-third of the staff was black. Crownsville fully integrated in 1962. By the time the facility closed, Crownsville's legacy was largely forgotten. Hayes-Williams and Phelps, her uncle, have finished the work of identifying whom they could among the 1,800 people buried there. She has not yet had time to computerize or publish the data, which could ultimately lead hundreds of families to lost relatives. Their labors inspired a state law that prevents the state from selling the graveyard. The fate of the hospital and its 1,200-acre campus, a prize parcel to developers, remains in play. Proposals run the gamut from an equestrian park to a shopping mall to a clutch of million-dollar homes. State and county officials said they are studying the potential costs of repairing and renovating the buildings instead of tearing them down. Crownsville advocates said they will be watching. "I would hate to see everything just leveled and McMansions placed there," said Schoeberlein, the state archivist. "It sounds schmaltzy, but it really is hallowed ground." © 2005 The Washington Post Company

Ethics in Research Copyright ©2006, William M.K. Trochim, All Rights Reserved Purchase a printed copy of the Research Methods Knowledge Base Last Revised: 10/20/2006 We are going through a time of profound change in our understanding of the ethics of applied social research. From the time immediately after World War II until the early 1990s, there was a gradually developing consensus about the key ethical principles that should underlie the research endeavor. Two marker events stand out (among many others) as symbolic of this consensus. The Nuremberg War Crimes Trial following World War II brought to public view the ways German scientists had used captive human subjects as subjects in oftentimes gruesome experiments. In the 1950s and 1960s, the Tuskegee Syphilis Study involved the withholding of known effective treatment for syphilis from African-American participants who were infected. Events like these forced the reexamination of ethical standards and the gradual development of a consensus that potential human subjects needed to be protected from being used as 'guinea pigs' in scientific research. By the 1990s, the dynamics of the situation changed. Cancer patients and persons with AIDS fought publicly with the medical research establishment about the long time needed to get approval for and complete research into potential cures for fatal diseases. In many cases, it is the ethical assumptions of the previous thirty years that drive this 'go-slow' mentality. After all, we would rather risk denying treatment for a while until we achieve enough confidence in a treatment, rather than run the risk of harming innocent people (as in the Nuremberg and Tuskegee events). But now, those who were threatened with fatal illness were saying to the research establishment that they wanted to be test subjects, even under experimental conditions of considerable risk. You had several very vocal and articulate patient groups who wanted to be experimented on coming up against an ethical review system that was designed to protect them from being experimented on. Although the last few years in the ethics of research have been tumultuous ones, it is beginning to appear that a new consensus is evolving that involves the stakeholder groups most affected by a problem participating more actively in the formulation of guidelines for research. While it's not entirely clear, at present, what the new consensus will be, it is almost certain that it will not fall at either extreme: protecting against human experimentation at all costs vs. allowing anyone who is willing to be experimented on. Ethical Issues There are a number of key phrases that describe the system of ethical protections that the contemporary social and medical research establishment have created to try to protect better the rights of their research participants. The principle of voluntary participation requires that people not be coerced into participating in research. This is especially relevant where researchers had previously relied on 'captive audiences' for their subjects -- prisons, universities, and places like that. Closely related to the notion of voluntary participation is the requirement of informed consent. Essentially, this means that prospective research participants must be fully informed about the procedures and risks involved in research and must give their consent to participate. Ethical standards also require that researchers not put participants in a situation where they might be at risk of harm as a result of their participation. Harm can be defined as both physical and psychological. There are two standards that are applied in order to help protect the privacy of research participants. Almost all research guarantees the participants confidentiality -- they are assured that identifying information will not be made available to anyone who is not directly involved in the study. The stricter standard is the principle of anonymitywhich essentially means that the participant will remain anonymous throughout the study --even to the researchers themselves. Clearly, the anonymity standard is a stronger guarantee of privacy, but it is sometimes difficult to accomplish, especially in situations where participants have to be measured at multiple time points (e.g., a pre-post study). Increasingly, researchers have had to deal with the ethical issue of a person's right to service. Good research practice often requires the use of a no-treatment control group -- a group of participants who do not get the treatment or program that is being studied. But when that treatment or program may have beneficial effects, persons assigned to the no-treatment control may feel their rights to equal access to services are being curtailed. Even when clear ethical standards and principles exist, there will be times when the need to do accurate research runs up against the rights of potential participants. No set of standards can possibly anticipate every ethical circumstance. Furthermore, there needs to be a procedure that assures that researchers will consider all relevant ethical issues in formulating research plans. To address such needs most institutions and organizations have formulated an Institutional Review Board (IRB), a panel of persons who reviews grant proposals with respect to ethical implications and decides whether additional actions need to be taken to assure the safety and rights of participants. By reviewing proposals for research, IRBs also help to protect both the organization and the researcher against potential legal implications of neglecting to address important ethical issues of participants. White Coat Underground More on Lacks ethics

Posted by PalMD on February 3, 2010 (10) I’m heartened by the discussions of medical ethics arising out of The Immortal Life of Henrietta Lacks. From reading and listening to interviews with writer Rebecca Skloot, and from my brief conversations with her, I know that medical ethics were very much on her mind during the ten years it took her to create the book. If you read the book, you will see that she was also very concerned that she not be just another exploiter of the Lacks family. That’s one reason comments such as this one are disturbing—-and at the same time not really disturbing at all. It helps to highlight the amount of distrust the scientific community has managed to bank. (As a reminder, Henrietta Lacks was an African American woman who died of cervical cancer in the 1950s and whose cancer cells, taken without her explicit consent, became one of the most important tools of modern biology.) We’ve all benefited from research made possible by Henrietta Lacks and countless others whose names have been forgotten. The amount of distrust we’ve banked with the public over the years is considerable, and will take a long time to mitigate. But there are many reasons to try to improve our trust balance sheet, not the least of which is our own self-interest. But let’s back up a bit and get a little deeper into how we understand medical ethics. Ethics are a way of understanding our behavior toward each other. It’s not a set of rules which one can simply check off and get an “I’m Ethical!” sticker. And ethics change as our values as a society change. Like many things in society, what is considered ethical is often a matter of perspective, with wealth and privilege often creating a certain set of assumptions (or creating blinders), but one of the goals of ethics is to create ways of relating to each other that take into account “the other”. Ethics that are determined by or benefit only one group are not very useful. Henrietta Lacks was treated at a time when medical ethics were quite different. Certain values were already important, including patient confidentiality, but were understood much differently then now, and applied differently to different groups. Our modern understanding of the balance between patient autonomy and medical paternalism has shifted considerably. Not many decades ago, it was assumed that the doctor knew what was best for the patient, and the patient not only did not participate in decision making but was often not given significant information about their condition. In practice this is a very difficult balance to strike. No patient can have the same perspective as the physician (and vice versa). The most medically knowledgeable patient, thrown into the sick role, may have somewhat impaired judgement. People come to physicians because we are experts and they want our opinion (at least under the best of circumstances). While we shouldn’t make decisions for our patients, we must judge how much guidance they want and how much they need, and help them make decisions that benefit them. This should be done ideally with the thought of the patient’s autonomy explicit in the thinking of the doctor. In the case of Henrietta Lacks, her autonomy was violated, at least by modern definitions. She had little choice as to where she sought care (because of both economics and racism), and her care was delivered with little input from her. She was not well-educated, and communicating to her the details of her care would have taken a lot of work—work which would have benefited her. The cancer cells which went on to become the HeLa cell culture were not simply a by- product of her treatment. They were not leftover from surgery meant to help her. They were specimens taken explicitly (to the doctors) for research, and this should have been communicated to her. She should have been given the option of declining the procedure. (See here for a discussion of the consent given by Mrs. Lacks.) When helping guide people through important health decisions we must keep in mind our goals. Explicit in modern medical ethics are the goals of beneficence and non-maleficence, that is, helping the patient and trying not to harm them. These goals, and that of autonomy, are often in conflict. In attempting to help a patient heal and prevent their death, we may recommend a certain behavior, for example, a pill. Even when the patient clearly understands the risks and benefits of the medication, they may still decline it, and because we value patient autonomy, we accept this. We usually accept it even though we perceive it as interfering with beneficence. But the principle of autonomy may demand that we allow patients to determine for themselves what they consider helpful, and no matter how crazy it may seem to doctors, a patient may decline a treatment we consider necessary. Unless we choose to injure their autonomy. In the case of Henrietta Lacks, the doctors undoubtedly felt they were acting to help her, and the researches felt they were acting to help humankind. But Lacks and her family did not feel the same way. The ways in which the doctors and society as a whole dealt with Henrietta and the rest of the Lacks family failed to advance their dignity, and failed to provide them with justice, two more modern medical ethics. Those who argue that this is all moot would be wise to keep their own self-interest in mind. Jeremy Singer-Vine discusses this at Slate.com, concluding: Consent ultimately speeds us toward discovery and cures by boosting scientific trust within the communities that those researchers not only serve but also depend upon. The fact that Lacks died a horrible death may or may not have been mitigated by more ethical behavior. But the suffering of her family certainly would have. This is where ethics can also get a bit difficult. Understanding autonomy, beneficence, etc. requires attempting to understand another person’s perspective. This is very, very difficult for many. A comment from Ed Yong’s blog brings up one of these problems (and is typical from what I’ve seen on the web): Paying people for blood/tissue donations is a bad precedent to set, most people are happy with the knowledge that they’ve helped medical research. And lets not forget that had she refused permission for her cells to be used then research would have been delayed but someone elses cells would have been cultured and we wouldn’t be having this conversation. (Emphasis mine, PAL) What “most people” would be happy with is an interesting assumption, one which may or may not be true, but what is important in medicine is not just what “most people” want, but what the person sitting in front of you wants. While society’s needs may have been served by Mrs. Lacks, they were not served in a way that preserved her dignity and autonomy. Not only is a utilitarian argument ethically unpleasant, it’s invalid, as the cells and subsequent discoveries did not depend on abusing Mrs. Lacks. Henrietta Lacks has served society long after her death through the involuntary donation of her cancer cells. With the publication of her story, she has added a new dimension of service, one in which we can elevate our discussion of medical ethics.