Cells taken from a young African American woman in 1951 helped scientists cure polio. Cells from the same woman contributed to scientific advances in cancer, gene mapping, and even the atom bomb. The mother of five didn't live to know her cells had such importance. She never knew, in fact, that they were being harvested.
The patient's story, told in Rebecca Skloot's The Immortal Life of Henrietta Lacks, goes beyond the science of the discoveries to tell a personal story of betrayal and misrepresentation based on economic, social, and educational disparities related to race. Today's medical advances are based on practices that people would now consider unethical: Henrietta Lacks did not know the cells taken from her could possibly be used to develop a multimillion-dollar medical industry. In an even crueler twist of fate, her descendants lived in poverty without access to affordable health care.
The book is being read and discussed by thousands of Purdue students this year in the University's Common Reading Program. Some professors also took the opportunity to use the book in classes. It was a perfect fit for Michele Buzon, associate professor of anthropology, who teaches "Human Variation," a class in which juniors and seniors study human cultural and biological variation. Racial issues are a strong component of the class, so the book was a rich source of discussion material.
"Eugenics and forced sterilization are just a couple of controversial topics that many students have not heard about before college. I hadn't either until I went to college, and I think it is very important that we learn and discuss some of the negative components of United States history," Buzon says. "Even though we've made a lot of advances, there are still some prejudices. In this class, whatever the topic may be, I hear so many students say, 'I never thought about it that way before.'"
Life Lessons Learned
Last summer, when incoming Purdue students visited campus to register for classes, each received a copy of The Immortal Life of Henrietta Lacks. They were expected to read the book before school started so that it could be discussed during orientation, when they were able to attend a forum where the author spoke about her experiences writing the book. The Common Reading Program's goal is to provide incoming students with a common educational experience: the book that is selected is intended to provide a variety of discussion topics. In the case of The Immortal Life of Henrietta Lacks, the book offered students from across majors an introduction to the balance between science and ethics.
Buzon read the book when it was announced as the Common Reading selection, and then assigned it to her class, which is composed mostly of anthropology students. The story of Lacks and her family illustrates how pervasive racism was in the 1950s and the obstacles it provided to basic health care — from treatments to segregated wards, and from health care access to higher mortality rates. Some of the ethical parameters such as patient consent for tissue collection and research continue to be relevant today.
Duty to Rescue
A man or a woman walks by a shallow pond and sees a child struggling to swim. Without hesitation, most adults would jump in to save the child. In fact, morally, they should do so.
This philosophical concept is called the "duty to rescue." In simple terms, it is the principle that people ought to help others in critical need when they can do so at no significant cost to themselves, explains incoming Purdue philosophy professor Tina Rulli.
But what is the person's response if the water is more treacherous? The application of the duty to rescue can also become more complex if the scenario changes to portray a starving child featured on a television nightly news segment: a person lounges in a recliner while footage of hungry children flashes on the television. Without hesitation, the adult will …What is the ethical response now?
Rulli, who specializes in ethics and moral philosophy — the study of right and wrong — has applied the duty to rescue concept in her research on adoption. She argues that people have an obligation to adopt existing needy children rather than create new ones. Rulli is currently looking at the limits of the duty to rescue of medical doctors who work in developing countries through programs such as Doctors Without Borders. She is undertaking this research while on a two-year postdoctoral fellowship at the Bioethics Department at the National Institutes of Health and will begin her Purdue faculty position in 2013.
"Making sure a child has a lifesaving vaccine could be ananalogous case to the pond story," Rulli says. "In developing nations, emergency crises abound. There is always one more patient you can treat or one more critical function to complete. When and where is the limit for these doctors' duty to rescue?"
A better understanding could someday help shape guidelines or best practices for the doctors dedicated to this outreach.
On a daily basis, Rulli serves as a consultant on a variety of ethical questions at the world's largest research hospital at the National Institutes of Health. She works with other fellows who represent fields of science, public health, and law to answer questions and develop publications related to patient care and treatment.
"Doctors, lawyers, and others are indispensable resources for their empirical knowledge," she says. "Philosophers are not taking empirical facts for granted, but our job is to ask evaluative questions. While science can exhaustively search the observable world, moral values are not observable. Ethics is the study of these features of our world."
Atrocities Inspire Ethical Codes
Asking ethical questions specific to humans and health is nothing new, but the discipline of bioethics has taken shape since World War II. It emerged after the revelations of the experiments that Nazi doctors were conducting on Jews and other concentration camp prisoners without their consent. Details of the atrocities that emerged during the Nuremberg Trials were shaped into the Nuremberg Code, which was meant to provide ethical guidelines for medical research.
Now, with 21st century medical technology, the bioethics field is burgeoning, says Tina Rulli, an incoming Purdue philosophy professor specializing in ethics who is currently on a fellowship at the Department of Bioethics at the National Institutes of Health.
"Though bioethics is not at all in conflict with science, and it in fact leverages knowledge gained from science — such as knowledge of how societies function, how people make moral judgments — it is an area of investigation beyond the reach of scientific tools and observation," Rullisays. "Scientists should care about ethics because they will face value questions in the design, conduct, and application of their work. Ethicists should care about science because we want our theories to be grounded in solid knowledge about human nature and the world."
Ethics Are Always Evolving
Ethics in research goes beyond health and medicine. Ethics, from issues of plagiarism in literature to proper use of materials in design, is applicable to all areas of social science, humanities, and art. Related controversies may influence how research is conducted, professionals are licensed, and scholarship is published.
Archaeology has its own tarnished past including Colonial English archaeologists working in Egypt with practices that are considered unacceptable today.
"In my 'Archaeology of Ancient Egypt' course," Buzon says, "I start with the 18th and 19th century 'Egyptomania' that came from Europeans stealing artifacts. Collectors would just go into Egypt and take them, and there was no idea that anyone should ask any locals whether they could just take them."
"Because of this negative history, we still encounter that perception to some extent," says Buzon, a bioarchaeologist who works in North Africa, not too far from where British archaeologist Howard Carter discovered King Tutankhamen's tomb.
Today's archaeologists invest time to secure acceptance and support from the local communities regarding excavations, as well as the way in which any revealed human remains or artifacts are handled.
At Buzon's dig sites in the Sudan, she has found human remains that date to 1500 B.C. The locals, who are mostly Muslim, don't express a cultural connection with this past civilization because its people were of ancient Nubian or Egyptian religions. Buzon works with local contacts to consult on the handling or storage of discovered human remains or artifacts, but a recurring issue for archaeologists worldwide is that many countries do not have secure locations or museums to house discoveries.
Whether gaining consent from a local population to explore its physical history or obtaining consent for shared research from underprivileged and privileged medical patients alike, scientists must today consider their pursuits in the light of ethics.
|Jonathan Beever, a philosophy doctoral student, collaborated with a former graduate student to create Purdue's Lectures on Ethics, Policy and Science. Beever says more scientists are seeking the expertise of philosophers on ethical issues, and the series is an opportunity to connect across disciplines.|
Beyond the Laboratory
Just as technology for telecommunications, medicine, and engineering advances with time, so do the rules, guidelines, and codes that scientists rely on when pondering how a discovery or invention could improve or be detrimental to quality of life.
"There have always been social concerns for scientists," says Jonathan Beever, a philosophy doctoral student. "At first, professional codes of ethics were believed by scientists to be sufficient to maintain responsible and ethical research practice. But policymakers and funding organizations realized that wasn't always the case, so they developed responsible conduct of research programs. Now there is a third component — scientists need to think of ethical ramifications.
"A lot of ethical theorizing has been done as reactive to technological development, so we thought we could do something more proactive for the University and philosophy.
"The "we" is Beever, who focuses on environmental ethics, along with his former graduate student colleague, Nicolae Morar, who specializes in ethics of biotechnologies and human enhancement as a University of Oregon faculty fellow. In 2006, they invested their enthusiasm and expertise to launch Purdue's Lecture Series on Ethics, Policy, and Science.
After six years of hard work and the support of faculty advisor Mark Bernstein, the Joyce and Edward E. Brewer Chair in Applied Ethics at Purdue, some of the nation's best-known experts have visited Purdue, lecturing on a diverse range of topics including ethics in public health, climate change, synthetic biology, nanotechnology, and animal issues.
"More scientists are turning to us for guidance in ethics," Beever says. Both he and Morar have been sought out by professors in education and biomedical engineering to teach or consult on such issues. "I see this project as supplementing what exists for ethical conduct in research."
There also is a possible business component to the lecture series. Beever is supported this year by a commercialization award from Purdue's Burton D. Morgan Center for Entrepreneurship. Beever is tasked with developing a model for ethics education that he envisions will become a hub for anyone interested in ethics. The majority of the series' presentations are audio and video recorded, and they are available online for instructors to use in class, and scholars and students to use inresearch.
Beever, who will receive his doctorate in May 2013, is training two graduate students from philosophy and political science with funding from Purdue's Global Policy Research Institute and the Office of the Provost to ensure that the series continues.
"How we use technology to affect the environment ultimately affects human well-being," he says. "For example, I think synthetic biology is a very interesting topic. What are the ethical and social ramifications if we find out that we have the ability to create — technologically — life? And what is life? Topics like this force us to consider a full range of social, political, and ethical implications to scientific innovation."
Great publication. Great articles—although I feel/think that the article on Henrietta Lacks was very incomplete and done without any research into the legal, medical or moral consequences. Relevance gets a 10+. Writing gets a 9+.