bioethics

Bioethics and the Limits of Experimentation

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Since coming back to Wesleyan in 2007, I’ve had the pleasure of getting to know Joseph Fins ’82, who was on the Board of Trustees (and the presidential search committee) when I was hired. Joe is a proud graduate of the College of Letters, a physician and a bio-ethicist. I just read his powerful critique of experiments in Romania on children who had the misfortune to grow up in that country’s orphanages. Joe questions the ethics of randomized studies with children, when it is very likely that those children will be harmed by the conditions being studied. In a recent Hastings Center forum he writes:

One of the salient lessons of twentieth-century bioethics is that scientists cannot always do the experiment they would like to do. When you are not in a lab and unable to control all the variables, if you try to control all the variables, people can get hurt. That is what happened in Romania. And it is a double tragedy because investigators could have had the same policy impact if they had done their research in a different way. They could have been more attentive to the fact that some of the children suffered harm from ongoing early exposure to the orphanages that could have been interrupted.

Joe quotes his COL teacher, philosopher Elisabeth Young-Breuhl:

It is the great task of human beings–the essential task–to understand what adults should give children; what is–to use a legal phrase–“in the best interests of the child.” The basic needs of all children are the same; there are universal needs. And it should be the task of any and all adults to understand those needs and meet them. Children depend upon adults for this understanding, and if it is not applied, not translated into the actions of child-rearing and education, children cannot grow and develop freely and become adults who, in turn, give such understanding and action to their own children.

I sit on the Board of Trustees of the Hastings Center with Joe and Joshua Boger ’73. I so value the way these Wes alumni (and other members of the Hastings Center) connect a deep knowledge of science with questions of politics, policy and ethics. This is at the core of a liberal education. You can read more of Joe’s essay here.
Joe Fins will be on campus to hold a WesSeminar on medical writing, consciousness and human rights over Homecoming Family Weekend. You can find out more here.

Cracking the Genetic Code: Genomic Science and Bioethics

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Thanks, I suppose, to my friends Joshua Boger ’73 and Joe Fins ’82, I joined the board of the Hastings Center last year. At our last meeting, we saw a film that Hastings consulted on with PBS’s NOVA. It has to do with the tremendous advances in genomic science, and the ethical issues that have arisen as the clinical applications of the science become more accessible. Wesleyan’s strengths in science studies are really formidable, and some of those strengths fall into the bioethics category. The Science and Society Program, Feminist, Gender and Sexuality Studies, the Center for the Humanities, the Sociology, History and Philosophy departments are just some of the areas where one can find sophisticated work on bioethics at Wesleyan. And in throughout the life sciences at Wes, one can find advanced work that depends on genomics.

I put his up today on the Huffingtonpost.

On Wednesday, March 28th (9 p.m./8c), PBS will broadcast an important film that explores some of the crucial ethical issues that are emerging from the life sciences: how to use our knowledge of personal genetic information; and who should have access to this information about our individual and familial genetic data? On the one hand, genomic science promises us an unprecedented look at the material sources of our lives, and on the other hand, this science may tempt some to think that we are nothing more than our genetic makeup.

Cracking Your Genetic Code is a joint project of PBS’s NOVA producers and the Hastings Center, a bioethics research center on whose board I sit. The film gives an insightful and moving portrait of how people who suffer from genetic disorders are investing their hopes in genomic science. Designer drugs, like those to combat some forms of cystic fibrosis, are shown to have enormous potential for patients who can get access to them early enough to reverse the ravages of disease. In addition to the patients’ stories, we hear from scientists eager to use their understanding of the genetic bases of disease to prevent symptoms from emerging in future generations. Francis Collins, director of the National Institutes of Health, is particularly compelling as he describes the clinical potential of genomic medicine.

Cracking Your Genetic Code also describes the more troubling potential in our new understanding of our biological heritage. Will we want to know if our genes make it likely that we will develop a life threatening or debilitating disease? Will we want to tell our children, and, if so, when? Will the knowledge be helpful, or just a burden? Who else will know about our genetic destiny? Insurance companies? Advertising firms?

The Hastings Center’s Help With Hard Questions website provides a useful way of navigating in the new world opened up by contemporary genomic science. NOVA, too, has a website that complements the film. Both use social networking to bring together people concerned about what to do with the new knowledge that is available to us through science and technology.

It was not long ago that the goal of cracking the genetic code seemed like a wild ambition. Soon we will be able to get our own personalized genetic information almost anywhere for under $1000. The information tells us about our biological constitution; how will we relate that to our sense of self, family and destiny? Cracking Your Genetic Code raises more questions than it answers — perfectly appropriate as we strive to understand how to use and to protect these new modes of knowledge.

Here’s a clip from the film:

 

Science, Ethics and Liberal Arts Education

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I’ve recently had a series of talks with education officials, journalists and families about liberal arts education. There are international dimensions to these conversations that are exceptionally interesting to me, and I want to return to those in some future blog postings. Some of these discussions have concentrated on contrasts between a broad liberal arts education and a focused, technical study of STEM fields. This has struck me as odd because broad liberal learning also serves these fields so well. Today I am thinking about the ways in which the sciences are linked to the other liberal arts. In some contexts, people talk about the liberal arts and the sciences, as if biology and chemistry, physics and astronomy weren’t already part of the liberal arts. Even at Wesleyan there had been a tendency to make this two cultures mistake, which risks separating the sciences from our liberal arts mission. Regardless of which disciplines come to mind when we hear “liberal arts,” the fact is that almost all our science majors take classes in the social sciences, arts and humanities, and that there has been increasing interest among humanists, artists and social scientists in scientific research practices.

Many of our scientists have been interested in the intersection of their work with the broader community. Peter Patton, long-time faculty member in Earth and Environmental Sciences, recently led a field trip with students to study changes to some deep-rooted ecosystems in Puerto Rico. Last week biologist Janice Naegele spoke with a group of faculty from across the curriculum about her lab’s stem-cell work on brain seizures, and she also teaches classes that emphasize writing about science —   translating research into clear terms for the generally educated reader. Suzanne O’Connell, a scientist now directing our Service Learning Center, has a similar concern about the dissemination of research. You can tune in to her “Science on the Radio” class. And there are plenty of other science faculty I could mention in this regard, as well as students who are helping to teach science to youngsters in Middletown.

Wesleyan’s Science in Society Program is at the heart of our efforts to maintain robust interconnections between the sciences and all the other fields on campus. For example, for many years philosopher Joe Rouse (who heads the program) has explored how scientific legitimacy is achieved, and how specific disciplinary practices in the sciences create modes of understanding. Laura Stark, a sociologist who also teaches in the SiSP program, has just published Behind Closed Doors: IRNs and the Making of Ethical Research. Laura’s work explores how institutional review boards come to approve some experiments and not others, and how their criteria for decision making reflects conceptions of what it means to be human and to have rights. In history, Bill Johnston, Paul Erickson and Jennifer Tucker all connect the sciences to their cultural contexts, as does Gillian Goslinga in anthropology. Jill Morawski, another member of SiSP and a psychologist who has been directing the Center for the Humanities, has been linking the topics at CHUM with issues in the sciences that intersect with philosophy, history, gender studies and ethics. Speaking of ethics, philosopher Lori Gruen’s work in animal studies has been very much influenced by her team teaching over the years with scientists. She has been at the forefront of the university’s curricular development in ethics.

Last year I joined the board of the Hastings Center, a non-partisan research institution dedicated to bioethics and the public interest.  The president of the organization asked me to address the links between its mission in bioethics and the mission of universities and colleges dedicated to liberal arts education. The founders of the Hastings Center knew that science was too important to leave in the hands only of specialists, and over the years the staff has developed a robust research organization that connects advanced scientific work with ethical and policy issues. In a similar vein, I think it’s crucial that liberal arts colleges and universities ensure that higher education isn’t left in the hands only of specialists. We are connecting our schools to the worlds of public life, the economy and the broader culture. These connections will make for healthier and more successful scientific and educational institutions.

Here’s a link to my talk for Hastings: