- BIOETHICS FORUM ESSAY
Public Bioethics Across the Pond
April 1 – Arrive London, ready for three months of lights, city, glamour in the Big Smoke. Pick up a copy of Time Out London, scan this week’s activities so that I can jump into the action. Clubs, disco, theatre, baroque music in historic churches, restaurants, street markets, bioethics.… Bioethics??? Yup, right up there in the “Don’t Miss” section is an announcement from the Dana Centre, inviting adults to “Nano-Games: Play the nanotechnology card game.” Apparently we would “Play the Democs game to find out more about the ethical issues surrounding nanotechnology.” How could I resist?
As I would discover, the Dana Centre is just one of the players in a lively public bioethics scene that attempts to draw “the man on the Clapham Bus” into a grassroots discussion of issues such as genetic testing, nanotechnology, and reproductive medicine. The attempt is not yet a complete success, but the multipronged effort is fascinating and much of it worthy of emulation.
The Dana Centre bills itself as a “stylish…venue, complete with a cafèbar, appealing to adults. It’s the place for experimental dialogue events, blending the best from science, art, performance and multimedia to provoke discussion and real engagement with the key issues of the day. In the Dana Centre you’ll see science delivered in a very different way, everything from Edinburgh-Fringe-style stand-up comics debunking science myths to updates on radical research… and challenging debates on modern science.” In common with every science education activity I encountered in the U.K., it is partially supported by the Wellcome Trust, as well as the British Association for the Advancement of Science.
When I arrived for the Nanoscience event, I joined seven other people at one of several round tables in the café. Drinks and snacks in hand, we proceeded to introduce ourselves, turning out to be a mix of scientists, educators, and students. The game we were about to play was developed with Wellcome Trust funding by Democs (DEliberative Meeting Of CitizenS), the brainchild of The New Economics Foundation. Democs is a series of card games that “enables small groups of people to engage with complex public policy issues. It helps people find out about a topic, express their views, seek common ground with the other participants,” and express policy preferences.
Following a short presentation about nanoscience (partly tracking the exhibit on the same topic at the Science Museum next door), we players were instructed to draw cards, which had pithy facts about nanoscience. As the game progressed, we chose and discarded cards and discussed with tablemates our reactions to what we were learning. The final segment involved various policy options, which the members of each table discussed among themselves and then presented to the group as a whole. The whole exercise was somewhat rushed and superficial, but I certainly came out much more savvy about nanoscience than I had been when I arrived. I had also made a couple of new British friends, and learned to say “crisps” instead of “potato chips.”
The next week I attended a more formal program at the Dana, where three scientific experts, hosted by a well-known media personality, spoke about the clinical implications of nanotechnology to a (rather skeptical) audience composed mostly of physicians. My third and final Dana experience was perhaps the most ambitious, but also the least successful. Entitled Meet the Mighty Gene Machine, the program posited a “machine” that could cheaply and easily read one’s entire genome, and then raised ethical and legal issues such as who should have access to the information. Unfortunately, the first half of the evening was spent on a talk-show spoof in which the hostess was quite disconcerted to find out that the “Gene Machine” could discover her natural hair color! An interesting exercise (reminiscent of Tom Murray’s work challenging “genetic exceptionalism”) asked participants to rate certain traits (intelligence, eye color) along a scale of purely genetic to purely environmental. However, without designated experts in the room, the combined wisdom of the various café tables was simply accepted as gospel by the hosts, and I fear that some people might have left with more misconceptions than truth.
My first week in London also introduced me to another, more narrowly focused, public player: PET (Progressive Education Trust). I have subscribed for years to their free weekly emails reporting reproductive technology news from the U.K. and elsewhere; now I took the opportunity to attend a public meeting tackling the difficult topic of whether Britain’s Human Fertilisation and Embryology Authority should remove the requirement that clinicians must take into account the “welfare of the child” when deciding whether or not to help people to become pregnant. My rather romantic notion of “the public” coming in off the street to debate this topic was soon jettisoned as I realized that everyone in the audience was representing one or another interest group. Speakers, including a clinician and philosopher Onora O’Neill, took on an audience made up mostly of skeptics. The prevailing view seemed to be that the “welfare of the child” requirement merely allowed clinicians to discriminate against nontraditional families, such as lesbian couples. The evening ended with a move to the local pub where the debate continued on a less formal basis. I made some more new friends and, “crisps” in hand, allowed Baroness O’Neill to stand me “a half.”
PET is unabashedly in favor of human embryo research and assisted reproduction. Its goal is to educate the public “in the field of human reproduction and genetics.” PET’s activities include discussions across the country on such topics as whether the National Health Service should pay for fertility treatment, how fertility services should be regulated, and the implications of gamete donation after a recent law removed donor anonymity.
PET acts as advisors to a national effort: Jeans for Genes Day. Children all over the country wear jeans to school to “denimstrate” that they care for children with genetic disorders, and to raise money for national charities working to help those children. Activity Packs, keyed to standardized science lessons already present in primary and secondary curricula, include a booklet on genetics for the teaching staff, classroom posters, personal stories of children and families living with genetic disorders, and interactive activities that introduce basic facts about genes and inheritance at appropriate levels. PET also advised the BBC on a recent series of television programs dealing with families coping with such conditions as progeria (premature aging).
The Wellcome Trust, while funding activities from other organizations, is also a major player on the public science scene. The Trust is “an independent biomedical research-funding charity that aims to improve human and animal health. [Its] young people’s education program sets out to promote scientific literacy, connect modern biomedical science with the ethical and social challenges it poses and place research in a historical and cultural context.” The Big Picture Series is just one of the Trust’s education initiatives. Each issue of Big Picture is aimed at teachers and students over the age of 16. In magazine format, topics include obesity, aging, genetics, sex and gender, and infectious disease. Along with engaging graphics, concentrated information, and suggested activities, Big Picture includes balanced and provocative introductions to associated ethical and social issues. Games and other interactive web activities increase the depth of the series. In the “Obesity” unit, for example, students get to play an interactive game in which they attempt to raise a virtual young creature, an “OB.” OBs have a tendency to become obese, although what happens to your particular OB will depend on a mix of chance, genotype, socio-economic setting, and upbringing (that’s where you come in). I was lucky; despite a combative personality that resisted many of my interventions, and stressors like classroom bullying, my OB managed to make it through adolescence without becoming obese. After they attempt to bring up one healthy OB, students are challenged to think about how they would deploy resources to combat obesity. Would they invest in genetic engineering? Antipoverty measures? Parenting classes?
I was fascinated by the Wellcome Trust Gallery at the British Museum. Called “Living and Dying,” the spacious exhibit took an anthropological view of life across cultures, emphasizing how people all over the globe share basic challenges of birthing, educating, and feeding children; living together; coping with disaster and disease; managing death; and relating to the spirit world. A quirky exhibit entitled “Cradle to Grave by Pharmacopoeia” explored contemporary approaches to health and sickness in Britain today. Textile artist Susan Freeman, video artist David Critchley, and Liz Lee, a physician, had constructed two lengths of fabric, 20 yards long, that illustrated the medical stories of a man and a woman. Each piece contained over 14,000 drugs, the estimated average prescribed to every person in Britain in their lifetime, incorporated in “pockets” of knitted nylon filament. Also integrated into the fabric were medical documents, personal objects, and photos with captions that described typical events in people’s lives. The artists meant these to show that “maintaining well-being is more complex than just treating illness.”
Reviewing my calendar as I prepared to leave London, I was astonished to see how many bioethics activities were part of my social life – interspersed with visits to the Globe and walks in Kew Gardens and tours of famous palaces. There’s certainly a lot the U.K. could do better, but there’s also a lot that we could learn from what’s happening on the other side of The Pond.
– Dena S. Davis