Issue #16: Fall 2006

What’s Good, What’s Bad, and Who Decides

By David Secko

How do we make ethical decisions in a world where “right” is a relative judgment? A new project at UBC’s Centre for Applied Ethics wrestles with such issues, and wants to know what you think.

GENOME SCIENCE – the study of genes and their functions – provides a rich environment for the W. Maurice Young Centre for Applied Ethics. One of its current projects is GE3LS ARCH, which combines studies in Genomics, Ethics, Environment, Economics, Law, and Society. The acronym is a mouthful (users pronounce it “gels”), but it reflects an emerging multidisciplinary approach to genome science that studies the ethical challenges raised by humankind’s ability to quantify, and modify, the genetic makeup of living things.

Determining the ethical underpinnings of these issues is not as simple as it might seem. Biobanks, for instance – large repositories of genetic information – raise concerns about privacy, ownership and consent, while research to decode the salmon genome raises concerns about the food we eat, the food they eat and the environment we all share. Work being done in the forests and with worms raise issues of intellectual property rights while the growing use of genetically modified animals in biomedical research has opened the door to new challenges in animal welfare. And this is only the beginning.

Neither abstract reasoning nor empirical research make a universally convincing argument that it’s ethical (or unethical) to build a nationally-funded biobank, to declare private ownership of the genome of a genetically modified mouse, or to decode the genetic makeup of an organism as culturally iconic as a sockeye salmon. But to the growing number of faculty and students involved in the GE3LS ARCH, convincing the public or researchers to behave in certain ways is not their intent: understanding ethical decision making is what interests them.

MARSHALL NIRENBERG first cracked the genetic code in 1961. He may have thought of many things at that eureka moment: its implications for future research, the promise of biotechnology, or maybe he was just plain giddy. It is a safe bet that he did not think about how his work would change the careers of so many ethicists, social scientists and philosophers.

Significant parts of all three fields are now caught up in studying the social effects of biotech and UBC’s Centre for Applied Ethics is in the forefront of this research, using a diverse team of researchers and a collection of old and new tools to understand more clearly the social norms that Canadians use to make judgements about genome research and it applications.

This fits well with the Centre’s purpose. Created in 1993 as an independent unit in the faculty of Graduate Studies, the Centre works to advance research in applied ethics in “science and technology ethics and policy, organizational ethics, animal welfare and the environment, and research ethics.”

This is normally played out in large projects, including the multi-year Ethics of Health Research and policy Training Program and the recently awarded Centring the Human Subject in Health Research: Understanding the Meaning and Experience of Research Participation. The three year, $1.9 million Canada- and Genome BC-funded Building a GE3LS Architecture—the GE3LS ARCH – brings together four faculty with backgrounds in health, philosophy, intellectual property rights, the philosophy of science, computing science, and animal welfare.

APPLIED ETHICS – the study of the use of ethical knowledge – mixes theories of ethics with scholarly work in the social sciences and humanities to inform decisions about complex human problems. The movement from formal to applied ethics largely began in the 1960s, when the civil rights movement, Vietnam, abortion and developments in medical technology created dilemmas not easily solved by applying moral absolutes. Should we keep loved ones alive artificially? Who has the right to make life or death decisions about foetuses? Is it ever all right to invade another country unprovoked? Can civil rights be denied some members of society and not others? Philosophers and ethicists, always part of the debates, were moved to enter the public arena.

Many moral theories attempt to define what makes a “good” decision – one that underpins morality with virtues, duties or the consequences of actions – but since these theories often contradict each other and are open to interpretation, using just one opens any judgement or decision to criticism or derision. While the Enlightenment introduced the now widely contested idea that reason could solve all ethical issues, for many, differences of opinion over right and wrong appear to be a reflection of social circumstances rather than firm moral truth. As Rick Salutin put it in a recent Globe and Mail column entitled Ethics Shmethics. “By its nature, ethics belongs to each person. All claims to expertise diminish that broad application.”

“Applied ethics does not simply apply individual ethical theories to real life problems and produce an answer,” says Michael Burgess, co-principle investigator in the GE3LS ARCH and UBC’s chair in Biomedical Ethics. Instead, applied ethics takes a range of approaches to problems and applies these sometimes-diverse theories to give a more comprehensive account of what is a better or a worse decision given a particular situation. With no one theory accepted as always true, being practical, clear and rigorous is the next best thing. “We need an approach to applied ethics that lies between the notion that all moral convention is arbitrary and the notion that there exists an absolute moral truth,” says Burgess.

Cultural beliefs, as well as society’s laws and policy, reflect our presumption that some things are right or wrong, good or bad. If ethics is simply the search for ways to justify these beliefs, then the determination of right and wrong depends, to some extent, on the cultural, political and social context in which the determinations are made.

It doesn’t follow from this that there is a set of principles, or an absolute moral truth, that all people will accept as the basis for ethics. That hasn’t stopped people from trying, or from arguing that they have found a moral truth to guide our decisions. Many philosophers spend their lives searching for a universal expression of right and wrong to help provide clear responses to difficult problems.

GE3LS ARCH researcher Holly Longstaff – a Centre-based PHD candidate funded through the Ethics of Health Research and Policy Training Program – says that in spite of the fact that ethical principles are likely both real and subjective, in today’s world, ethical principles alone can be inadequate for dealing with some moral questions.

And biotech provides some prime examples. Reasonable people often come to opposite conclusions about whether we should genetically modify our food. While some people foresee a great benefit (e.g., feeding growing populations) others see unacceptable risks to our health and environment. The disagreement, heated by inconclusive research on possible future effects, makes it difficult to know the role ethics should play in setting policy on how or whether the applications of biotechnology should be regulated.

Burgess recognizes the conundrum but argues that ethics, especially applied ethics, has an important role to play in such decisions. “We live in a world where judgements about rights and responsibilities must be made in [the context of the times]. Old style authoritative ethics would have us collaborate with scientists to assess what genome research activities or applications are permissible or wrong,” but Burgess and the other team members have no interest in being ethics police.

With no absolute moral theory to draw on, Burgess, his co-principle investigator and Centre director, Peter Danielson, and GE3LS ARCH co-applicants and Centre faculty Dan Weary (NSERC Industrial Research Chair in Animal Welfare), and Ed Levy (Adjunct Professor in Ethics and Science) are building something new in their applied ethics teams. Organized to assess alternative ways that expert and public perspectives can come together to inform policy choices, these teams draw faculty and students from Science and Arts departments into related and linked projects. (This is not only appropriate for the Centre’s interdisciplinary focus, but is also mandated by the very nature of research that can encompass Genomics, Ethics, Environment, Economics, Law, and Society.)

“We’re interested in designing approaches to ethics that help with important, real world problems,” says Burgess. “Many decisions are still ethical decisions, but the authority for them must now come from [a wider representation of the population.] Most challenging ethical issues are not resolvable with a single clear principled answer. An alternative is to develop democratic approaches to assessing the kind of society we want and the role of biotechnology in that society.”

An example of how the GE3LS ARCH is seeking such public input is a technique (and a research group) called Norm Evolution in Response to Dilemmas (NERD). Developed by Danielson and his team (philosophy, computer modelling, environmental studies, journalism, medicine, risk communication, anthropology, applied ethics), NERD uses online surveys to find out how a person’s preferences and beliefs change in response to dilemmas presented in imaginary social scenarios. The first survey (still available at www.yourviews.ubc.ca) was based on the social, governmental and medical response to issues around beta thalassemia, a genetic blood disorder passed on to the children of parents who both have the gene for the disease. The survey takes respondents through a series of steps in the evolution of a societal response to the issue of beta thalassemia, and asks them to decide issues that include funding genetic tests, denying marriage licenses to carriers, and allowing abortions for children conceived by two carriers.

By design, the survey provides information on varying perspectives on the issues. Respondents can access the comments of a physician, a bureaucrat, “yes” and “no” activists, even an ethicist to help clarify the complex issues. In that way, respondents’ decisions are based on immediate conditions, not abstract beliefs.

Danielson argues that understanding how people’s preferences change while being led through this and other surveys helps reveal how they make ethical decisions in the real world. “While ethical decision making has a strong subjective element, there are also strong objective features,” says Danielson. In fact, “Canadian social norms can be quite objective.”

In the Quest case, for example (before the courts in BC at this writing), about teachers being involved sexually with students, everyone agrees that abuse by teachers is a bad thing. But other aspects of the case, such as applying current laws to past incidents, are being debated. Hence, a core set of Canadian beliefs can co-exist with contested and changing ones.

NERD provides an empirical technique to understand better how Canadian beliefs evolve. “NERD brings more quantitative social science to ethics than do most working applied ethicists,” says Danielson, who is about to launch a newer and more dynamic version, NERD V.2. However, it is not the only tool used by GE3LS ARCH teams. Burgess’s Face-to-Face group and Weary and Levy’s teams use focus groups, personal interviews and various democratic forums to draw in even more perspectives. Burgess has used previous experience working with both multi-disciplinary and public groups, as well as under-represented groups to move his research toward studies in democracy and science, technology and society. Weary is gearing up to survey animal use in biotech. Levy and his team are already six months and many interviews into collaborative work researching alternative intellectual property regimes.

Pronouncements about what is absolutely good or absolutely bad aren’t likely to go away, nor are arguments passionately stated from both sides likely to decrease in volume. But it’s becoming increasingly clear that the decisions we make as a society about the use of genetic information must reflect the cultural and social context of our times, and include extensive input from all of us.

Longstaff agrees. “When I say I’m in ethics, most people jump on me for telling everyone what is right and wrong. But applied ethics is really just a lens for getting people to talk about the world we want to live in.” ¤

David Secko, PHD’04, MJ ’06 is a Vancouver science writer and a post doctoral fellow at the Centre for Applied Ethics.