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A Framework for Thinking Ethically About Human Biotechnology
Modern biotechnology, with its focus on molecular biology and its concern for increasing human health and life spans, is all about the future. This biotech future presses in daily, sparking imaginations. At the same time, it elicits wariness or even fear that humanity is gaining too much power or too little choice over human evolution and destiny. The political climate, permeated as it is by a ferocious "moral approach" to science policy, heightens this public concern. We seem to have lost our capacity for rational discourse in the public arena. The biotech industry has increasingly realized that not only regulatory schemes but also contentious public and political debate can either enable or constrain research and development. For better or worse, science is political.
We Can, But Must We?
As human biotech research continues, scientist and layperson alike have the opportunity to deliberate about the ethical ramifications of the possible futures opened by scientific research. The science of ethics asks us to justify our actions and account for our intentions. It is not enough just to intend the good or to do something to bring it about. We must give good reasons why we do what we do. In the realm of biotechnology, our reasoning needs to address three main areas:
When considering ethical reasons for our actions, it is prudent to avoid "the Dolly effect," that is, attempting to slam the ethical door well after the sheep has scurried away. The unanticipated arrival of new biotechnologiesfrom cloning to xenotransplantationleaves the public, and the scientific community, without a framework for considering the attendant ethical issues. As we quickly learned after Dolly's birth announcement was published in the New York Times, paying close attention to the direction biotechnology is headed is infinitely better than potentially overreacting once it gets there. To avoid the Dolly effect, the biotech community must initiate ethical discussions within itself and with the wider public.
Questions Come First
Along with the "golly wow" response to biotech innovation, we must ask, What are the personal and social impacts of biotechnology? What are its potential impacts on our values, our virtues, and our relationships? Does a particular application of biotechnology protect or endanger human or individual rights? Are the benefits and burdens distributed fairly? Does biotechnology advance or impede the common good? What are the risks, burdens, and benefits? On whom do they fall? How are they distributed? What is an acceptable way to achieve a given benefit? May we do anything, as long as the outcome is good on balance? Or are there limits on what we do, even in the name of human health? And, whator whomhave we not thought about?
The first step in answering any of those questions is quite difficult for people not well-versed in human biology and genetics: Get the facts. Many disagreements result from not grasping the facts of the matter. It is impossible to make sound judgments about the appropriate uses of genetic testing, for example, without understanding some genetic science and the nature of the information gathered through such testing. It is incumbent upon scientists and others working in biotechnology to educate the public in general, and the media in particular, about the scientific method and experimental results. The trend toward releasing experimental results to the press before publication in a peer-reviewed journal, which is problematic in and of itself, at least requires scientifically savvy journalists whose duty is, in turn, to provide an adequate set of facts to the public.
Utilitarianism: One way to think about "the ought" is through the lens of utility, which looks at various options for action, asking who will be affected and to what extent each stakeholder will be benefited or harmed. In the utilitarian view, an ethical action is the one that produces the greatest balance of good over harm or the greatest good for the greatest number of people. Regarding research in human molecular genetics, for example, the utilitarian might argue that the potential benefit of relieving human suffering outweighs the possible dangers of manipulating human genes and evolution through germ-line intervention.
Rights: A different approach presumes that what makes human beings more than mere things is our ability to choose freely what type of lives to lead and the right to have our choices respected. This view from rights describes an ethical action as that which protects people from being used in ways that they do not choose. Importantly, each human has a right not to be treated as means to another's end, even an undeniably good end. The right not to be used encompasses other rights: the right to be told the truth, the right to privacy, and the right not to be harmed are among those particularly relevant to biotech research and genetic medicine. For example, respecting rights may set limits on human subject research in molecular genetics by requiring adequate informed consent including an honest assessment of risks and benefits, or it may require that experimental gene transfer therapy be undertaken only as a last resort. In this view, actions that violate individual or human rights are wrong.
The justice approach to ethics is rooted in the principle of "treating equals equally and unequals unequally." Justice mandates fairness in that people must be treated the same way unless they differ in ethically relevant ways. For example, when two runners cross the finish line at the same time, it is unfair to award the blue ribbon to Jeff and not to Jake unless, for example, Jake has cheated.
The primary form of justice in medicine and medical research is distributive justice, which is concerned with the fair distribution of benefits and burdens across society. Distributive justice seeks clarity regarding those aspects of individuals and society that may justify drawing distinctions in how benefits and burdens are allocated. That is, it seeks to identify under what conditions treating unequals unequally would be justified. Such material conditions could include distribution based on determinations of need, social worth, contribution, or effort. For example, the principle of need would support mechanisms for providing access to cutting-edge treatments to all who would tangibly benefit irrespective of their ability to pay for them. A principle of contribution might suggest that a family who sponsored research into an illness might have more influence on the direction of the research and greater access to its fruits than the rest of us.
The common good rests on a vision of society in which all people join in the pursuit of shared values and aims. Because individual good is inextricably woven into the good of the whole community, pursuing the common good includes creating a set of general conditions that are equally to everyone's advantage. Together with respecting individual rights and freedoms, the common good approach requires that common goals, such as human health and well being, be pursued through biotech innovation and a stable health care infrastructure.
A consideration of virtue assumes that certain ideals allow for the full development of our humanity. A person who has inculcated these core ideals, or virtues, will do what is right when faced with an ethical choice. Virtues are dispositions that facilitate acting in ways that develop human potential and allow human flourishing. Virtues are good habits in that they are acquired through repetition and practice and, once acquired, they become characteristic of a person. Honesty, integrity, prudence, courage, wisdom, and compassion are examples of virtues. Once a person has developed a virtuous character, his or her inclination is to act in ways consistent with ethical principles. In much the same way as Barry Bonds is inclined to hit home runs, the virtuous person will be inclined to tell the truth and act with compassion and courage.
Virtue ethics, with the emphasis on character and ideals, captures the idea of "the good scientist"intelligent, honest, compassionate, determinedmuch more so than the principle-based approaches of utility, justice, and rights. The development of pharmaceuticals for "compassionate use" echoes an ethics of virtue.
Reasoning into Biotech Practice
Putting It Together
As we deliberate, we have a further obligation. Because biotech innovations may eventually involve germ-line manipulation, the actions we take today may affect every future generation of human beings, making the coming generations stakeholders in our ethical analysis. Consideration of transgenerational consequences may impose limits on what we do now in the interest of those who come after us. Minimally, we should not knowingly inflict harm. Many indigenous peoples speak of responsibilities that extend to the next seven generations. There is moral wisdom for us in that approach. As we approach cutting-edge issues in biotechnology, this very ancient moral wisdom can serve us well.
Margaret R. McLean, Ph.D. is the Director of Biotechnology and Health Care Ethics at the Markkula Center for Applied Ethics at Santa Clara University.
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