The ethical challenges to developing and evaluating such technologies can be divided roughly into two categories, Shamoo said: those that arise during research and those related to the use of the technologies. Each area has its own particular issues and considerations that must be taken into account.
The field of ethics relating to human research subjects has developed over the past 60 years, and much of that development was prompted by concerns over ethical lapses. For example, the Nuremberg Code was developed in 1947 to set out principles for human medical experimentation in response to what had been uncovered during the Nuremberg trials about experiments performed by Nazi doctors on Jews in concentration camps and other prisoners. The Helsinki Declaration of 1964 was produced by the World Medical Association to be a universally accepted set of ethics principles governing the behavior of doctors and other researchers doing studies with human subjects, and it included many of the same principles set out in the Nuremberg Code. In the United States the Tuskegee Syphilis Study, a controversial 40-year study of nearly 400 poor black farmers with syphilis, led to the establishment in the early 1980s of regulations to protect human subjects and later to the creation of the Office of Protections from Research Risks and to the requirement that federally funded human subjects research be overseen by institutional review boards.
The spirit of all these ethical guidelines was captured in the words of an 85-year-old survivor of the Nazi concentration camps, Shamoo said. Eva Mozes Kor and her identical twin sister were subjects of the experiments that Josef Mengele performed on Jewish concentration camp prisoners during World War II. “They both survived, but they went through several months of hell, and they have come to this country, and she lives now in Terra Haute, Indiana.” Once, Shamoo said, Kor had been invited to talk to a meeting of about 3,000 doctors and medical researchers, and her words remained with him. “She said, ‘You, the scientists of the world, must remember that research is done for the sake of mankind and not for the sake of science.’”
Although there are a variety of regulations covering various areas of research, they are all attempting to formalize the behavior that Kor was advocating: that researchers always remember that their work is done to benefit mankind, not simply to advance science. And as such, Shamoo said, the responsible conduct of research can be encapsulated in a few basic principles.
The first is honesty. Easy to say, easy to understand, but not always easy to adhere to.