第1章生命の探究

Scientists must ensure that their efforts do not cause undue damage to humans, animals, or the environment. They also must ensure that their research and communications are free of bias and that they properly balance financial, legal, safety, replicability, and other considerations. All scientists -- and many people in other fields -- have these ethical obligations, but those in the life sciences have a particular obligation because their research may involve people or other living things. Bioethics is thus an important and continually evolving field, in which researchers collaborate with other thinkers and organizations. They work to define guidelines for current practice, and also continually consider new developments and emerging technologies in order to form answers for the years and decades to come.

For example, bioethicists may examine the implications of gene editing technologies, including the ability to create organisms that may displace others in the environment, as well as the ability to “design” human beings. In that effort, ethicists will likely seek to balance the positive outcomes -- such as improved therapies or prevention of certain illnesses -- with negative outcomes.

Unfortunately, the emergence of bioethics as a field came after a number of clearly unethical practices, where biologists did not treat research subjects with dignity and in some cases did them harm. In the 1932 Tuskegee syphilis study, 399 African American men were diagnosed with syphilis but were never informed that they had the disease, leaving them to live with and pass on the illness to others. Doctors even withheld proven medications because the goal of the study was to understand the impact of untreated syphilis on Black men.

While the decisions made in the Tuskegee study are unjustifiable, some decisions are genuinely difficult to make. Bioethicists work to establish moral and dignifying approaches before such decisions come to pass. For example, doctors rely on artificial intelligence and robotics for medical diagnosis and treatment; in the near future, even more responsibility will lie with machines. Who will be responsible for medical decisions? Who will explain to families if a procedure doesn’t go as planned? And, since such treatments will likely be expensive, who will decide who has access to them and who does not? These are all questions bioethicists seek to answer, and are the types of considerations that all scientific researchers take into account when designing and conducting studies.

Bioethics are not simple, and often leave scientists balancing benefits with harm. In this text and course, you will discuss medical discoveries, vaccines, and research that, at their core, have an ethical complexity or, in the view of many, an ethical lapse. In 1951, Henrietta Lacks, a 30-year-old African American woman, was diagnosed with cervical cancer at Johns Hopkins Hospital. Unique characteristics of her illnesses gave her cells the ability to divide continuously, essentially making them “immortal.” Without her knowledge or permission, researchers took samples of her cells and with them created the immortal HeLa cell line. These cells have contributed to major medical discoveries, including the polio vaccine. Many researchers mentioned in subsequent sections of the text relied on HeLa cell research as at least a component of their work related to cancer, AIDS, cell aging, and even very recently in COVID-19 research.

Today, harvesting tissue or organs from a dying patient without consent is not only considered unethical but illegal, regardless of whether such an act could save other patients’ lives. Is it ethical, then, for scientists to continue to use Lacks’s tissues for research, even though they were obtained illegally by today’s standards? Should Lacks be mentioned as a contributor to the research based on her cells, and should she be cited in the several Nobel Prizes that have been awarded through such work? Finally, should medical companies be obligated to pay Lacks’ family (which had financial difficulties) a portion of the billions of dollars in revenue earned through medicines that benefited from HeLa cell research? How would Henrietta Lacks feel about this? Because she was never asked, we will never know.

To avoid such situations, the role of ethics in scientific research is to ask such questions before, during, and after research or practice takes place, as well as to adhere to established professional principles and consider the dignity and safety of all organisms involved or affected by the work.