The production and use of data, like all human endeavors, raise ethical questions. We won’t discuss the telemarketer who begins a telephone sales pitch with “I’m conducting a survey,” when the goal is to sell you something rather than collect useful information. Such deception is clearly unethical. It enrages legitimate survey organizations, which find the public less willing to talk with them. Neither will we discuss those few researchers who, in the pursuit of professional advancement, publish fake data. There is no ethical question here—faking data to advance your career is just wrong. It will end your career when uncovered. But just how honest must researchers be about real, unfaked data? Here is an example that suggests the answer is “More honest than they often are.”
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EXAMPLE 1 Missing details
Papers reporting scientific research are supposed to be short, with no extra baggage. Brevity can allow the researchers to avoid complete honesty about their data. Did they choose their subjects in a biased way? Did they report data on only some of their subjects? Did they try several statistical analyses and report only the ones that supported what the researchers hoped to find? The statistician John Bailar screened more than 4000 medical papers in more than a decade as consultant to the New England Journal of Medicine. He says, “When it came to the statistical review, it was often clear that critical information was lacking, and the gaps nearly always had the practical effect of making the authors’ conclusions look stronger than they should have.” The situation is no doubt worse in fields that screen published work less carefully.
The most complex issues of data ethics arise when we collect data from people (but research with animals also raises ethical issues—see Exercise 7.45 online). The ethical difficulties are more severe for experiments that impose some treatment on people than for sample surveys that simply gather information. Trials of new medical treatments, for example, can do harm as well as good to their subjects. Here are some basic standards of data ethics that must be obeyed by any study that gathers data from human subjects, whether sample survey or experiment.
Basic data ethics
The organization that carries out the study must have an institutional review board that reviews all planned studies in advance in order to protect the subjects from possible harm.
All individuals who are subjects in a study must give their informed consent before data are collected.
All individual data must be kept confidential. Only statistical summaries for groups of subjects may be made public.
If subjects are children, then their consent is needed in addition to that of the parents or guardians.
Many journals have a formal requirement of explicitly addressing human subjects issues if the study is classified as human subjects research. For example, here is a statement from the instructions for authors for JAMA (Journal of the American Medical Association):
For all manuscripts reporting data from studies involving human participants or animals, formal review and approval, or formal review and waiver, by an appropriate institutional review board or ethics committee is required and should be described in the Methods section.
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For situations where a formal ethics review committee does not exist, the Journal of the American Medical Association instructs investigators to follow the principles outlined in the Declaration of Helsinki. When human subjects are involved, investigators are to state in the Methods section the manner in which informed consent was obtained from the study participants (that is, oral or written). Also, the law requires that studies funded by the federal government obey these principles. But neither the law nor the consensus of experts is completely clear about the details of their application.