Chapter 1. Ethics in Human Research: Violating One’s Privacy

Short Description

Research with human participants involves important ethical issues.

Long Description

Both the American Psychological Association and the British Psychological Society urge researchers to obtain the informed consent of participants, to treat information about individual participants confidentially, and to protect all those involved in a study from harm and discomfort. As you watch this video, ask yourself whether these guidelines are followed.

This program presents research on the genetic basis for physical disorders. Iceland, a country with a relatively small, isolated population of citizens with a very similar genetic makeup provides an excellent laboratory for study of this important issue. By studying the family histories of those with specific disorders, deCODE, a private Icelandic research firm, hopes to discover the genetic predispositions to a variety of specific illnesses. In order to do this the company has sought access to the medical records of all citizens. These records provide important insights into the lifestyle factors, for example, drug use and sexual habits, that may interact with genes to produce a disease. In 1988, Iceland's parliament provided such access. Only those residents who request to be excluded in writing are exempt.

deCODE may market its research databank to others including healthcare organizations that could deny medical coverage to those at high risk for illness. One Icelandic resident who suffers from multiple sclerosis joins a vocal minority who objects to the potential invasion of privacy. She is concerned that members of her family may be denied medical insurance because of their genetic susceptibility to illness. Although deCODE aims to protect the confidentiality of individuals, the director acknowledges that such confidentiality cannot be guaranteed.

Other residents of Iceland are willing to assume the personal risk in order to reap the potential benefits of the research. The program interviews two members of one family with a long history of osteoarthritis. They express their hope that the cause of their family illness will be identified and that future descendants will be spared suffering from the disorder.

A critic in the United States recognizes the important contribution that deCODE's efforts can make to promoting human good. At the same time, he expresses concern that it fails to show adequate sensitivity to ethics and human rights.

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