Populations and Genetics: Legal and Socio-Ethical Perspectives

By Bartha Maria Knoppers | Go to book overview

Community Engagement in Genetic Research: The
“Slow Code” of Research Ethics?

Eric T. Juengst

Center for Biomedical Ethics, Case Western Reserve University


Introduction

The “slow code” is a euphemism in clinical medicine for a halfhearted attempt to resuscitate a terminally ill patient in cardiac arrest when the clinicians actually think resuscitation is futile. The practice is roundly criticized in medical ethics for subverting the purpose of “calling a code,” evading the real issues at hand, and deceptively attempting to keep up the appearance of “saving the patient” when it is no longer possible to do so. As one popular clinical handbook puts it,

The infamous “slow code,” in which personnel respond
slowly and without energy to an arrest, is reprehensible. It
merely represents the failure to come to a timely and clear
decision about a patient’s resuscitation status. It is crass
dissimulation.1

“Community engagement” has recently become an ethical watchword for population-based studies of human genetic variation. The theoretical aims of community engagement are to allow human populations’ who are the subjects of genetic variation research some meaningful control over the initiation and conduct of that research. This goal echoes the clear obligation to secure informed consent from any human individuals being recruited for research – much as the “slow code” in dying patients echoed the clear lifesaving aim of cardio-pulmonary resuscitation in other rescue situations. Conducting community engagements for genetic variation research is a delicate and hazardous business: issues of representativeness, social identity,

Bartha Maria Kaoppers (ed.) populations and genetics:Legal and socio-Ethical perspectives © 20003 koninklijke Brill NV. printed in the Netherlands.

-181-

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