Ethical Issues in Genetic Testing

Dale Halsey Lea, RN, MPH; Janet Williams, RN, PhD; M. Patricia Donahue, RN, PhD


J Midwifery Womens Health. 2005;50(3):234-240. 

In This Article

Ethical Theories, Principles, and Decision-Making Models

Numerous ethical theories exist, but none of the ethical theories, principles, or decision-making models provide an absolute guide to good action. They do, however, provide a framework for working through decisions by seeking to define the limits of morally acceptable behavior and by elucidating guidelines for making decisions within those limits. In other words, they assist with how to make a decision but not always with what decision to make.

Two approaches to ethical decision making have dominated ethics for a long period of time. Utilitarianism, developed by Jeremy Bentham and John Stuart Mill, defines the moral goodness of actions by their consequences.[4] This theory distinguishes good from bad, with particular emphasis on the happiness generated by the consequences. Those acts are right that produce greatest happiness for the greatest number. Utilitarianism, at times, requires that some good be sacrificed. For example, a baby born with an impairment and a less than "optimal" life would create a great burden for the parents and society. In this case, it would be best that the child die.

Deontologic theories (theories of duties), developed under the inspiration of Immanuel Kant, distinguish right from wrong and emphasize adherence to duty as the primary degree of moral rightness.[5] Right action is determined not by outcomes but by intentions. Instead of examining the consequences of actions, the choice is examined. The principle of respect for another is deeply imbedded in this theory and leads to the idea that respect for another includes respect for autonomous decisions. Informed consent is an application of this respect principle.

One way to think about ethics is to define it as examination of values in human conduct, or the study of what is right conduct.[6] When one considers what is right or correct, it is considered within the context of a situation, the available facts, cultural backgrounds of persons in the situation, and beliefs and attitudes various key players bring to the situation.[7] Ethical decision-making models/frameworks are valuable tools that can assist clinicians in addressing ethical dilemmas. The tools should be sensitive to human needs, responsive to contextual considerations, and should emphasize the uniqueness of each situation.[6]


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