It is widely thought that genetic counselors should work with parents “nondirectively”: they should keep parents informed and support their decisions. But this view misconceives human decisionmaking by failing to recognize that value choices are constructed within and constrained by a community. Acknowledging that decisions involve interaction with and responsibility toward others leads to a “dialogical” model of counseling, in which genetic counselors may question and guide parents’ decisions.

The increase in the scope of international collaborative medical research involving human subjects is raising the problem of whether and how to maintain Western ethical standards when research is conducted in countries with very different social and ethical values. Existing international ethical guidelines for research largely reflect Western concepts of human rights, focusing on the bioethical principles of respect for persons, beneficence, and justice. However, in countries and societies where these values are understood differently or are not expressed in local (...) cultures and institutions, it may be impossible or of no practical value to insert them into the research setting.In the United States, individual informed consent is considered ethically imperative for research involving human subjects. However, this imperative may be difficult to instill in societies that define persons by their relations to others, and important decisions are commonly made by heads of households or group leaders rather than by individuals. The baseline economic and health care conditions in foreign communities may also create ethical conflicts. (shrink)

The increase in the scope of international collaborative medical research involving human subjects is raising the problem of whether and how to maintain Western ethical standards when research is conducted in countries with very different social and ethical values. Existing international ethical guidelines for research largely reflect Western concepts of human rights, focusing on the bioethical principles of respect for persons, beneficence, and justice. However, in countries and societies where these values are understood differently or are not expressed in local (...) cultures and institutions, it may be impossible or of no practical value to insert them into the research setting.In the United States, individual informed consent is considered ethically imperative for research involving human subjects. However, this imperative may be difficult to instill in societies that define persons by their relations to others, and important decisions are commonly made by heads of households or group leaders rather than by individuals. The baseline economic and health care conditions in foreign communities may also create ethical conflicts. (shrink)

Nondirective genetic counseling developed as a means of promoting informed and independent decision-making. To the extent that it minimizes risks of coercion, this counseling approach effectively respects client autonomy. However, it also permits clients to make partially informed, poorly reasoned or ethically questionable choices, and denies counselors a means of demonstrating accountability for the use of their services. These practical and ethical tensions result from an excessive focus on noncoercion while neglecting the contribution of adequate information and deliberative competence to (...) autonomous decision-making. A counseling approach that emphasizes the role of deliberation may more reliably produce thoroughly reasoned decisions. In such an approach, characterized by dialogue, counselors are responsible for ensuring that decisions are fully informed and carefully deliberated. Counseling remains nonprescriptive, but in the course of discussion counselors may introduce unsolicited information and/or challenge what they believe are questionable choices. By this means clients can be better assured that the decisions they make are fully considered, while counselors demonstrate a limited degree of professional accountability. (shrink)