: The way patients make health care decisions is much more complicated than is often recognized. Patient autonomy allows both that patients will sometimes defer to clinicians and that they should sometimes be active inquirers, ready to question their clinicians and do some independent research. At the same time, patients' active inquiry requires clinicians' support.

In this commentary I assess the possible harms to a fetus with trisomy 18 of continued life. I argue that, although there is good reason to avoid subjecting infants to major surgery and prolonged intensive care where there is little chance of benefit, doctors should support and engage honestly with parents who decide to continue their pregnancies. We should ensure that infants with trisomy 18 have access to high quality palliative care.

As an ethicist trained in narrative, I wondered what I could offer Dr. Darcy at this point, two weeks after the events he described. And what might I have offered those involved if they had called an ethics consult at the time? One of this physician's implicit questions was, “How might this have unfolded in a better way?”When difficult choices must be made, how can a narrative approach help? A narrativist focuses less on principles, rules, and law than would a (...) philosopher or a lawyer. This is not to say that we ignore the law or are unaware of bioethical principles. But where do we go from there? Narrative offers a mode of engagement that asks different kinds of questions than those that law or philosophy might ask about moral agency, context, and values. (shrink)

Although deeply committed to the model of nondirective counseling, most genetic counselors enter the profession with certain assumptions about health and disability—for example, that it is preferable to be a hearing person than a deaf person. Thus, most genetic counselors are deeply troubled when parents with certain disabilities ask for assistance in having a child who shares their disability. This ethical challenge benefits little from viewing it as a conflict between beneficence and autonomy. The challenge is better recast as a (...) conflict between parental autonomy and the child's future autonomy. (shrink)