06 May 2008

New York: Genetic counseling forum

New York University Law Professor Arthur S. Leonard reports and comments on law, music, film, current events with a special emphasis on sexuality and the law.

He covered a panel at the Jewish Community Center in Manhattan, co-sponsored by The Jewish Week - "A World Without Genetic Disabilities: A Mixed Blessing?"

The event was inspired by New York Times journalist Amy Harmon's two articles published in May 2007 and focusing on ethical issues raised by genetic counseling. She won a Pulitzer Prize for her reporting on the impact of DNA knowledge on our lives. Harmon also participated in a genetics panel at the 26th IAJGS International Conference on Jewish Genealogy (August 2006, New York City).

Harmon introduced and moderated panelists Dr. Harry Ostrer (NYU School of Medicine, Director of Human Genetics Program), Adrienne Asch (Yeshiva University, Director of Center for Ethics), Rabbi Mordechai Liebling (Reconstructionist Rabbi, Father of Lior in the film Praying with Lior, the story of a Down syndrome child preparing for his bar mitzvah), and Nancy Neveloff Dubler (Einstein Medical College, Director of Center for Ethics and Law in Medicine).

A short description of the problem might go this way: as our scientific knowledge expands making it increasingly possible to foretell or predict physical and mental "abnormalities" by genetic testing of prospective parents, embryos conceived in vitro, or fetuses in situ (amnio testing), the question becomes what tests should be offered, what tests should be performed, how the results should be communicated to prospective parents, and who ultimately should be making decisions about which children should be conceived and carried to term.

Leonard describes the panelists' range of opinions as well as those of attendees.

As the panel moved from presentations to Q&A, it became clear that there were bigger differences than had first appeared, most notably between Rabbi Liebling, who had gone with his family to D.C. to lobby Congress in support of a proposal to adopt federal statutory standards for genetic counseling that would require "balanced counseling," presumably to avoid the assertedly common situation of counseling that channels parents into deciding to abort Down syndrome fetuses based on a wholly negative recital of the facts, and Prof. Dubler, who argues that these issues should be handled by rethinking of ethical standards and professional practices within the self-governing professions and not by legislation. Another opening was between Dubler's insistence that certain kinds of tests should not be offered or given (for example, tests for genetic markers for personality dispositions, as opposed to tests for markers for severe medical or mental disabilities), as against Asch's contention that all tests that are possible should be made available.

Read the complete posting here.

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