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Moral presentation of genetics-based narratives for public understanding of genetic science and its implications

Schulich School of Medicine, University of Western Ontario, London, Canada, jeff.nisker{at}lhsc.on.ca

Abdallah S. Daar

Program in Applied Ethics and Biotechnology, University of Toronto Joint Centre for Bioethics, Ethics and Policy of the McLaughlin Centre for Molecular Medicine, University of Toronto, Canada

The increasing number of sequenced genes that can be used to develop tests for inherited conditions has stimulated an increasing number of genetics-based narratives by journalists, novelists, playwrights, filmmakers, and health-care educators. Genetics-based narratives are to be welcomed if the public is to understand genetic science and its implications on persons, families, and communities. However, a number of important ethical issues insist caution in their research and presentation. Just as the requirements for informed consent to undergo genetic testing exceed the requirements for informed consent to undergo other types of medical testing because of the inherent complex relationships (such as between parent and child, gene carrier and other family members, gene carrier and ethnic community) and because of concerns regarding privacy and insurance discrimination, the requirements for informed consent to present a genetics-based narrative must exceed the requirements for informed consent to present other medical narratives. We recommend that a transmedia, multidisciplinary, international conference should be convened to develop guidelines for the moral presentation of genetics-based narratives, whose deliberations should be informed by the protections provided for narrative research participants, the requirements of consent for genetic testing (which include a counseling process involving all appropriate family members), and a professional obligation to do no harm to the persons and families whose genetics-based stories we present.

Public Understanding of Science, Vol. 15, No. 1, 113-123 (2006)
DOI: 10.1177/0963662506053738


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