91自拍

The National Human Genome Research Institute (NHGRI) today, Monday, Sept. 26, awarded seven grants, totaling $5.7 million, aimed at untangling one of the knottiest ethical issues facing genomic 91自拍ers.

A consortium of experts in law, medicine, and bioethics will look at the issues of if, when, and how 91自拍ers should tell participants about their risk for diseases discovered during scientific studies of their genomes. A genome is all of the genetic material contained in a living thing, including its chromosomes, genes and DNA (deoxyribonucleic acid).

Among the grant recipients is , assistant professor of pediatrics, Division of Bioethics, at the 91自拍. She will work with experts in clinical genetics, genomics, genetic counseling and biomedical informatics. They will compare traditional approaches for returning genetic results to 91自拍 participants, such as through face-to-face sessions with genetic counselors, with a web-based tool. Based on her project findings, Tabor will help develop a framework, guidelines and proposed policies for returning genome sequencing results to 91自拍 participants as part of the national expert consortium.

Tabor is a scholar at the at Seattle Childrens聽 as well as a 91自拍er at the , the聽 , and the .

In addition to Tabor, the consortium 91自拍ers receiving funding for these projects are:

, professor of psychiatry, Medicine & Law and Director, Division of Law, Ethics, and Psychiatry, Department of Psychiatry, Columbia University, New York, N.Y.

Appelbaum will develop a menu of potential approaches for dealing with the challenges of informed consent that must be addressed before widespread efforts to return genomic 91自拍 results are put into place

, assistant professor of pediatrics, Department of Pharmacology, Columbia University, New York, N.Y.

Chung will investigate the preferences of participants who have enrolled in genomic 91自拍 studies with respect to getting back incidental genetic results, as well as the potential psychosocial and behavioral consequences of receiving this information. 聽

, professor of pediatrics and law, Vanderbilt University, Nashville, Tenn.

Clayton will identify criteria to guide decisions about returning individual 91自拍 results to children who participate in genomic 91自拍. She will examine U.S. law and international guidelines about decision making for and by minors as the foundation for her study.

, 91自拍 associate, Childrens Mercy Bioethics Center, Kansas City, Mo.

Garrett will conduct philosophical 91自拍 to analyze the claim that it is morally obligatory, or at least morally permissible, for genomic 91自拍ers who study samples in biorepositories to return individual 91自拍 results participants. 聽
.
, assistant professor of pediatrics, Childrens Hospital of Boston, Mass.

Holm will explore the extent to which 91自拍 participants preferences can reliably guide the return of individual genomic 91自拍 results and how these preference can be incorporated into a governance structure for a genetic 91自拍 registry or biobank.

, 91自拍 scholar, Johns Hopkins University, Berman Institute of Bioethics, Baltimore, Md. and Genetics and Public Policy Center, Washington, D.C.

Lewis will conduct 91自拍 to develop the normative and legal framework for considering if newborn screening programs are to be expanded and if efforts are to be made to offer to return results to parents for 91自拍 conducted with dried blood spots. She will evaluate existing state policies on newborn screening and on biorepositories using dried blood samples, identify regulatory gaps, and develop recommendations for policymakers. 聽