NDLI: Ethical issues raised by incorporation of genetics into the National Birth Defects Prevention Study.

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Ethical issues raised by incorporation of genetics into the National Birth Defects Prevention Study.

Content Provider	World Health Organization (WHO)-Global Index Medicus
Author	Jenkins, Mary M. Rasmussen, Sonja A. Moore, Cynthia A. Honein, Margaret A.
Spatial Coverage	United States
Description	Country affiliation: United States Author Affiliation: Jenkins MM ( Birth Defects Surveillance andEpidemiology Branch, National Center on Birth Defects and Developmental Disabilities,Centers for Disease Control and Prevention, Atlanta, GA, USA. mmjenkins@cdc.gov)
Abstract	Investigators involved in public health research must conduct high-quality studies that advance scientific knowledge for the collective benefit of the public's health, while at the same time ensuring that the individual rights of human subjects are protected. Successful completion of the Human Genome Project provides greater opportunity to incorporate the study of genetic factors into public health research. Integration of DNA specimen collection into epidemiological studies of complex disorders, such as birth defects, is necessary to identify genetic risk factors that affect susceptibility to potentially modifiable environmental risk factors, but collection of DNA samples often heightens concerns about ethical issues. Some of these issues include ensuring informed consent in an ongoing study as new genetic risk factors and novel genetic technologies for study continue to be identified, achieving a balance between improving participation using incentives and avoiding coercion, ensuring confidentiality of individual genetic data, and considering when and how to report research results to study participants. We present a discussion of ethical issues addressed by investigators of the National Birth Defects Prevention Study, a multisite, population-based, case-control study of risk factors for birth defects, which has incorporated the study of genetic risk factors. Study participants include infants and young children whose parents consent on their behalf, increasing the complexity of the ethical issues. Discussion of these issues and the methods employed to ensure protection of human subjects might be helpful to other investigators working to integrate genetics into large epidemiological studies.
File Format	HTM / HTML
ISSN	15524868
Issue Number	1
Volume Number	148C
e-ISSN	15524876
Journal	American Journal of Medical Genetics Part C: Seminars in Medical Genetics
Language	English
Publisher	Wiley
Publisher Date	2008-02-15
Publisher Place	United States
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Discipline Genetics Discipline Medical Congenital Abnormalities Genetics Prevention & Control Ethics, Research Genetic Research Ethics Public Health Case-control Studies Child Child, Preschool Confidentiality Epidemiology Disclosure Human Genome Project Humans Infant Informed Consent Multicenter Studies As Topic Legislation & Jurisprudence Risk Factors United States Journal Article
Content Type	Text
Resource Type	Article
Subject	Genetics Genetics (clinical)

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1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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