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

Mary M Jenkins; Sonja A Rasmussen; Cynthia A Moore; Margaret A Honein; National Birth Defects Prevention Study

doi:10.1002/ajmg.c.30157

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Journal article

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

Mary M Jenkins, Sonja A Rasmussen, Cynthia A Moore, Margaret A Honein and National Birth Defects Prevention Study

American journal of medical genetics. Part C, Seminars in medical genetics, Vol.148C(1), pp.40-46

02/15/2008

DOI: 10.1002/ajmg.c.30157

PMID: 18189287

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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.

United States

Case-Control Studies

Child

Child, Preschool

Confidentiality

Congenital Abnormalities - epidemiology

Congenital Abnormalities - genetics

Congenital Abnormalities - prevention & control

Disclosure

Ethics, Research

Genetic Research - ethics

Human Genome Project

Humans

Infant

Informed Consent

Multicenter Studies as Topic

Public Health - ethics

Public Health - legislation & jurisprudence

Risk Factors

Details

Title: Subtitle: Ethical issues raised by incorporation of genetics into the National Birth Defects Prevention Study
Creators: Mary M Jenkins - 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
Sonja A Rasmussen
Cynthia A Moore
Margaret A Honein
National Birth Defects Prevention Study
Contributors: Paul A Romitti (Contributor) - University of Iowa, Epidemiology
Resource Type: Journal article
Publication Details: American journal of medical genetics. Part C, Seminars in medical genetics, Vol.148C(1), pp.40-46
DOI: 10.1002/ajmg.c.30157
PMID: 18189287
ISSN: 1552-4868
eISSN: 1552-4876
Language: English
Date published: 02/15/2008
Academic Unit: Epidemiology; Biostatistics
Record Identifier: 9984214671802771

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