Trial mobile version Guidances- combined files 6_27_14 - page 6

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 NHGRI Overview of Genetic Information Nondiscrimination Act (GINA) of 2008
This website from the National Human Genome Research Institute includes a fact sheet about
GINA for researchers and health care professionals, as well as information for individuals
participating in research studies. It provides useful information about where GINA is and isn’t
applicable.
Excerpt:
 GINA: Implications for Investigators and Institutional Review Boards
 Guidance for Informed Consent of Participants in Genomics Research
 GINA HELP: Interactive Educational Resource for the Lay Person or Non-scientist
 OHRP Guidance on the Genetic Information Nondiscrimination Act: Implications for
Investigators and Institutional Review Boards
This is a guidance created by the U.S. Department of Health and Human Services Office of Human
Research Protections (OHRP). It provides background information on the Genetic Information
Nondiscrimination Act (GINA) of 2008. It discusses the implications of this act for researchers and
for Institutional Review Boards.
 The Council of the Human Genome Organisation (HUGO) Guidances:
HUGO created the following statements to address concerns about the ethical conduct, quality,
and safety of various types of human genetic research.
 Statement on Human Genomic Databases (2002)
 Statement on Gene Therapy Research (2001)
 Statement on DNA Sampling: Control and Access (1998)
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 Statement on the Principled Conduct of Genetic Research (1995)