Human Genetics Resource Center: DNA and Cell Line Repository -- Relevant Federal Policies, Laws and Procedures

Relevant Federal Policies, Laws and Procedures

The Human Genetics Resource Center: DNA and Cell Line Repository
The NINDS Human Genetics Resource Center at the Coriell Institute is a growing bank for human cells, DNA samples, clinical data, and information sources to accelerate research on genetics of disorders of the nervous system. Its mission is to provide genetics support for scientists investigating pathogenesis in the central and peripheral nervous networks and information support for patients, families, and advocates concerned with the living-side of neurological disease and stroke.

Sharing Data/Resources

• National Institutes of Health Statement on Sharing Research Data
  
  
• National Institutes of Health Grants Policy Statement -- See NIH Grants Policy, Part II Subpart A, Availability of Research Results: Publications, Intellectual Property Rights, and Sharing Biomedical Research Resources for information regarding a detailed description for NIH grantees to share resources, pages 1192-121
  
  
• Public Health Service policy relating to the distribution of unique research resources produced with PHS funding, NIH Guide, Volume 25, Number 23, July 12, 1996
  
  
• Principles and guidelines for sharing biomedical research resources found in online NIH reports
  Model Organisms for Biomedical Research
  Principles and Guidelines for Recipients of NIH Research Grants and Contracts
  Sharing Biomedical Research Resources
  Report of the National Institutes of Health: Working Group on Research Tools

Requiring Human Subjects Privacy Issues in Research

• Protecting human subjects in genetics research, National Human Genome Research Institute
  
  
• Regulations and ethical guidelines, Office of Human Research, National Institutes of Health
  
  
• Policy and legislation: Privacy of genetic information
  
  

Community Consultation in Genetic Studies

• First Community Consultation on Responsible Collection for Genetic Research, National Institute of General Medical Sciences
  
  
• Genetic Counseling and Testing
  
  
• Points to Consider When Planning a Genetic Study That Involves Members of Named Populations
  
  

NIH International Genetic Studies

• International Ethical Guidelines, Codes, and Declarations