By Julie Burger

For years, scientists have raced to unlock the mysteries hidden in the human genome. Relatively recent research methodologies, used in genome wide association studies (GWAS), are allowing scientists to much more rapidly uncover genes that may be linked to diseases. In GWAS, genetic and health information from thousands of people is compared to locate mutations or gene variants for diseases like breast cancer, diabetes and heart disease.  (For a scientific viewpoint as to why this research theory might not be successful, click here.)  Because this type of research calls for genetic and other information from thousands, or even tens of thousands of people, researchers are increasingly trying to tap into existing bodily tissue samples and private medical data from blood or biopsy samples taken at a physician’s office or hospital.  Researchers are also asking to share information from other researchers’ studies.  What many people don’t realize is that information about them and their genes could be taken and shared among researchers or even posted on the internet.

Researchers’ quest to correlate genes with disease has encouraged government agencies to implement policies to increase the sharing of genetic samples and genetic and health information even where the individual has not explicitly consented to the secondary use. The National Institutes of Health (NIH) has implemented a plan to increase access to genetic and associated health information. Starting in January 2008, researchers who received government funding for GWAS were required at the end of the study to submit the genetic profile and associated information about the health of the people whose tissue was used. The health information might be blood pressure or weight, or it might be information about drug use, mental health, and it could include information about family relationships.

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