The National Institutes of Health announced a multi-million dollar initiative, backed by President George W. Bush, this month that will attempt to identify the genetic and environmental causes of common illnesses, including diabetes and hypertension, but privacy groups are concerned the database will violate privacy rights by accessing citizens’ medical records.
The project will begin this year with a study of seven common illnesses, which have yet to be determined, but researchers plan to add to this amount in upcoming years, according to the NIH release.
“Our hope is that this public and private initiative will encourage a deeper collective understanding of the genetic factors of disease for major new therapeutic advances,” Martin Mackay, a senior vice president for Pfizer, said in a statement.
Officials at the NIH noted the importance of determining the ways genes and the environment affect each other.
“Differences in our genetic makeup certainly influence our risks of developing various illnesses,” Dr. David Schwartz, co-chairman of the NIH Coordinating Committee for GEI, said in a statement. “We only have to look at family medical histories to know that is true. But whether a genetic predisposition actually makes a person sick depends on the interaction between genes and the environment.”
In a statement obtained by the Daily Free Press. Mike Leavitt, secretary of the Department of Health and Human Services, said the new initiative will draw on research from previous genetic projects to “speed up the discovery of the genetic causes of common diseases like diabetes and hypertension.”
All the results from the study will be compiled in a database that can be accessed by other researchers, according to the Feb. 8 release.
Members from some private groups said they are alarmed that database will publicly display information that could violate privacy laws regarding medical records.
“The ability to protect data is still not anywhere close to what it needs to be to stop hackers and outsiders from getting information,” said Dr. Deborah Peel, the founder and chairman of Patient Privacy Rights Foundation, a group concerned with the confidentiality of medical records.
“To protect patient privacy, NIH should not simply seize the data using their federal authority, but they should seek opt-ins, then they should clearly spell out what will be done with the data and who will have access to it,” Peel said. “There should be ironclad promises that the collection of data won’t be re-disclosed.”
Peel said she is concerned that removing details that could identify patients is not enough to protect them.
“Computer experts have shown how easy it is to re-identify purportedly de-identified data,” she said.
Funding for the project will come from a new partnership that will join biotechnology companies and the NIH, according to the release.
The Genes and Environment Initiative, spearheaded by the NIH, focuses on the analysis of genetic data from patients with specific illnesses and development of technology to monitor environmental factors that contribute to these illnesses.
Pharmaceutical company Pfizer Inc. will contribute $20 million towards management and laboratory studies for the initiatives, and President George W. Bush’s proposed budget for fiscal year 2007 also includes $68 million for the project, according to an NIH press release on Feb. 8.
The NIH declined to comment on the program.