Washington – President Obama discussed over a White House forum on the Precision Medicine Initiative (PMI) the ownership of the data that volunteers offer to the program. Mr. Obama stated as an example of the discussed subject that if someone would test on him or on his genes that should be his.
“I would like to think that if somebody does a test on me or my genes, that that’s mine, but that’s not always how we define these issues,” said the president.
The Precision Medicine Initiative is a major biomedical research plan which aims to create a diverse database of health and genetic from 1 million Americans to gather data about numerous diseases and genes so researchers can study further and patients can get a more personalized diagnostic.
A large discussion from its announcement has been the ownership of the given samples. President Obama has shared that, first of all, is required to understand who owns the data before go further.
Many researchers, universities and medical centers that back them regard genetic material and the results of the test they conduct on it as their intellectual property are reluctant to share it, as reported by The New York Times.
On the other hand, consumers groups and some health advocacy organization believe that individual is the rightful owners of the data and the discoveries that emanate from them.
The National Institutes of Health, a major participant in the PMI, claims researchers and volunteers who will give their genetic information to the large data base will be partners in the project.
This partnership means that the Administration will consider and develop an approach to PMI, that includes appropriate regulatory frameworks which ensure consumers access to their own health data and the applications and services that can safely and accurately analyze it.
“Not heard before”
The individual point of view from Mr. Obama have generated many reactions in the field. Sharon F. Terry, the chief executive of the Genetic Alliance who was present in the event where Obama Spoke, said she have never heard this before from the president or anyone from the White House.
“I had chills and a few tears” said Ms. Terry when she described the moment. The PMI has been trying to shift the conversation toward the idea that participants should be partners, but this is a complicated issue, added Ms. Terry.
Dr. Francis S. Collins, the director of the National Institutes of Health, also agreed that participants should be treated as partners and not subjects in the program. He said that the initiative’s principles include finding innovative, responsible and consumer-friendly ways of sharing research data with participants.
The Department of Health and Human services issued new guidance to clarify that patients contributing to the program should have access to their medical records, including genomic testing results.
Source: The New York Times