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The new agreement will restrict access to the genome data from both studies. Researchers who want to use that data will have to ask permission from the six-member committee.
Applicants will have to agree to restrictions such as not sharing the DNA information with others, reporting back on their results, and acknowledging the Lacks family in their publications.
The deal also covers any future HeLa genomes produced with NIH funding.
"They’ve basically put (the family) at the table where the decisions are going to be made. That’s really a common-sense thing to have done," said Dr. Robert Cook-Deegan of Duke University’s Institute for Genome Sciences & Policy.
The family has a legitimate right to say, "We want this to be a partnership, not an exploitation," Cook-Deegan said.
He and Clayton said the Lacks saga was so unusual that they don’t expect the agreement to be repeated for other cases. But they said the deal highlights the ethical issues surrounding the handling of DNA and other biological samples from patients in research.
Clayton said she thinks it will promote the idea of controlling access to genome information, or at least obtaining explicit and informed consent from donors before putting such information in publicly accessible databases.
Cook-Deegan said the agreement promotes the idea that donors or their family should have some kind of say over how their DNA or tissue is used for research.
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