"The genome reveals a lot of information, but we don't know what information is out there," said David Lacks Jr. "It would be a free-for-all."
He compared the potential future of the genome to the advancement of the cellphone, pointing out how clunky and basic they were in the 1987 movie "Wall Street" compared to today's sleek models that are minicomputers.
NIH officials met with Lacks family members, Skloot and those in academia at Hopkins over the past four months to address family concerns. They laid out three options: free access to the data, no access or restricted access.
The family members agreed to restricted access because they support science. As part of the agreement, they ask researchers to acknowledge the family and the contributions of Henrietta Lacks in any research papers.
The Lacks case has stirred debate about consent in medical research. Cell samples may be used in gene sequencing without permission of the person as long as they cannot be identified. But as technology advances, it is unclear whether somebody's identity could be traced unintentionally. For instance, a scientist could run the genome of an anonymous subject through a database where it could link to another database where the person is identified.
"There are lots of topics that are being very actively discussed right now about how to deal with the ethics of what we can do with a biological sample from a human being going forward," said Alexander Caprone, the Scott H. Bice Chair in Healthcare Law, Policy and Ethics at the University of Southern California's Gould School of Law. "We haven't figured that out."
Collins of the NIH said he has used HeLa cells in his lab and that more needs to be done to protect the privacy of those who donate genetic material.
"Frankly, the science has moved faster than the consent process, and maybe it is time to catch up," he said.
NIH officials said they do not expect the partnership with the Lacks family to set precedent because it is a unique case. The Lacks case occurred when there were no consent laws. Because the case, and as an extension the family, has become widely known, it has created more potential for privacy issues.
One bioethicist says the decision by NIH will have broader implications beyond influencing NIH-funded researchers.
"Anything that NIH does has a profound effect on the rest of the scientific community," said Ruth Faden, director of the Johns Hopkins Berman Institute of Bioethics, who will serve on the new working group and was part of the discussions with the Lacks family. "For NIH to take a step like this is huge, and it needs to be underscored that it will have implications not just on NIH grant-funded scientists but beyond as well."