An agreement between the US National Institutes of Health (NIH) and the family of Henrietta Lacks, a US woman whose cervical cancer cells taken without consent in 1951 led to numerous medical breakthroughs, will give the family some say in how genetic data from the cell line is used.
The cells were obtained from a tumour biopsy taken from Lacks when she was a cancer patient before US regulations requiring consent were introduced. Known as the HeLa cell line, the cells were the first to be replicated indefinitely in the laboratory and continue to be widely used in biomedical research in the development of vaccines, notably for polio, and the treatment of fertility and cancer. However, the family, who had only learned about the existence of the cell line decades after Lacks died, expressed concern about not having been consulted by researchers using the cell line.
In March, a German research group sequenced and publicly released the genome of the cell line. The Lacks family objected to the publication, however, saying they had not been informed and that the information could be used to expose private medical information about Lacks' descendants. The information was removed pending further consideration, prompting the NIH to begin discussions on a solution to the problem as Nature was preparing to publish another study detailing the HeLa genome.
'I think it's private information', Henrietta's granddaughter Jeri Lacks-Whye told Nature. 'I look at it as though these are my grandmother's medical records that are just out there for the world to see'.
Part of the family's concern was due to the potential for the genetic information to be used to make predictions about Lacks' relations, such as disease risk. Although the cell line may have altered over six decades of use, there was concern the sequence could reveal heritable aspects of Lacks' germline DNA, explained Francis Collins, Director of the NIH, in a comment in Nature.
David Lacks Junior, grandson of Henrietta Lacks, explained: 'The main issue was the privacy concern and what information in the future might be revealed'.
Under the agreement, two representatives of the Lacks family will sit on a newly formed six-person NIH-led working group that will consider proposals for access to the full HeLa genome sequences. NIH-funded researchers will also be required to submit their data to a single database. Also part of the agreement with the family is that they and Henrietta are acknowledged in research papers, but they will not be paid any money. Speaking on the research that has already been done Lacks-Whye said that her father 'feels compensated by knowing what his mother has been doing for the world'.
'We are excited to be part of the important HeLa science to come', she told the Associated Press news agency.
There are several examples of material currently in use in scientific research projects that have originated from non-consenting donors. Speaking on how other relatives should be treated, Collins said: 'Going forward, I'm very much of the mind that the most appropriate way to show respect for persons is to ask... if they say no, no means no'.