Monday, August 12, 2013
By Yvonne Stevens
62 years after the death of Henrietta Lacks, as a result of an aggressive form of cervical cancer, her family finally reached an agreement with the National Institutes of Health with regard to future use of the contentious, lab-cultivated HeLa genome data (see also NY Times and Nature coverage). HeLa cells, derived from a tumor biopsy, are the most common and widely used cell line, the subject of thousands of academic papers and have contributed toward many medical advances over the years. Prior to the agreement with the NIH, HeLa cells were studied and publicized without the knowledge, consent and recognition of Lacks or her family, raising ethical and legal concerns.
A similar controversy, over the ownership and rights relating to genetic material, arose a few years ago between Arizona State University and the Havasupai Indian Tribe. The tribe filed a lawsuit against certain members of the university which was eventually settled in favor of the Havasupai.
We can all hope that the outdated practice of exploiting tissue samples without proper consideration of the donor’s or the descendants’ legal interests and rights has been permanently parked alongside the horse and buggy. Genetic data is critical to the advancement of future biomedical research. Making sure donors are recognized as part of the scheme is paramount.