Policy Uncertainty, Sequencing, and Cell Lines

The circumstances surrounding the creation of the HeLa cell line are now well known. The best-selling book by Rebecca Skloot, The Immortal Life of Henrietta Lacks (Skloot 2010), detailed both the creation of the cell line and the associated ethical and social controversies. The Skloot book received a great deal of praise and media attention–which often used the book to surface a range of ethical issues associated with biomedical research (Nisbet and Fahy 2013). The recent sequencing and publication of the genome of one HeLA cell line (Landry et al., 2013) has further intensified public attention on the circumstances surrounding the Lacks case and the associated ethical challenges, particularly in relation to ownership and control of samples and data (Skloot 2013). While we should not over-interpret the story of the HeLa cell line as being emblematic of how research involving human tissue is conducted, it provides an opportunity to reflect on the profound and enduring lack of clarity that surrounds many relevant legal and ethical concepts (Callaway 2013). Given the advances in sequencing technology, the growing significance and investment in biobanking, and the push for open access to the results of scientific inquiry, it is essential that current policy uncertainties be acknowledged and addressed. Otherwise, we risk creating misconceptions, undermining public trust, and unwittingly derailing advances in the field. This article seeks to highlight two important issues in need of immediate policy attention, as underscored by the public response to the HeLa story: ownership and control of biological specimens, and obligations to third party relatives in genomic research.