Wednesday, 5 June 2013, 18:00, Small Operon

Genome sequencing and the future of confidentiality in the 21 century:
the HeLa case

Lars Steinmetz will introduce and lead the discussion

In 2008, we invited Rebecca Skloot, an American free-lance writer, to come and give a Science and Society seminar at EMBL under the title "The Immortal Life of Henriette Lacks: the history and ethics of research on human biological material". Later, when her book bearing the same title came out it it was widely acclaimed and became a international best-seller. Rebecca's seminar here at EMBL back in 2008 was one of our best-attended Science and Society events, and gave rise to animated discussions that continued long after the seminar ended. The HeLa cell line had acquired a human face!

To quote the abstract for Rebecca Skloot's 2008 seminar:

"Henrietta's cells did wonders for science, but also had dramatic and troubling consequences for her children and husband – an impoverished tobacco farmer with a third grade education who struggled to afford housing and healthcare, and didn't learn about the cells until 25 years after Henrietta's death.

Rebecca Skloot will trace the history of cell culture and the ethical debate surrounding research on human biological materials through the story of the HeLa cell line – the incredible science they inspired, the researchers who made it possible, and the collision between science and Henrietta's family. It's a story that raises important and complex issues about informed consent and commodification of human biological materials in an age when access to those materials is essential for medical advancement."

Nearly five years later, in March this year, Lars Steinmetz and his team published a paper in an online journal (3Gs) announcing their accomplishment of having produced the first high-resolution sequence of HeLa cell lines (EMBL Press Release, 13 March 2013).

Assuming that they were following a normal, if not laudable, scientific practice, they proceeded to place their sequence data in a public, open database. Less than two weeks later, an article by Rebecca Skloot appeared in the New York Times where she decried on behalf of Henrietta Lacks' descendants the fact that they had neither been informed, nor had their consent been requested (see also the article in Nature). The NYT piece was instantly taken up and elaborated on in a multitude media, both scientific and public, and various opinions of what had happened came to light.

At this EMBL Science and Society Discussion meeting, Lars Steinmetz will relate his experience of this episode and offer his interpretation of its implications. Lars will talk for the first 15-20 minutes, and then we will reserve the remainder of the hour for an open discussion.