The link below is to a very good summary of the HeLa story, from a 2010 article in the Johns Hopkins Magazine. Some quotes from it seem relevant to our discussion, so I include them below.
As for the HeLa cells themselves:
"They now live by the uncountable trillions in laboratories and the inventories of biologics companies throughout the world, still robust after 60 years and perfect for all sorts of research. The HeLa cell line has been the foundation of a remarkable number of medical advances, including the polio vaccine, the cancer drug Tamoxifen, chemotherapy, gene mapping, in vitro fertilization, and treatments for influenza, leukemia, and Parkinson’s disease."
From the article:
"Present-day researchers at Hopkins acknowledge that in the 1950s, the very concept of informed consent as it’s now known was not on researchers’ minds. Daniel Ford, vice dean for clinical investigation at the School of Medicine, observes, “In that era, researchers got a little carried away with science and sometimes forgot the patient, and physicians treated patients the same way clinically—it wasn’t shared decision making.” David Nichols, vice dean for education at the school, adds, “It was a relationship that was utterly imbalanced with respect to power and privilege. There’s a lingering sense, even today, of this imbalance, which has deep historical roots.”
"Before a procedure at Hopkins, patients now sign a consent form that includes this clause: “Johns Hopkins may dispose of any tissues or parts that are removed during the procedure. Johns Hopkins may retain, preserve, or use these tissues or parts for internal teaching or other educational purposes without my permission, even if these tissues or parts identify me. However, Johns Hopkins may only use or disclose tissues or parts that identify me for research with my permission or with approval of a review board governed by federal laws protecting these activities. If the tissues or parts do not identify me, Johns Hopkins may use them for scientific (research) purposes without my permission or action by a review board.”
"Finally, current consent regulations cover only studies done by researchers who have firsthand contact with tissue donors. If you are a scientist working with anonymized tissue samples taken from a repository, that is not considered research on a human subject and no informed consent is required."
"Ruth Faden, director of the Berman Institute, raises one more ethical issue: when to ask for informed consent. Is it proper, when patients are about
to undergo surgery and have to deal with consent for the operations, to present them with another set of decisions regarding what might be done with their tissues? Faden recently had surgery to repair her shoulder’s rotator cuff; she notes that like anyone, she has a finite amount of emotional energy, and in this case wanted to apply it to thinking clearly about
her impending procedure, not what might be done with some of “the gunk,” as she puts it, that was cleaned out of her shoulder. Says Scott, “How much are people going to be paying attention? They’re under stress from their condition, then you’ve got this other thing that you shove underneath their noses.”
archive.magazine.jhu.edu/2010/06/immortal-cells-enduring-issues/