The headline: “Research Partnership Will Seek Human Subjects for Cancer Work.” (Hartocollis, Anemone, The New York Times, Friday, April 3, 2015, p A16-17.)
The happy content: The basic researcher at Cold Spring Harbor Laboratory (CSHL) on Long Island are collaborating with North Shore-L.I.J. to access human subjects. What’s not to like?
It is hard to say why this is a news article, as there are already many medical centers that combine basic and clinical research, including Memorial Sloan Kettering in Manhattan. As the article points out, this is exciting especially for the CSHL scientists who are excited to be involved in work that is closer to achieving an actual cure in patients, and to be dealing with patients who are not necessarily white and affluent.
But perhaps it is that the patients are not affluent (translation- may not have health insurance) that this supposedly exciting news is disturbing. And the following sentence from the article says it all:
“Although the researchers will not know the identities of the patients who have given tissue samples, if a breakthrough discovery were made, it would be possible to retrace the identity of the donor and perhaps apply the new knowledge to that person’s treatment.”
This is not good enough. “Perhaps” is not good enough.
People donate their time and their health for the idea of cures, and generally will not receive any personal return. Altruism and wanting to make a difference are wonderful traits, and don’t need a reward. But this is happening in a system in which industries and personal fortunes and jobs are build on the basis of clinical trials, and in which many people do not have good health care. Really, do we want to make the most vulnerable- those sick and without the funds to explore experimental treatments- the only folks in the system who will see no benefit for their sacrifice?
Having a universal health care system where all folks receive health care is the start to ensuring all people will see the benefits of research. Patient information, which is now bought and sold and protected and hoarded as its analysis can potentially yield more insights than experimental manipulation, might also be more readily contributed if everyone had access to emergent treatments.