Thursday, May 18, 2017

What do We Deserve?

When the Affordable Care Act was passed in 2010, it was met with two completely different reactions.  Some viewed it as a mandate, while others viewed it as a right.  In a sense, the law mandated that all United States citizens carry health insurance while also propagating that all United States citizens have a right to affordable access to health care.  Not everyone agrees with either of these proponents, which has made for interesting conversations over the past year.  One of those conversations focuses on patient rights – specifically how much we deserve.

If you have not read the Immortal Life of Henrietta Lacks, I highly suggest that you do so.  Or, if you prefer to watch TV, you can watch the TV version that was just released.  Either way, it is a very interesting story.  Henrietta passed away from cancer, but before she died, a sample of her cancer cells were used to create the HeLa chain – a chain of cells that proved to be very helpful to scientists.  These scientists eventually benefitted financially from their research (involving Henrietta’s cells), but neither Henrietta nor her living relatives received any compensation for the cells or research finds.

Is this unusual?  Not really.  Henrietta’s cells were unusual, yes, and very helpful to scientists, but we do not usually benefit from body parts that are donated in our country.  The law states that once a blood or tissue sample taken from a patient leaves the room that the patient occupies, it becomes property of the healthcare facility.  The healthcare facility is then free to use it for purposes beyond the tests that have been ordered.  In Henrietta’s case, the cells were found to be very helpful to scientists.  But, without the scientist’s expertise, the cells would have simply sat in a petri dish or been discarded.

Some may argue that Henrietta did not consent for her cells to be used for research.  The law is also clear on that issue – patients have the right to consent to or refuse research.  However, the research was conducted after Henrietta’s cells were removed from her presence.  It’s actually quite remarkable that her family members learned about the research – most of us never know what happens to that blood or tissue sample after we rececive our test results.

It really boils down to “what do we deserve”?  Should Henrietta’s family be compensated for the use of her cells?  Or should the compensation stay with the scientists who used their knowledge to further research surrounding cancer and cancer treatments?  A lawsuit will be looking at that issue later this year.  If the courts rule in favor of Henrietta’s family, we might be looking at another dynamic change in our country.

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Submitted by Valerie Connor, M.A., CCC-SLP, Adjunct Faculty at Saint Joseph's College.

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