Cell robbers?

A co-worker lent me the book "The Immortal Life of Henrietta Lacks" by Rebecca Skloot. I read it last week, hence the intermittent posting, and I thought I would comment on the content of this work of non-fiction.

Skloot's book tells the story of a woman named Henrietta Lacks, who died of cervical cancer. Cells from her biopsies, which were taken during her treatments at John's Hopkins, lead to a biomedical research boom. Around the world in the biomedical research community, Lacks' cells became known as the HeLa (pronounced He-lah) cell line. HeLa cells grow robustly in the laboratory because they harbor the human papillomavirus HPV-18 type, the cause of Henrietta Lacks' cervical cancer. These cells are still used every day around the world in numerous laboratories to conduct experiments.

Overall, this book gave an interesting clinical history of Henrietta Lacks' treatments. It captured some of the socio-economic issues of her day, some of which are still seen when the book discusses Lacks' family in the present day. As a scientist, the descriptions of the science were accurate and well explained in layman's terminology.

Personally, the most interesting and alarming part of the book was the portion that discussed the ethical concerns surrounding the acquisition of patient cells without their consent. In some cases, these cells or other biological material is exploited by scientists through patents and profit from discoveries made with these patient specimens.

Because I work within the biomedical research community, I'm keenly aware of how these human samples are necessary for scientific discovery. However, even I found myself shocked and horrified to think that my own cells, or even the foreskin of a future son, could be donated to biomedical research without my consent or knowledge as a result of me consenting to treatment or common procedures. I find the whole thing quite deceitful and I felt like this was a huge invasion of privacy.

These ethical concerns have led to new requirements mandating patient approval for some scenarios, but these improvements are insufficient. It is true that human specimens can no longer be named in laboratories in a manner such that identifying personal information could expose the true identify of the patient from which the material originated. Despite these small changes, it is my belief that for most procedures patients are not asked for permission regarding the subsequent use of their "body" parts that are taken during treatment.

Skloot mentions how in some cases biological material acquired from patients can be quite lucrative, yet patients have no legal rights to any of the proceeds made from patents on or sales of their own material. Skloot cites the legal justification made in one court case that stated patients have no claim to these materials because they were deemed to have "abandoned" the material. Other patent law arguments were made to uphold this ruling by stating that man's ingenuity modified these materials such that it was no longer as it was found in nature. Another argument was that patients would hold up scientific progress because of their greed and desire for a cut of the profit from the use of their own biological material.

Regardless of the philosophical argument, it is my opinion that patients should be asked before each biopsy or diagnostic test whether they consent to donate their material to research. Just like people have to choose to donate their organs upon death, we should be asked and have our wishes legally respected regarding what is done with our biological material. Anything else is akin to doctors stealing bodies, like they did back in the 1800's and early 1900's in order to have fresh cadavers to practice on in medical school. Body-snatching is not allowed anymore, and yet doctors have ample access to cadavers. So, I don't quite buy the argument that asking for patient consent would hinder science, just like it didn't cut down on blood, sperm, bone marrow or organ donation.

Next time you have a biopsy done, ask your doctor what will happen to your material. And if you are uneasy about this exploitation of patients, then please share this article and contact your local congressman or senator!