I am a regular blood donor, registered in the bone marrow bank, and an organ donor. I would be thrilled to save another’s life.

Imagine one day as administer the routine CURE for cancer, you notice the active ingredient is derived from your own cells! You are so proud and honored to have played a vital role in curing millions, but suddenly realize the drug company has gotten incredibly rich from marketing your cells as you struggle to work to pay the bills. You did not know and were never compensated.

Sounds far fetched, but The Immortal Life of Henrietta Lacks by Rebecca Skloot recounts the 1951 events in which physicians removed cervical cells without first notifying Ms. Lacks or obtaining her informed consent. The cells were labeled with the first two letters of her first and last name, “HELA.” Since HELA cells never die, they launched a medical revolution. Her family never knew for more than 20 years later when they found out by chance. Finding out their mother’s cells were still living forever changed their lives.

As I read, I thought “This could never happen today with HIPAA and informed consent. (In Katie’s Corner, our pharmacist explores the history of informed consent).

Yet, it was perfectly legal for the physicians to do this then and it still is today. Storing blood and tissue for research does not require consent. Ms. Skloot reports most Americans have their tissue on file somewhere. If you have had a mole removed, tonsillectomy, or appendectomy your tissue may be stored in military facilities, the FBI, or National Institute of Health.

There are many guidelines but few guidelines governing this. Courts have failed to hold up the popular notion of “My body, my choice”, once the tissue is no longer attached to your body. The Federal Policy for the Protection of Human Subjects (The Common Rule) does require informed consent for all human subject research. Tissue research is not covered because it is not federally funded and the researcher does not know the identity of the donor. Gathering tissue strictly for research would require informed consent but storing tissue from diagnostic procedures does not. Consent forms typically have a line that tissue may be used for education or research or stored for future research.

John Moore was diagnosed with hairy cell leukemia in 1976. He later found out his physician patented John’s cancer cells to make valuable proteins, valued at 3 billion dollars. Moore was unable to sell his own cells, because his physician held the patent. In a subsequent lawsuit, the court ultimately ruled against John, stating when tissues leave your body, they are no longer yours.

Most people want to know if and how their tissue is being used. Some may want to opt out of research on issues they find morally reprehensible such as nuclear weapons, abortion, racial differences, and intelligence.

Initials are no longer used to identify tissue, but the technology to sequence genes makes it virtually impossible to make specimens anonymous.

Tissue from a victim of the 1918 pandemic has led to advances. These advances could not have even been imagined in 1918 making informed consent unrealistic for the donor. Others see tissue research as a duty, a moral obligation to benefit society.

This issue will not go away as we make technological advances. We will need to set clear guidelines and nurses must be involved. In Katie’s Corner, Nurses4Nurses gives some practical ways for nurses to engage any such issues. What do you think? What is our obligation as health care providers? What are our rights as health care consumers?