Informed Consent

May 17, 2011 by Rebecca Choi

Rebecca Skloot’s The Immortal Life of Henrietta Lacks centers on the concept of informed consent. In the book, George Gey, a doctor from Johns Hopkins, took Henrietta Lacks’ cells without her knowledge and scientists used the so-called HeLa cells – the first immortal human cells grown in culture – in laboratories around the world to conduct important research. The Lacks story brings up a controversial question: Who should have rights to a patient’s cells? In The Immortal Life of Henrietta Lacks, there is a chapter entitled “Who Told You You Could Sell My Spleen?” which provides stories of John Moore and Ted Slavin, two individuals with exceptional cells. In the case of Slavin, the doctor informed him of his hepatitis B antibodies and Slavin used this information to turn his body into a business. In the case of Moore, the doctor took his patient’s cells and patented/commercialized them without his consent. Moore sued his doctor but the Supreme Court of California ruled “when tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes” (205). The court ruled against Moore because it feared that giving patients property rights over their tissues might “hinder research by restricting access to necessary raw materials” (205). This is a genuine concern; many patients would likely pursue profits if told that their tissues have commercial potential.

So, should those with scientific/medical expertise be obligated to tell patients about the value of their tissue samples? Today, the decision is left up to health care professionals and many choose not to tell patients. It should be pointed out, however, that tissue donors are not the only ones withholding access for money; the Moore decision gave the commercial value of tissues to researchers. Pharmaceutical companies, scientists, and universities interfered with scientific progress themselves through the practice of gene patenting (324). I believe patients should be given financial compensation (if their tissues yield benefits) but I also realize that this is problematic and unrealistic for a number of reasons.