May 2 marks the final event in the Exploring Ethics Forum: The Henrietta Lacks Series, a nine-month-long series run by the San Diego’s Center for Ethics in Science and Technology as part of the citywide event, The Henrietta Lacks Project. Along with numerous other events held by academic institutes across San Diego as part of The Henrietta Lacks Project, The Henrietta Lacks Series has been exploring ethical issues through the lens of Rebecca’s Skloot’s best-selling novel “The Immortal Life of Henrietta Lacks.”
Over the past nine months, the San Diego community has considered a wide array of controversial ethical questions examined in Skloot’s book from donor informed consent and protection of vulnerable populations in scientific research to the commercialization and the religious implications of “immortal” cell lines.
Central to all of these issues is the basic question: “Do we own our bodily tissues?” If our tissues are our property in the same way as our cars and houses then it seems clear that our tissues should not be taken from us without our consent or used in any way that we have not agreed to and that we should get a share or at least some form of compensation when profits are made from the use of our tissues. If someone takes our material possessions, it is considered theft or grounds for a civil action for conversion. However, when it comes to our tissues, our rights are less clear.
In the U.S., we have a fundamental right to privacy that protects our right to control our bodies. This is a broad right that includes the right to refuse medical care and the right to procreate. However, while our society holds sacred an individual’s right in his/her body, the same rights are not recognized for an individual’s tissues. Once tissues or cells are removed from our bodies, they are no longer afforded the same protection.
What is the reason for this distinction? Is it the mere fact that tissue samples are separated and thus technically no longer part of our bodies? Or is that these samples provide endless potential value to scientific and medical breakthroughs and that extending the right to privacy to these samples would seriously stifle such progress? Without access to HeLa cells (the immortal cell line created from Henrietta Lack’s tissues) innumerable crucial scientific discoveries, such as the number of human chromosomes, and essential medical treatments, such as the polio vaccine, would have been substantially delayed or in some cases would never have been possible.
An interesting examination of the question of tissue donor rights is provided in the 2006 case of Washington University v. Catalona (437 F. Supp. 2d 985 (E.D. Mo. 2006), aff’d, 490 F.3d 667 (8th Cir 2007), cert. denied, 128 S. Ct. 1122 (2008)). This case is particularly interesting as the court considers the issue of tissue donors’ ownership rights apart from the complicating factors of deception or commercial gain that often color the facts in other cases involving donor rights.